Tumor Invasion to Pectoral Muscle?

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).

Yes, I know about that but still, this one just seems WAY too close as there is no lung under the sternum. Fine if somewhere else, this location is just too strange. Like a tumor just right on the bone. Which is why proton would be better. So, yes, we will see. Did the breathing thing during CT scan (that is for a better image I think, not for protection) so I get how it would work...machine was programmed to just ask me at some point in the cycle, was pretty easy (machine even asked in English, pretty sure has a choice of voice programs as I doubt it was asking elderly Taiwanese in English, would not go down well).

Hi @margaretb
So glad you're educating yourself. I agree that knowledge is power. My original BC was stage 1, ER+ PR+ HER2-, BRCA2+ Ki-67 17% had a double mastectomy as only treatment. Surgeon told me 3-5% chance of recurrence, onco said < 1%. Seven years later, I had a BC tumor in my chest wall and into the pectoral muscle, but not into the bone. My BC is very aggressive this time Ki-67 50%. I had the tumor removed, but there was a positive margin in the pectoral muscle on the sternum side. Tumor was at about 1:00 position right side.

They did 37 radiation treatments on the right side of my chest, about a 8" x 12" area starting at the sternum and wrapping around my side. The last 9 treatments were boost treatments where they concentrated on the tumor area due to positive margin. It wasn't fun toward the end, but didn't seem to do any damage to my lungs. Skin healed. No lasting effects I'm aware of. Chemo is not on the table for me due to pre-x neuropathy and my oncologist doesn't think it would be effective against my cancer's personality anyway. I have been on Kisqali and Letrozole for 2.5 years since the radiation therapy was complete and so far so good. Side effects, but worth it to me.

I was concerned about my lungs with radiation too and they told me the new radiation therapy machines are so targeted that even the depth is well controlled so they did not expect the radiation to reach my lungs. If you move forward with RT, I would want to know if the radiation equipment at your facility is state-of-the-art. Prayers for you.

Hi. I don't remember if you have posted about your chest tumor finding before, but I am interested in how it was found. Also, what tests and types of exams did the doctors do in your yearly post- mastectomy check ups. I have your diagnosis. I was told the same percentages of recurrence. All I get is a Diagnostic mammogram on my remaining breast. And a cursory exam of my mastectomy site. So cursory, in fact, that I had cording that she didn't feel. I don't know what to do. Should I have an ultrasound, ordered by an outside doctor, on my mastectomy side once a year? What should I do?

Hi @colely I can't keep track of all the conversations at this point either so I could be repeating myself.

In answer to your question about my post-mastectomy follow-up care. I had a double mastectomy so no more mammograms. It has been 10 years so a little fuzzy on the early years. My surgical oncologist (comprehensive care breast center) actually handled my follow-up care. I would see her one visit, then the PA on the next visit, back and forth. All tests/exams were bilateral even though the cancer was only on the right side.

Years 1-2: Extended visit/manual exam every 3 months with surgeon/PA. Bilateral MRI at one year. I believe I had ultrasounds every 6 months the first year or two.
Years 3-5: Extended visit/manual exam every 6 months with surgeon/PA. Ultrasound annually.
Years 6-7 (would have been more): Extended visit/manual exam every year with surgeon or PA. Ultrasound annually. I found the tumor myself at the 7 year mark.

BTW, I've been through PT three times over the years due to cording. It really helps!

As for what you should do, definitely go talk to your doctor because it's weighing heavily on your mind. I certainly felt better having those ultrasounds every year. They are easy, harmless and the radiologist came in right after to tell me the results. Remember to keep up with your self-exams too. I actually didn't because with my now bony chest, scars, lumps and bumps, I found it hard to tell what is what. Is this a lump? Is that? It can be hard to tell, but when I found the real tumor, I KNEW it wasn't good because it felt so unusual. I actually found the tumor by accident in the shower. It was hard, painless, immobile and fairly round 1.2 cm. No symptoms of any kind.

Be vigilant, but very hopeful because the odds are in your favor. I have both the BRCA2 and CHEK2 mutations that added to the normal risk they were quoting me. That means my tumor suppressor genes aren't working right.

Did you go to a cancer center? Breast center? If not, check those out for more comprehensive care programs. Keep me posted. You're in my prayers!

Thank you for your detailed answer! I will be more vigilant in the future, with my self- exams. I have been told that what they are doing for me is the protocol for my diagnosis and that they won't change it. I can't go anywhere else right now. I went to P.T. for shoulder problems after surgery. Then to O.T. for cording. And now back to get steroid shot for shoulder pain. And then back to O.T. for NEW, LARGER CORDING, that just developed. Three years, 2 months and counting.

Hi @colely
I guess OT is probably what it really was for my cording. I say PT as the umbrella. PT/OT is a big time commitment, but so helpful. Were the shoulder problems caused by the mastectomy? I did have incredible ROM issues initially. I still can't lift my arms all the way up, but good enough for daily living. I had a couple steroid shots in my shoulder for a non-related partially torn rotator cuff years ago. It gave me about 3 months of being totally pain free each time.

I've found that over-using my arm like doing heavy duty housework really causes cording and swelling so I try not to overdo it. Maybe try to use your non-mastectomy side for scrubbing and stuff even if it's not your dominant hand. Learning to use your non-dominant hand for tasks is really good for your brain -- neuroplasticity -- perk!