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
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