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Old 09-16-2012, 06:56 PM   #1
Cricket
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I just found out I have breast cancer

I just found out I have breast cancer. I am er/pr neg but HER2 pos. I had a biopsy and a breast MRI. More cancer was found in right breast and maybe in left breast. Everything I have read about HER2 sounds very so bad and it is aggressive. I want to lower the risk of cancer recurring. I am thinking that the best option would be a double mastectomy. Has having a mastectomy helped anyone else?
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Old 09-16-2012, 08:13 PM   #2
evergreen
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Re: I just found out I have breast cancer

You will be told what the research suggests is your best option. For me, with only one affected area, it was a lumpectomy and that's what I did. I did this because I tend to be an "evidence" person, not because I am vain about having breasts... I am 66, don't need them for babies, my husband didn't care, etc.
Some women in my situation would do a mastectomy, because they sleep better at night, even though the evidence suggests the chance of recurrence is the same - mastectomy, vs lumpectomy plus radiation.
If you have more than one area affected, and possibly second breast as well, they may even suggest mastectomy. Ask your surgeon to explain the research to you, and then do what makes you personally the most comfortable psychologically.
Just know that surgery either way is generally straightforward. Best of luck to you! The treatment herceptin, which you will have in either case, has, made a huge difference for women with Her2 breast cancer!
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 09-17-2012, 09:03 AM   #3
'lizbeth
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Re: I just found out I have breast cancer

I had a mastectomy on the right breast. Looking back I now wish I would have had a double mastectomy with implants for reconstruction. You can have skin sparing mastectomies and immediate reconstruction. I had a TRAM - major recovery period with complications.

I have symptoms of Pagets on the left nipple which stresses me out. My health care team is going on the theory it is something other than cancer.

I'm still dealing with reconstruction issues. If I had done the double mastectomy with the implants it would all be over and done with and I would be going on with life instead of dealing with stuff 5 years later.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-17-2012, 04:49 PM   #4
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Re: I just found out I have breast cancer

Thank you for your quick reply. I am still getting another biopsy because at my breast MRI they saw another mass in same breast. I am so scared. I sometimes feel I can't do this and other times I knew I can beat it. I am only 56 and have 2 granddaughters and I plan to see them get married. They are 2 1/2 years and 9 months old.
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Old 09-17-2012, 07:24 PM   #5
chrisy
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Re: I just found out I have breast cancer

First, you CAN do it.

Second, I agree, you will be presented with the best options based on research and your situation.

Finally, Her2+ cancer is aggressive and not to be trifled with. But with targeted therapies like herceptin and others, a her2 diagnosis is actually considered a favorable prognosis.

Take care
Chris
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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 09-17-2012, 08:34 PM   #6
'lizbeth
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Re: I just found out I have breast cancer

Cricket,

I had 3 lesions in the right breast - so a lumpectomy wasn't an option, only a mastectomy.

Breast cancer is scary stuff. But most women survive and live a long life after treatment. We are very lucky - as Chrisy mentioned with the treatment options available for the Her2 positive cancer. Reading on the internet can be alarming, as it is an aggressive cancer. However, it is a cancer that is very successfully treated in the majority of women. This is a great site to learn about other cancer survivor's experiences.

You will likely live to see your grandbabies grow up to beautiful young ladies. Treatment will be challenging, but you can do it!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-20-2012, 05:14 PM   #7
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Re: I just found out I have breast cancer

Thank you for the encouragement I have been getting. The more I think about it the more I feel that a double mastectomy would be the best option. I had a second biopsy which showed a second lesion. So the right side is a goner. So I might as well make it a matched set. Hey I can have reconstructive surgery and get cute teenage boobies with a possible tummy tuck to boot. Who could ask for more.
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Old 09-20-2012, 07:18 PM   #8
evergreen
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Re: I just found out I have breast cancer

I didn't have a mastectomy, so I can't speak from experience. However, if I have a recurrence, I would definitely then go for a double mastectomy no matter what, because I agree about the "matched set". Not very scientific, but....
__________________
Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 09-20-2012, 08:00 PM   #9
NanaJoni
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Re: I just found out I have breast cancer

Cricket - my path was similar to yours (er-/pr-/HER2+++) and I elected to have a double mx with no reconstruction. You can see all that stuff in my signature. It seemed like a no-brainer at the time and after the surgery, my surgeon told me there was atypical ductal hyperplasia in my left breast (I had 2 tumors in the right) which would have meant that, most likely, I'd have been back doing all the chemo and treatments again in a few years. She said I "dodged a bullet". Some days I wish I'd gone ahead with recon but I was 62 at the time with a wonderful, caring husband who just wanted me to be around a long time. Now I've had a few complications (blood clots) that mean no elective surgery. Whenever I start feeling sorry for myself or having regrets, I look at my favorite picture of my kids, their spouses and my five grandchildren (ages 12, 9, 9, 7 and 5) and the doubts just seem to vaporize. I am almost 3 yrs out now and doing better than ever. You're facing a tough time, so trust yourself as you move forward. And keep coming here for support and info - these folks never let us down.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 09-21-2012, 03:25 PM   #10
JillaryJill
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Re: I just found out I have breast cancer

You can see from my signature....I elected for a double mastectomy. Right side had to be removed, left was my decision. I have dense breasts and did not want the worry of not trusting a mammogram result on the remaining breast. I am also 54 years old and the implant breast would have been so much higher than the remaining breast. Another reason I elected to have it removed. We have a lake house and I am in a bathing suit all summer. Had radiation, and then the implant surgery. Everything went fine and I have a great result. No regrets. And yes...there is so much hope with Her2. To quote my oncologist..."It's a new day" when she told me how successful the treatment for us Her2 gals has been. It's ok to be scared...but time will heal and you will do great!
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 09-21-2012, 04:54 PM   #11
Cricket
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Re: I just found out I have breast cancer

Is Herceptin difficult to tolerate? I have hypertension so I am worried about my heart. I don't have all the information about the cancer. I had a breast MRI with a biopsy. Boy was that an experience. This thursday I will have a consolation with the surgeon and plastic surgeon and decide what will happen next. I still think a double will be the best option for me.
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Old 09-22-2012, 05:45 AM   #12
JillaryJill
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Re: I just found out I have breast cancer

Herceptin is easy to tolerate. The beauty of Herceptin is that there are very few side effects if any for the majority of patients. My onc ordered a baseline Muga test for me. I am on blood pressure meds and cholesterol meds and was fine. Herceptin caused me to have a runny nose the whole time I was on it, but that was the only side effect I experienced.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 09-22-2012, 10:03 AM   #13
LeahM
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Re: I just found out I have breast cancer

Hi Cricket,

I too chose to have a b/l mastectomy. I wanted the new "girls" to match and I was afraid that in the future I would have to deal with this all over again. At 39 I have had many mammo's and u/s for other breast issues. Turns out I made the right choice as pre-cancerous changes were found in my left breast. From experience I will tell you that if you go the "expander" route I found that getting them filled slowly (no more than 60ml at a time) decreased any pain associated with the filling. You have plenty of time to get them filled as you go thru treatments so no rush.

I haven't had any trouble with Herceptin other than a constantly runny nose. I had a baseline MUGA scan of my heart and get re-scanned every 3 months until I am done with the H. I do believe that having your heart monitered while on H is a standard of care.

Best wishes to you
Leah
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39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 09-22-2012, 06:51 PM   #14
Cricket
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Re: I just found out I have breast cancer

I read that with mastectomies that there a drain. Is this easy enough to take care of? I am also concerned with my arm swelling from lymph nodes being removed. Has anyone had this experience and did it get better? Also, is there a lot of numbness after surgery? I will have movement in my arms or will be a problem?
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Old 09-22-2012, 07:10 PM   #15
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Re: I just found out I have breast cancer

I have noticed that some of the post show her2+++ . Are there different degrees of her2+?
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Old 09-22-2012, 08:12 PM   #16
evergreen
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Re: I just found out I have breast cancer

I had a drain for lumpectomy and it was no big deal. Nurses checked and cleaned it regularly, and it comes out when drainage slows.
Re lymphedema, I had lymph nodes out, and it is a risk. I bought a book that helps me prevent it happening...Lymphedema, by J Burt and G White, pub. 2005. I'm sure there are many books around. Some basic principles of do's and do nots, help with prevention. I also go for lymphatic massages about every other month, to a registered massage therapist recommended by my oncologist. She measured my arm in regular intervals, as a baseline should I develop any problems. A lot of these things sound scarier when you are trying to learn all this stuff. So far I have been OK.
Best of luck, and try to take it a day at a time!
__________________
Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 09-22-2012, 08:16 PM   #17
'lizbeth
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Re: I just found out I have breast cancer

Hello Cricket,

The drain is easy to use. I was a bit squeamish about it. Make sure you wash your hands thoroughly before handling drains. I had my husband help and we didn't think about that. I ended up with a nasty infection.

I had 15 nodes taken out. I had lymphadema in the trunk and breast area, but it was mild. Every woman is different. I ended up with Axillary Web Syndrome where the lymph vessels back up with fluid. It popped out in the crook of my elbow. The lymphadema specialist showed me a technique called feathering to move the lymph. It got better, I rarely have a problem.

I did have numbness. I hardly notice it 4 1/2 years later.

Nerve damage is always a risk, but rare. You shouldn't have problems moving your arms.

There are different amounts of overexpression on Her2. Herceptin was approved for the her2+++ patient. The only targeted treatment I'm familiar with for women with a lower expression of her2 is a breast cancer vaccine trial combined with Herceptin.

You have great questions. Right them down and ask your doctors - they will give you the most accurate information.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-23-2012, 04:27 PM   #18
chekmark
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Re: I just found out I have breast cancer

Cricket,
I did not have a double but I had one side done and yes there was a drain. There are also drains if you have reconstruction so by having reconstruction at the same time you can avoid the drains the second time. I had my reconstruction a year later. I found the drains annoying more than anything. I look pretty good and even with just the one side, my surgeon added a small implant in the other side for symmetry. It is a personal decision and one that you have to deal with forever so make sure you think it thru and are comfortable with your decision. I had 3 lymph nodes removed and have not gotten lymphedema but did have some slight swelling after mast. I am very active and use my arm alot. You will be advised to not use your arms at first untils drains are removed and you're healed. It helps to do some slight arm exercises when allowed to keep your shoulder from locking up. I would do the wall crawl several times a day and I am fine. My MRI also showed a second mass hidden behind the cancer mass but it was benign so try not to think the worst cuz it may be nothing. When we did the mast I had no cancer found.Just my input. Its a scary thing to hear that you have cancer but it gets easier. Herceptin was very tolerable. I really had no side effects to complain about except for the runny nose, my tear ducts clogged (I think that was from the taxotere) and my skin would tingle if I got over heated while in the sun.That was it. Good luck to you. Please keep us posted. Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 09-23-2012, 05:48 PM   #19
Cricket
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Re: I just found out I have breast cancer

Well this Thursday is consolation and I don't know if they will have an operation date that dat or not. I feel I am in good hands at the hospital I will be at. Charleston has a good cancer center. I have a lot of support from the people I work with.
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Old 09-25-2012, 10:31 AM   #20
teresamd0906
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Re: I just found out I have breast cancer

Hi Cricket - I was diagnosed with Stage 1 Breast Cancer in 2011 after the radiologist miraculously found a small tumor in my left breast. I am PR/ER - and HER2+ like you. I chose a double mastectomy with DIEP reconstruction since my breasts had dense tissue and I didn't want to worry about the cancer popping up on the other side and me not being as lucky the next time with finding it early. I must say I pretty much breezed thru it all - chemo and surgery. My oncol started me on chemo first so she could be sure that the cocktail was killing off the cancer cells. When I went for surgery 6 mos later the radiologist couldn't even find evidence of cancer being there! Great medicine and a Great God! I took 1 yr of Herceptin - my oncol said they want to make sure there aren't any micromets floating around my body somewhere that could park in another part of my body. The Herceptin didn't affect me at all - I have high BP and take meds for it. I also have high Cholestorol and take meds for that but the Herceptin didn't affect either. Your dr will monitor you thru a cardiologist. You will do fine! I think having 2 C-Sections was harder than this! Good luck to you and kiss those grandbabies!
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