Tumor Invasion to Pectoral Muscle?
My tumor was in a very strange location- practically IN the cleavage- I mean, looking at the MRI it's right on top of the sternum (coming from the right breast) and was anchored there like a barnacle. MRI showed pectoral muscle and skin invasion (as I had a huge indent at the edge of my sternum as a symptom, then mammnogram and ultrasound missed it...).
22mm tumor and tumor in the pectoral muscle tissue after excision (no clean margins and he couldn't cut out anymore, as it is, cut out 60mm x 60mm x 30mm). Incision goes completely across my sternum through both breasts so he could close the wound. Very strange.
Just met with the radiation oncologist so going to do regular (lower dose) radiation with boost at the tumor site, probably about 6 weeks altogether. Meeting with the chemo/hormone oncologist next week will likely say no to both. Took Femara for 2 weeks prior to surgery. No, will not do that, no way, have heard the other drugs are about the same. Only reduces absolute risk by about 5 percent, side effects just not worth it for me. Same with chemo, this tumor very slow growing, chemo doesn't do much for slow growing cell (very low rate of mitosis). I live in Taiwan, they don't do tumor genetic testing.
But, the one or two medical papers I could find about invasion into the pectoral muscle and tumor cells in the muscle said the women had recurrence so not optimistic. Still wouldn't make me do chemo or hormones. Not sure why they will do whole breast radiation but, whatever. If things get too bad, I will stop that as well. More interested in quality of life than extending by a few years but being in pain.
Would very much like to hear from others with pectoral muscle involvement and tumor cells in the margin after excision. Did they do anything special regarding radiation (if you did that)? I also had some random spots on my spine during a whole body MRI so going in September for a spinal MRI to rule out metastatis.
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Hi, It is sad that any of us have to deal with cancer. I did not have your type or location of cancer. I want you to know I read your post. This a hard season that we are going through. Do your research and research again. I found we all have to be our own advocate in our health. Best to you, Diane
@margaretb I did have my original diagnosis in almost exactly the same spot. In fact it was a golf ball attached to my chest wall and rib, by the time it was removed. Didn’t really show on a mammogram and even though you could see and feel it. The needle core just came back as necrotic tissue.
My surgeon removed it, scraping the bone and removing what he described as half of my breast. It came back er+, pr-, her2+. Grade 3 and very aggressive. I was young (30s) so I chose to read, and read some more, until my eyes were on fire. I accepted, chemo, radiation and yes I took tamoxifen for 5 years and anastrazole for 10. There are side effects, but I am still here to complain about them almost 20 years later.
The one thing that my surgeon said that has always stuck with me is “the only good decision is an informed decision”
I can’t say the decisions I made are right for you, but they were right for me. I feel like I might be the toughest geezer in my circle of friends, but I still enjoy my life.
Do you have access to library materials for researching your type of cancer and treatments?
So have done a lot of research- I am a patent attorney and sometimes file biotech cases so no problem reading technical papers, I read technical literature all day long at work as part of my job. Right now mostly using Google Scholar and I can access full text of most articles through a subscription I have access to. It seems (in general) chemo is quite good on agressive tumors as it attacks cells that are dividing rapidly (like your hair!). But not much on very slow tumors like mine. Read some of the original studies on Femara and, seriously, in the population being studied the risk was reduced from 6% to 3% so not sure, at 59, that it's worth it for such a small reduction. Radiation seems more promising, but still not super optimistic about that either. And, yeah, so much for mammograms...the images I looked at from my last one (the fancy 3D kind, did in March) don't even go down that far- I mean, think about where your breast is positioned and, no, it's not looking at your sternum...the guy doing my biopsy kept saying "strange" and then the mammographer would answer, "very strange" guess they didn't know I can understand a lot of Chinese.
I am dragging all my files to a private pay doctor outside the national health system for a second opinion and there are some other places that will do second opinions. Have not yet met with the pharma oncologist, 100% he will recommond AI, strongly ER positive (over 90 percent). Everyone is on the fence about chemo (surgeon, radiologist) will see what he says (and what chemo drugs) then run and do research on my own. Typically after any appointment, I go down to medical records and get whatever latest report (pathology, MRI, CD with scans) so I can read it myself. They print it out for me in English, very kind.
In general, I don't get to speak to doctors very long- while the system gets you instant appointments and biospy results to surgery was exactly 2 weeks (did all the scans in that time), the doctor sees about 100 patients in a 4-hour window (the surgeon) and other doctors I have dealt with at least 50-70 patients in a 3-hour window. But, everyone gets seen, everyone gets treated, I can't really fault their system. Not to mention the incredibly low cost (I have maybe spent 200 dollars-US- so far).
Just not a lot of literature discussing pectoral muscle invasion with tumor cells still in the margin, I guess in more tumors it's not that deep and easier to get a "clean" margin. And the one I read not that optimistic (attached here) but only a couple of data points (Johns Hopkins studies).
Thank you so much for sharing your story, gives me a little bit more optimism.
Oh, also attaching a very poor MRI image (a photo of a low-quality printout, I didn't have a CD reading, coworker printed this out for me)- this is a cross-section, it is kind of hot-dog shaped I think, running down the sternum.
bjr (bjr.20201202.pdf)
@margaretb have you considered asking for a second opinion at the Mayo Clinic or other reputable cancer center? I was able to send all of my imaging and scans to them without having to be seen and was still given recommendations. The more information you have besides reading scholarly articles might help you make a decision on which path you should take regarding treatment. Best of luck to you!
Hi. MD Anderson, in Houston, is the top U.S. cancer hospital. I would suggest consulting with them, too. Please post again, with updates.
I am really glad to hear you are able to do research, that paper you posted pretty much mirrors what I found in 2004 for any tumor anchored to the chest wall.
I am also really, really happy to hear you are getting a second opinion. My knee jerk reaction, after losing a few family members to cancer was to say no to everything too. Boy am I glad for that surgeon and his encouragement. I know you said things move pretty quickly, do you have any idea when you will get a second opinion?
Check into proton radiation therapy vs. traditional radiation.
Yes, this is my thinking as well. Right now, going to nuke my right breast with X-rays, I mean, yeah, couldn't hurt but don't really see the point. And nuking that particular spot with X-rays seems a little too close to my heart and lungs to make me really happy. We do have some proton therapy here but it seems to only be used for head and neck cancers, there aren't a lot of machines. However, I could see if I could do it if I do it private pay rather than on National Health. This is possible if you want something like a PET scan. I would need to see a price tag on private pay to see if it is feasible, depends on what kind of fee schedule they are using, etc. If not, there is medical tourism, like Bangkok, when I lived in HK people ran over to Bangkok all the time for various procedures, and any complex dental work, as it was so much cheaper than HK (which, already is a LOT cheaper than the US). TW is cheaper (and better) than HK as HK has a mix of private and public and TW is mostly public.
Also would like to see or find if there were a lot of tumor cells in the margin? How much muscle tissue was cut out? Feel like there's a lot I still don't know.
I do have an appt. Wed. night at a breast imaging clinic run by a private-pay doctor (since mammograms and such aren't covered by insurance until your 40s so he does that type of thing). But seems to be good with imaging, bringing him my CDs and reports, see if he has any advice on where to go within TW if proton therapy is possible (I know of two centers within the greater Taipei area, again, just don't know if they would take me on).
Going Wednesday night, seeing if that doctor can get me into proton therapy (which is generally not used for breast cancer here and not all that many machines compared to the US). Or see what he has to say at all. Honestly, to get an entire half-hour consult (will pay for longer if it takes longer) is a rarity here, I literally have not spoken to any doctor here about any treatment (or biopsy results, or test results) for more than 5 minutes, if even that much. I did ask right after surgery, about what would happen and he indicated that it was all up to oncology at that point. The system works with amazing efficiency but the trade-off is that there is not a lot of discussion (and this with anyone, it's not just because of English because I always brought translators and most of the discussion was in Chinese for the technical parts about the biopsy and pathology and such).
My sister did her treatment at Dana Faber in Boston and was satisfied, she sent me a link to their second opinion program, yes, seems you just send them your stuff, then they send you a written report. Seems like a lot of places do that and I know that many of the top Bangkok hospitals do it as well (popular second opinion choice in Asia).
Still would be nice to have an interactive visit so I am hopeful for my visit Wednesday night with this local doctor, does a lot of YouTube videos that seem popular, speaks English, seems to be able to explain things very well. I can pay him for a further consult if maybe he finds out more from the pathology people (looks at slides, sees more "raw" data, etc.). Or maybe he contacts the proton therapy people on my behalf, explains my situation, etc. Again, happy to pay someone to do this (we are talking like $200 USD/hour not tons of money) and get treated locally as I have lived in Asia about 15 years my life and job are here so finding treatment here would be better and, long-term, yes, going to be here and going to need routine follow-up etc. So having a doctor who could contact his buddy at such and such hospital would just make things go so much more smoothly. Hopefully he gets interested in my case, wants to maybe research stuff on his own, talk to his own network, whatever. I am vaguely interesting just by being Caucasian (they do not see very many of us) so works in my favor, not just my weird location (which I can imagine is also interesting, as my slow-growing tumor, on its own, seems entirely uninteresting).