First POST: Liver resection, hormones, Her2+++ Lots of Questions

[Princesswaffle]

Hi Everyone,

This is my very first post, but my sweet husband has been posting on our behalf for the past few months. I finally have the courage to ask all of you beautiful survivors the questions that have been lingering in the back of my mind. I know it has taken me a few months since my diagnosis of Stage IV breast cancer to write, but I feel the shock of the initial diagnosis has finally settled a bit and now I am learning to be an advocate for myself and this seems like the place to start.

I was diagnosed at 32 years-old from the start with stage IV breast cancer with one 3-4cm liver mass. I started treatment right away and have completed 4 of 6 TCH. I am also on Lupron, Zometa every 6 months and Vitamin D2 and D3 due to having a major deficiency.

I am blessed to say that my treatment has successfully shrunk my tumor to 1.8cm at its longest side (PET/CT) after 3 treatments.

Now for my questions: Please bare with me since I have so many

I am nearing the end of my treatment and I still need to make sure to clear my margins in my breast and go into radiation or have a single or double mastectomy. I am fine with both options, but the question of what to do first is what is highly concerning to me. I also do not want to take any shortcuts, but I do know there is no right answer.

My liver has only 1 mass and from the start I felt as if I am going to for the cure even if there is not one. To me that means resecting what is left of the liver mass after chemo or resecting the scar tissue if there shows to be any left on the CT scan. Our Liver doctor explained that live cells can live in the scar tissue.

I know resecting of the liver is still very controversial when it comes to breast cancer, but I would really love to hear if anyone has gone through something similar. My mass is in segment 4A which as far as I know cannot be done laparoscopy and needs to be done as an open surgery, so recovery will be much longer. IAnyone have this area resected laparoscopy. I do not seem to be a candidate for RFA since the mass is right next to the artery.

Have any of you had a liver resection surgery? If so, how did you manage hormone treatment along with recovery and balancing of what surgery to do first? Did anyone do some kind of chemo imbolization after resection on the other lobe just for reassurance that you got every cell targeted?

I know that TCH is a very difficult chemo, but I have had little to no side effects and was wondering if anyone of you have stayed on it for more than 6 treatments. I know that there is a number of side effects that could happen, but is there any evidence to show that having 4 more treatments could be beneficial?

My doctor suggested ( things can change dependent on the final pet scan after treatment) I go back in and try to get clean margins and do radiation. She mentioned that it may be a good idea to continue on a chemo pill, Tykerb, herceptin (Indefinitely), lupron even if we have reached full success of the mass in the liver becoming undetectable. The chemo pill would not be long term, but again would depend on how my disease responds. Then we go and resect the liver a little bit down the line. She is supportive of the liver resection.

I have a wonderful oncologist who couldn't be more loving and supportive through this difficult time, but I feel hearing from others that have been through this makes decision making a bit easier.

I am having a hard time understanding why I wouldn't start by dealing with the liver since it is already spread to the organ and deal with the breast area after the liver resection since the path show that it is DCIS left.


Lastly, i am interested in the HER2 Vaccine trial and am not sure if I fit the qualifications to be involved, but would love to hear from ladies that are knolwedable in this area. I am willing to travel if necessary to be part of the trial. Has anyone been through the trial? Side effects?


Thank you all so much for your support and knowledge during this difficult time!! All of you are so incredibly courageous!

Tumor Marker Tests
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11

HER2 Serum Test
5.9

CTC
0 ( 2x)

I have copied my Pathology and information from my husbands profile so that it gives you a clear background.


PATHOLOGY

* Sentinel Node 0/13
* ER+ 10% in invasive carcinoma & ER+ 80% in DCIS
* PR- (report said "mostly negative, only 5% positive in invasive, 10% in DCIS)
* HER/2+++ (3+ on ASCO/Dako in both invasive and DCIS)
* mBR Grade 3 (score: 8) "multifocal invasive ductal carcinoma arising from extensive high grade DCIS with comedo necrosis and calcifications"
* Invasive Tumor Size: 0.7cm
* Lymphatic Vascular Invasion: Suspicious
* DCIS polarization: Poorly Developed (Comedo Necrosis visible)
*
additional staging found a 3cm liver lesion, which was biopsied and confirmed to be breast

Margins (3 areas were removed)
1. Lumpectomy: True margin focally positive for DCIS
2. Right Lateral Margin Around Cancer: High Grade DCIS, margins clear
3. right true posterior margin excision: margin focally positive for DCIS
Additionally this was in pathology report
Resection Margin for Invasive Tumor: Clear 0.15cm

BRCA1/2 negative

Hi -
Steph N here posting from away from home.

You have certainly done a lot of work in forwarding your understanding of this disease and what is happening in your own body.

One thing that struck me is that your HER2 serum number is lower than mine! If that number of 5.9 is correct you are way within normal range and the chemos are probably doing the job of killing your tumors.
This is one reason I would wait and watch your liver and concentrate on the breast area. And you will continue on some targeted drugs which will also work to keep your liver clear. If there is no significant uptake in your liver, I would say you could watch it. You may find that where the tumor was will not even show a scar and the liver will regenerate.

I know a few women who did have liver RFA, but only one who had the resection. The SIR spheres seemed to be the least successful from the reports I know about.

You can try to work on your diet to help your liver. There are some detox teas that are good and I took Milk Thistle for a couple of years. My aim was to take the toxic load off my liver, since it is basically a large filter.

Keep asking the questions and you will get more replies. Glad to hear that you are tolerating the treatment so well. You must be a strong young woman to start with!

[Princesswaffle]

Hi Steph,

Thank you so much for taking the time to reply to my message! I really appreciate all of the valuable information. How often do you get your serum level checked? Does it fluctuate? Do you know of other women on this message board who have gone through resection surgery?

[Jackie07]

Hi Princesswaffle,

While Steph is on the road, you might want to use the 'search' function and read some of the old postings. Just type in 'Liver resection' in the search window, and you will be able to view them.

Glad to finally meet you. It was very nice for your husband to have posted messages for you. Welcome!

[kk1]

Princesswaffles;

First, so sorry you have to deal with this but you have found a great group to help you understand how to manage your disease. I was DX similar to you at 42 and spent a lot of time researching my options and talking to others on this site. You are what is referred to as Oligometastatic, and in the last few years treatment has become much more aggressive in terms of both surgical options and chemotherapy as physicians realize that there is a good potential for very long term remissions and possibly even a cure in this population.

In my case the strategy has been constant monitoring by quarterly scans, maintenance chemo therapy using biologics and hormonals, lots of exercise and good nutrition to keep me healthy and strong otherwise, and resections when small lesions appear. So far 2 liver resections and just recently 1 lung VATS resection. The lung resection turned out to be a granuloma and not cancer so there is some down side to aggressive surgery but a week later I was back to running, so given the info at the time I would do it again. I am in my 7th years of this strategy and I have to say my quality of life has been excellent. My Onc refers to me as being "lightly" treated in regard to chemo, so I have many options for the future if they are ever needed. I will send you a PM with my phone number if you want to chat.

[PatE]

Hello,
I was diagnosed stage IV after my double mastectomy, no one thought to run a pet scan before surgery. It was a hugh blunder but I'm just thankful to be alive. My Onc ran several tests before starting TCH, I have since successfully completed chemo. I have weekly herceptin treatments now.
Anyway, I had one met to the liver 2 cm. I opted to be treated by Cyberknife radiosurgery, three treatments with no side effects. I was treated for the liver in August 2008, my last Pet Scan in August 2010 showed my liver is totally clear. There was no mention of the liver other than normal activity along with other organs.
I am now battling a bone met, L2 spine which was treated in May of this year also with Cyberknife. The August Pet Scan showed that the met had decreased in size by about half. I expect the next scan to show that its gone.
When I met with the liver surgeon, his said I was a perfect candidate for resection. When I asked about the Cyberknife he laughed and said it was my life. I asked if I had Cyberknife could I still have the resection if it didn't work and he said yes. I am so happy that I choose not to have surgery, my quality of life is great. Surgery was really tough to recover from for me at least.
After my Cyberknife treatments I went to work with no problems, two weeks after the treatment to the spine I went to Italy for a three week vacation. I was able to keep up and see all places I had only dreamed of. I am confident that between Herceptin and Cyberknife I will live a long long life. I wishing good health for you, you sound like a strong person just know that it does get easier once you have a gameplan. The exercise and diet is also very important. Please email me if you would have any questions.
Pat

[flynny]

welcome! Glad that you have joined us and opened up to ask questions. I wish I could give some advice, but I don't have any to give at this time. I was just curious. How did you know about your liver diagnosis (dx)? Did your onc send you for tests right after your initial dx? Anyone in your family have/had BC? Where are you going for your treatments (tx)?

The women/men on this board are amazing and will give you some wonderful advice!

[Princesswaffle]

Thank you all so much for replying!

kK1 thank you for the private message, I really look forward to speaking with you.

Flynny, I found out that I had a mass on my liver just by a routine MRI for my breast lump before surgery. The MRI picked up a small portion of my liver which just happened to have the mass. The MRI was just for the breast, but because I am small the radiologist said the pictures just happened to pick up some of the abdominal area. After the mass was found all the doctors felt it was not metastatic cancer and sent me down a pathway of having two more contrast MRIs which were still inconclusive on what the mass was. The doctors felt it was just an adenoma, but they could not guarantee it since the characteristics of the mass did not look metastatic nor did it look like an adenoma. I had my lumpectomy, but my surgical oncologist at the time felt so strongly it was not metastatic she did not feel a liver biopsy was needed and felt i should just start treatment and continue with watching the liver. My husband and I were not happy with the wait and see approach, so we found a liver specialist and a medical oncologist who i love. My new oncologist said that I should start chemo right away based on my pathology and we would run a full PET to see about the liver. If the PET was run to begin with I would not have had to go through the MRIs and the fear of not knowing. The PET showed a high metabolic rate in the liver mass which is when I learned it was metastatic. I still held out for some hope and with the support of my oncologist went and had the liver specialist biopsy the mass. I wanted to do the biopsy to be sure and also to see what the pathology of the liver was.

I have no family history of breast cancer and I am also negative to the braca gene. * *

I hope I was able to answer some of your questions

Would still love to hear from some people who have finished TCH and then managed hormone treatment with surgeries. Did any of you continue with some kind of chemo even if there was NED for a small amount of time after the initial chemo? The idea of tykerb, chemo pill and tomoxifin really seems like so much medication. Well worth taking! But want to hear how people manage the side effects!


Thank you all again!

kK1, were your liver resections done as an open surgery?

[kk1]

PrincessW;

Both my liver resections were open. I'd like to hear more from PatE about the Cyberknife experience. Doing that for the liver is relatively new and I believe might be better than RFA, which does not work very well if the lesion is near a blood vessel, or of any significant size as the blood vessel acts as a heat sink as it is hard to effectively "heat" the whole area enough to kill all the cells.

[bejuce]

Dear PrincessW,

Just wanted to give you virtual hugs and support from another young mom with the disease.

YOU WILL BEAT THIS!!!

I had a double mastectomy and do not regret it one bit. As for the liver, the CyberKnife approach seems to be worth a try. I visited the company that makes the CyberKnife recently and heard about all sorts of success stories using the device to treat different types of tumors in different organs.

StephN mentioned the milk thistle, that may be a good idea to try.

Good luck and please know that you can count on us for questions and support anytime.

Loving hugs,

Marcia

[Joan M]

Sometimes local treatments work well even though a lot of oncologists frown on them. I had a VATS wedge resection for a single, metastatic lung tumor in spring 2007, and when it recurred a year later, a lung RFA.

In my case, I had the unfortunate, but rare, experience of a fungus growing in the cavity created by the RFA (I garden a lot and inhaled a common soil fungus that took hold), and after anti-fungal agents didn't work, I had to have another lung wedge resection to cut out the fungus.

I then had a brain met in fall 2008, which was treated with surgery and targeted radiation. But I've been cancer free since. I'm due for a brain MRI soon and hope it will be okay.

Joan