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Old 09-18-2011, 01:36 PM   #1
CoolBreeze
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Liver Resection Surgery

Hi ladies,

I haven't posted in a while but I wanted to update you with what is going on with me, and ask if anybody else has had the same treatment I'm getting - I remember somebody here having it!

October 3rd, at UCSF, I will be having a liver resection for my mets. They are taking all of the right lobe and part of the left. This is an open surgery and they will do a sonogram on my actual liver and if they find anything unexpected, will do microwave ablation if it can't be removed - this is all happening with curative intent.

I am very lucky in that I only have mets to my liver, and only three (although bi-lobular). I've been on Navelbine, Herceptin and Zometa for about 3 months now, with mixed result. (Two shrank, one did not.) My oncologist had heard about an aggressive doctor in SF who does this kind of surgery and contacted him on my behalf. After seeing me, he agreed I was an excellent candidate.

Here is my surgeon:
http://cancer.ucsf.edu/people/nakakura_eric.php

They have been doing liver/lung resections in people with metastatic colon cancer with good results - at ASCO this year, it was presented that women with breast cancer may get the same benefit.

While I'm not the first person to get this surgery for breast cancer, I can't find a whole lot of people who have had it. I know the women here are very on top of new thought and I know somebody here who has experienced it and can tell me what to expect.

Did you have it? What did you experience? What chemo were you on afterwards?

Thanks!
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-18-2011, 03:18 PM   #2
jml
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Re: Liver Resection Surgery

Hi~
I had a R hepatectomy back in December '05.
But first, a little background - I was dx'd 5/17/2002, Stage IV L IDC w/a single met in the R lobe of my liver.
After a 43 weeks of of 3 different chemo combo's, it was ultimately the Taxol +Herceptin that got me to NED x 1 year, that was 2003.

In 2004, the single lesion popped back up and we spent ~ 1 year beating it back, with short rounds of TH. Ultimately, it began to grow faster and that's when my surg onc. said okay, it's time to go in and get it. Going into the surgery I was in really good physical condition, walking, teaching pilates, etc. as I'd never felt any symptoms of the disease, except for beein bald;(

The surgery was as you described - The first hour of the surgery is exploratory - confirming that the only disease is the stuff they already know of, but if there are additional spots, those can be RFA'd.
In my case, my L lobe was totally clean, so just the single lesion in the R lobe, but it was close to the main portal vein & they thought they might have to resect that too and do some vascular repair, but fortunately none was needed.
It was after that 1st hour my surgeon called back to my family's waiting room to tell them 'nothing new & it's a go' that I'm told my mom was finally able to exhale and cry in relief.
The whole procedure took ~5 hours. The R lobe represents 55% of the organ, but as I understand, we can survive with just 15% of our liver.
I was in the hospital for 4 days, including Christmas day, so my friends and family set up a cute little fake Christams tree in my room. I was able to go home the next day.
A couple of details about my surgery...my incision runs from ~1"below my sternum to ~1"above my belly button.
It was supposed to be a "hockey stick" incision, with an additional 2 inches of the bottom cut to an angle, like a hockey stick, but my surgeon was able to avoid that
additional incision & I'm really grateful for that. (About my incision - I asked my surgeon to draw on my belly what the incision would look like. He was a little surprised by that request, but I told him that I didn't want to wake up and see the incision for the 1st time, I wanted to be able to "see it" before the surgery so I'd know what to expect.)
I also got an epidural,which was placed in pre-op, but dc'd 24 hours after the surgery.
My surgeon wanted me up & walking asap, which was fine with the epidural, but once they took that away,it was a lot tougher, until I figured out how to manage on the oral pain meds. By day 7 post surgery I was completely off all narcotics & just taking tylenol as needed & stool softeners bc they don't want you straining at all.
I remember feeling really bloated & having a lot of trouble passing gas & I wasn't hungry at all while i was in the hospital, but managed a little bit of fruit. Ofcourse, when you're in the hospital, they're always so concerned about passing gas or having a bm. I managed to produce something the size of a grape so I could go home!
Once home, I actually found I was more comfortable sleeping on the couch because I could prop my self sideways, lying on my L side to sleep and it was easier to get to a seated position. Those 1st few days I remember it being really painful/difficult to bring myself to sit, but once I was up, I was okay.

It really does take 4 weeks to heal, which seems long. But each week, I could feel myself getting exponentially stronger and better with more & more energy. By week 4, I was driving a friend to her doctor's appointment.
I also remember always being told that the liver regenerates - 4 weeks to regenerate + 4 weeks to reintegrate with other lobe - and that's not totally accurate.
The liver can regenerate, but not necessarily back to it's original size and shape. I can see in my CT's that my R lobe is definitely not as full as it was originally. But that's not so important bc my liver function continues to be normal, so that's good. I was able to return to teaching & training Pilates ~ 5months later.
My liver had remained NED until 2009, that's 5 good years! Though we've chased my disease around supraclav nodes, retroperitoneal nodes, & other places, I'm continuing to beat this monster back, crossing fingers, toes, bone marrow and everything else that there's another drug out there that will knock be back into the arms of NED.
I hope this info as been helpful. Please don't hesitate to reach out and send me a note with a question about anything at all.

NEVER give up HOPE and always Keep the Faith!

Jessica
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Old 09-18-2011, 04:31 PM   #3
CoolBreeze
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Re: Liver Resection Surgery

Jessica, wonderful information, thank you so much! It sounds like your recovery wasn't as awful as I feared and I hope I have the same experience. I have had two surgeries so I'm familiar with post-surgical pain but this one scares me - it seems so big. I have had issues getting pain control in the past but this time I'm going to a different hospital and hopefully the nurses will be more sympathetic and willing to work.

Five years NED is wonderful and I will be very grateful if I get that! Did your surgeon ever recommend another resection? I've heard of people having them again when cancer returns.

One question - can you eat a regular diet? Did they take your gallbladder? Do you ever get to have a glass of wine, or ice cream, or high fat foods? I hear that sometimes food becomes more difficult to digest. I don't want to do without my Coffee Heath Bar Crunch! LOL.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-18-2011, 08:00 PM   #4
jml
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Re: Liver Resection Surgery

Hi CB~
Yes, I did have a cholecystectomy (gall bladder removed), but I forget sometimes. And no, I haven't had any issues with food since the hepatectomy.
I think in the initial weeks post surgery all digestion was slow and difficult, a bit more gassy, but everything resolved with time.
My surg. onc said "NO ALCOHOL for 6 mos" after the surgery. I remember once the 6mos was up I really wanted a frozen margarita, but everyone suggested that I should ease in to the cocktails, rather than starting with tequila!
You probably won't be interested in very rich foods or drink, like wine & ice cream, but soon enough you'll be able to tolerate it again. I know Ben & Jerry would hate it if you had to quit Coffee Heath Bar Crunch!

When my disease did return in my liver we didn't consider another resection because I've had other systemic involvement, so it's been chemo, chemo, chemo for me. Last June I had chemoembolization with Adriamycin to debulk the disease in my liver, and I think it's been pretty okay ever since (with the help of 6mos of TDM1, a few cycles of a PI3Kinase drug, and now Halaven).
I wish you the very best outcome from your surgery and 5x5x5x5x5.....years NED to come!

Keep the Faith~

Jml
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Old 09-18-2011, 09:50 PM   #5
chrisy
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Re: Liver Resection Surgery

Thanks, pioneers! I'm considering looking at this option myself to tackle a stubborn met and node. Keep us posted on how it goes. I am also treated up at Ucsf so will definitely check out the link
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 09-19-2011, 03:08 AM   #6
Ellie F
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Re: Liver Resection Surgery

Good luck with the surgery. I am glad you posted as i thought the other day that it was a while since we heard from you. Please let us know how it goes.
Sending good wishes across the pond.
Ellie
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Old 09-19-2011, 05:26 AM   #7
Kathy T
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Posts: 79
Re: Liver Resection Surgery

I am also facing possible liver mets --am now receiving T-DM1. Were your mets confirmed by bx.,scans or MRI? We are having a difficult time determining if we're dealing with mets or? Thanks for a very informative discussion.
Kathy T
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Old 09-19-2011, 07:38 AM   #8
michka
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Posts: 858
Re: Liver Resection Surgery

Hi CB.
My experience with liver resection is close to Jessica's except that I was operated in march this year so it is too early to say if it was a good decision or not. My last pet/scan in august did not show activity in the liver.

Almost 4,5 years after my initial dx, a liver met was detected by pet/scan confirmed by MRI and nothing else. I decided to have it taken out by coelioscopy. That was not a good idea. First because they did not get clear margins and second is that although they passed an echography machine over the liver they did not detect anything else. A month and a half later another Pet detected 2 other tumors. I had started Herceptin and Tykerb right after the coelioscopy. I then went for liver resection after considering cyberknife. I did well because the 2x1cm tumors were taken out but this time the ultrasound detected 2 other very small tumors around 3mm inside the liver that were taken out during the operation with RFA. They were not detected on the pet or the MRI I had before the operation. Ultrasound works better of course during an open operation when you pass it close to the liver than during a coelioscopy. During the operation unfortunately or fortunately they also found 2 positive nodes they took out also. They took other suspect spots and nodes out but they were negative. Without an open operation they would not have seen that. Taking the mets out will also allow you to know if their characteristics are the same as the ones of your initial tumor or if they changed.They also took out my gallbladder. I had an epidural put in before the operation I kept it 48 hours. I stayed in the hospital less than a week.
I had a lot of digestion problems and still do but a month after the operation I started Navelbine. I think the problems I still have come from the chemo. I was very tired but I put that also on the navelbine+tykerb+herceptin I now take.
As you can see I did things in a different order: first resection and then chemo. Why? Because I don't trust chemo. My initial chemos did not work well. I had them as neoadjuvant so when I had my mastectomy I could judge that. Taking out a met is not a cure but at least it is not that one that will kill you if chemo fails and it may give you time.
In june a small bone met appeared on my sternum and I had no other choice than to continue chemo anyway. (I just had the sternum met "cyberknifed") If for a long enough period I have no other met and my markers are OK I will just stay on herceptin and tykerb. But I am not there yet.
It is a difficult decision CB. It is not a standard procedure for BC (yet?) but we are a few now to have followed it. Ask all the questions you have again and again to your onc and surgeon and then decide.
I hope you understand my poor English. I send you a lot of cyber hugs.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 09-19-2011, 04:38 PM   #9
CoolBreeze
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Re: Liver Resection Surgery

Hi Kathy,

My mets were originally found on a CT scan, and then proven with biopsy.

My last herceptin as a Stage II patient was in December. I was thrilled to be done with treatment, but told my oncologist I was experiencing back pain. He did a bone scan and nothing showed up. I still had the pain so he did an abdominal CT. That was clean, including my liver. So, I just tried to ignore it.

I went on a 3 month schedule of seeing him so in April told him that my back pain continued. And, my abdomen had started bloating. Being the excellent doctor he is, he decided to rescan me with another abdominal CT. This time, we found the mets. They had grown from zero to more than 3 cm in five months.

But, the bloating nor the back pain are not explained by the liver mets - it's just one of those things. I've been scanned and Petted every which way and the only cancer is in my liver.

I went on Navelbine, Zometa and Herceptin. I was scanned again 2 months later and got mixed result. Two mets shrunk, one stayed about the same. My oncologist had heard of the doctor I linked to - that he was aggressive in trying to cure cancer patients. My onc knew I still wanted a cure and not just treatment, so he called him. The guy agreed to see me and the rest is history.

I'm very pleased to see that a few have had the surgery - some seem to do quite well. Michka, I think I remember your story - you had a rather hard time, yes?

I am a healthy eater so I don't foresee many problems there. If I never drink alcohol again I'll be fine but I sure will miss my ice cream and chocolate.

I'm looking into renting a recliner for my house when I get home, so I can sleep. I remember with past surgeries how very hard it is to get in and out of bed and I can only imagine that this one will be worse, so I should prepare.

If you all have any suggestions for post-surgery management, I'd appreciate them. I know I'll have to move a little. They have scheduled me for a 7 day hospital stay but I hope it's not that long!!!
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-19-2011, 06:21 PM   #10
jml
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Re: Liver Resection Surgery

Oh, a couple of additional thoughts & hints...
The first few days home were difficult, managing the incision, trying to move delicately. Sitting up from lying down was the most difficult/painful, so I think the idea of a recliner is a great idea.
Once I did get my appetite back, I was only able to eat very small meals at a time to avoid feeling so bloated.
One other helpful hint - My doc had me wear an abdominal binder post surgery - but I scooched it up under my breasts, around my ribs to add a little support to the incision.

Hope this is helpful...as I remember things I may post again~

Jml
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Old 09-20-2011, 04:38 PM   #11
CoolBreeze
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Posts: 562
Re: Liver Resection Surgery

Thank you again! I have no idea what an abdominal binder is, lol.

So, what about hospital clothes? I always find the stuff they give you to wear so uncomfortable. Mainly because I'm so tiny that even the small sizes hang on me. No way to close it. Should I bring something of mine and will they let me wear it, I wonder?

I've never had a long hospital stay so don't know. What about my iPad - will I be able to use it or will it feel too heavy? I don't know if I'm going to feel bad the entire time and not want to do anything, or if I'll want to read or watch shows or something.....
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-20-2011, 07:24 PM   #12
jml
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Re: Liver Resection Surgery

Hi CB~
An abdominal binder is just a big elastic with velcro that you wrap around your midsection. You can get one at a regular drug store, where all the ankle support & braces are. My doc didn't require that I use one until I was up and around and "moving too much". I argued that I really wasn't, but I was (try pulling wet towels out of the laundry with a long abdominal incision! yowze!)and as a result my incision didn't heal as nicely as it could have, so the extra support actually felt really good.

I always feel like I'm drowning in those giant hospital gowns too - maybe a roomy pj top that buttons down the front and comfy pants would work, especially when you're being examined multiple times a day and required to expose your incision.
While you're in the hospital you'll likely be really tired and sleepy most of the time. I remember I was. You're body is working so hard to heal that there really isn't much extra energy to pay attention to TV, iPad, even visitors. I would warn my visitors that I may fall asleep mid-visit - and often did. Keep visits short and sweet - remember no one is expecting you to entertain them, they just want to see you and see that you're resting and healing well. But bring the iPad anyway - I'm sure you'll be able to link up to the hospital wireless and maybe have enough energy to play Angry Birds
One of my friends brought me a big stuffed animal dog while I was in the hospital and it was nice to have something soft and cushy to hug close to my belly. Just felt comforting & safe. Your docs are going to want you to avoid straining at all costs, and it seemed a little easier to hug my big dog toy or a pillow when I had to cough, sneeze or have a bm. A favorite pillow from home might be more practical!
Even in the first days and weeks at home a walk to the mailbox, or even a shower would require a long nap afterwards. The good news is with each passing week I could feel myself get exponentially stronger and as I mentioned, by the 4th week I was back driving and running short errands.
The body is amazingly resilient and strong and I know you're going to sail through the surgery and return to strength and full health.
I hope this info is helpful...if I can think of other things I'll post again. And please don't hesitate to send me a note
if you have any thoughts or questions.

Keep the Faith!

Jml

ps-will you remind me when you're going in for the surgery. i want to be sure to send you a note with extra healing energy & love!
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Old 09-20-2011, 09:25 PM   #13
Debbie L.
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Re: Liver Resection Surgery

CB (I wish we had real names on this forum),

Regarding clothing -- It depends upon the hospital, and upon the admitting nurse
(to the post-op floor) -- as to what you can wear. Anyone with a shred of good (and kind) sense will let you wear whatever you want, while reminding you that in a crisis, that garment might be cut away to allow access. In the OR, they won't allow your own garments, because they (rightly) worship sterility and cannot be sure that things laundered outside the hospital are truly clean. But once surgery is done, it's not that big a deal to thread your garment's armhole thru the IV pump and tubing, and if you ask nicely, only a real ogre would refuse you.

It's easy to say this is a trivial point (wearing your own clothing) but I think it's bigger than it seems. Clothing, in our society, can give us comfort, and power. Or it can take that away. I hope that you'll take whatever clothing comforts and empowers you, and insist, calmly and politely, on wearing it as soon as is possible.

Lots of good thoughts and wishes,
Debbie Laxague
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Old 09-21-2011, 06:50 AM   #14
kk1
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Re: Liver Resection Surgery

Hi CB,

Having actually done 2 liver resections here is my list/comments

Hospital:
My hospital stays were between 5 to 7 days.
Be careful with the self admin with th morphine as it can make you nauseous later....that was always my biggests problem
The hospital food sucks and is not edible make sure some one brings you very very simple foods you can eat. Low sodium broth, crackers, plain instant oat meal, good bread, decaf tea ect.
Bring your own nightgown that opens in the front and a bathrobe
Slipper socks, the one that feel like a sock and have rubber lettering on the bottom to give a bit of non skid.
Have someone stay with you in the room the first 48hrs if possible....nurses busy people and you need an advocate who is watching out for you when you are not so coherent due to the anesthesia and pain mess.
Get up and walk the halls as much as possible...the more you walk the fast the recovery.

Home:

Must have a recliner
Eat small meals
Walk
Have someone staying with you the first few days t help get you things

It's a difficult operation but doable.....the first time it is scarier that it really is. The reality
Ins that surgeries are scary way easier than toxic chemotherapy, 8 weeks later in was back at work and 10 weeks later I was back snow skiing.
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU
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Old 09-21-2011, 06:54 AM   #15
kk1
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Re: Liver Resection Surgery

Sorry about all the typos the editing on the site does not work so well with my iPad
I am sitting in CTU getting my herceptin
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KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU
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Old 09-21-2011, 08:14 AM   #16
Joan M
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Re: Liver Resection Surgery

Good luck with your liver resection.

I remember your original post and replied that I had a lung wedge resection in April 2007 and then a radio frequency ablation of the lung in August 2008 for a recurrence in the same area, and was very satisfied with the results. I've been NED since October 2008 after a craniotomy for a brain met, followed by targeted radiation to the tumor bed in December 2008.

Your medical oncologist seems very progressive, as most would not even tell a patient of the option of a liver resection or an RFA.

I'm all for these options. Although I realize that metastatic breast cancer is a systemic disease and a cure will most likely come from a systemic approach, these surgical and interventional radiology procedures work well for some patients. And they seem as good as some chemo options for keeping the cancer under control, especially perhaps when combined with chemo.

Keep us posted.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 09-21-2011 at 08:17 AM..
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Old 09-22-2011, 01:49 PM   #17
Kim in CA
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Posts: 404
Re: Liver Resection Surgery

Hi CB,

Just wanted to chime in about the liver surgery. I had my left lobe removed in Nov. of 2002 at UCSF. I developed liver mets in June of 2001, and after several months of Taxotere and Herceptin, I had to stop the chemo, and just continue with Herceptin, cause my body just couldn't tolerate anymore. Pet and CT scans showed that my right lobe was now clear, but a suspicious spot was still seen on the left lobe. After lots of consideration, I decided to have the surgery, to make sure we "got it all". Turns out my entire left lobe was just a shriveled up bunch of scar tissue, with no cancer present.

I was in the hospital about a week, but the real healing didn't begin until I got home. The day they released me they took out the metal staples, and replaced them with steri-strips. I remember thinking "I hope they hold me together"!

I have a huge bucket handle shaped scar, and my tummy kind of bulges out in an odd way, but I've learned to live with it. I really didn't have that much pain when I came home. I think I stopped taking the pain pills on the second day (never liked the way they make me feel) and found that Ibuprofen worked much better.

My only advice is not to do too much too soon. I was out mucking horse paddocks in the first two weeks, and I think that's why I didn't heal as well as I could have (developed a slight hernia) it doesn't cause me any problems, but contributes to that bulging look I was talking about. No one really notices it but me, and it's not worth me going in for another surgery to repair it.

The surgery is very do-able, and you'll be in good hands at UCSF.

I'll be thinking of you and wishing you the best!

Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 09-22-2011, 02:41 PM   #18
Joan M
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Re: Liver Resection Surgery

Kim,

Thanks for this information. And glad to see that you're still doing well my friend.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 09-24-2011, 07:27 AM   #19
Lori R
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Location: Evergreen, Colorado
Posts: 454
Re: Liver Resection Surgery

Hi gang,
I am sorry that it has taken me so long to chime in. I think I was dragging my feet, as I had so hoped to post with a NED update from my recent liver resection.

But, I decided my history might be of some value. My onc tried to avoid an invasive surgery so we tried an ablation technique. I had 2 cryosurgeries followed by back up chemo. Unfortunately, the cryosurgeries did not provide a long term solution. But....the cancer hasn't spread outside of my liver for the past 4 years.

It is just soooo hard to know. Was it a good thing to have the cryosurgeries to reduce the spread??? Was it a bad thing? In retrospect my onc wondered if it created a bit of scar tissue that prevented the follow up chemos from getting to the cells.

In retrospect, I am thinking jumping straight to the resection should have been my first choice. Kudos to your Dr. for being willing to promote this procedure. There is DEFINATELY reluctance here in Denver for Stage IV cancer survivors.

The resection was emotionally a challange, as it is major surgery and is to be considered in that light. Good news!! It wasn't as bad as expected. Thanks SO MUCH to the insights and wisom of MissyW and JML I was really prepared. Surgery on Wednesday, I elected to have the epidural for pain management. Very glad I chose that option. Off the epidural by Friday, walking by Friday, out of the hospital by Sunday.

Great advice to ensure you have an advocate with you post surgery. There was a sign over my head about not taking vitals via my left arm and the nurses constantly tried to use the incorrect arm. My sister had to constantly stop them.

Now..my reluctantce piece. I am pleased that I had the surgery even though during the surgery they identified 2 infected lymph nodes that were not picked up via Pet. So I knew that negatively impacted the chance to be "cured". But...I am glad I know. Unfortunately, the cancer has spread in my liver. Hoping Herceptin + Tykerb pushes it back.

I encourage you to move forward with the surgery with confidence. Great advice above regarding how to approach the surgery. Wishing you all the best for a speedy recovery and a CURE!!!

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 09-24-2011, 08:04 AM   #20
Joan M
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Re: Liver Resection Surgery

Lori,

Thanks for your post and update. I'm sorry that the cancer has returned to your liver, and hopefully the Herceptin and Tykerb will beat it back. It's good that the cancer has stayed confined to the liver!

I've also had thoughts about chemo not being able to penetrate scar tissue, and sometimes wonder whether that was the cause of skin mets often appearing first along the scar line of a mastectomy. I too worry about my lung in this regard. That is, if the cancer were to return in the lung and I went on chemo, would all the scar tissue cause a problem. It's good to know that your onc has had similar thoughts about scar tissue.

Regarding scar tissue and lymph node involvement, I often wonder why more hasn't been done to administer chemo neoadjuvantly. I would think that it would give oncs an idea of which chemos are working and which aren't. Several trials have looked at administering Herceptin, Tykerb, and chemo neoadjuvantly (CHER-LOB and TBCRC 006 trial). They were reported on at ASCO 2011:

http://chicago2011.asco.org/ASCODail...HER2Study.aspx

The nodes involved were probably not picked up in PET because they were too small to light up. A nodule usually has to be about 1 cm.

Keep us posted, and I'm praying for NED!

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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