It's back.....

I was diagnosed at 41 and have been an MDA patient for 2.5 years. It’s busy and the wait times can be long but I’m comfortable here, feel free to ask me anything. And please know that it is possible to live pretty well at any stage.

So your situation is almost identical to mine. When mine returned, it came back right where the original tumor was. My MO (ex-MO) had previously blown me off and called me a worrier, BS sent me to PS...not because he did not take me seriously, but because he thought it was likely scar tissue. PS was 99% sure it was scar tissue. My very strong gut told me that it was cancer, so I asked him to be sure. He scheduled an excisional biopsy for that week. I got the call a few days later, form his nurse, that it was in fact a return of the cancer. Long story here about how I addressed it because our situations are so similar.

PS called BS and BS told him to have me come in that day. BS's nurse was supposed to schedule this, but instead, she decided his schedule was too full, and scheduled me 10 days from then. I had already ditched my MO and was seeing someone (since it was every 6 months) at a major medical clinic a couple hours away. I called them and they saw me a couple days later. I consulted with MO, RO, and BS there, and the information was very valuable. I liked them all except the MO, who very much minimized it.

Once I saw BS, he found out what his nurse did, apologized profusely (she retired a month later). I had to decide whether to do surgery locally or go a couple hours away. Ultimately, I decided for my PS and BS team to do it because they knew exactly where it was. PS came in very early that morning and marked me all up. He pointed out everything to BS. BS did the surgery. Since mine was between my pec muscle and my skin, they took out a chunk of the pec muscle, but did not have to change out the implant. PS was there in case they did, and had both implants and expanders on hand. They made sure they had clear margins. They also tried for sentinel node. This is not usually done with recurrences because there is often altered lymphatic flow, and they can be hard to find. Clinic I consulted with is doing research on it and recommended it...said they find it 50% of the time. My surgeon spoke to her and agreed to try. While they could not find the sentinel node, when he reached in manually, he felt what felt like a hard node and removed it. It looked like a hard node, and came back positive for cancer. 13 more were removed and were negative. Further pathology revealed it was in fact a second tumor in the soft tissue, not a node. Nevertheless, they got clear margins and burned it to hell with radiation. PET scan was clear. My new local MO did oncotype at my request, and it came back quite high, (which my gut said it would) so I did chemo again. Fast forward to today. To the best of my knowledge I am cancer free.

I am sorry you are dealing with this, and that your provides blew it off for so long. It sucks how hard we have to advocate for ourselves. I don't think that's the case with most other cancers.

PM me with ANY questions. You CAN do this!!!

Southern,

Like Illimae, I am treated at MD Anderson in Houston. There's nothing perfect this side of glory, but it is a well run place and they have the ability to hire the best of the best--everyone from the folks who take your blood to the docs. One thought: MD Anderson is accustomed to working with patients remotely. People come from all over the world for treatment, and they can direct a doctor in your area about the protocol they want for you. Our church is close to the medical center, so we end up having a lot of folks who are here for treatment become part of our congregation. One woman with carotid artery cancer, had to stay for treatment over Christmas for twelve weeks, but she's now home and had a complete response to chemo when her original prognosis in W. Virginia was a death sentence. MD Anderson even saved her eye, which she was told she would lose. She was able to do most of her treatment at home. I would not assume that you would have to stay here as she did. Her situation was highly unusual. If I can help you in any way, let me know.

Beesy

Southern, I did my radiation at an MD Anderson regional center near my home for ease. I'm willing to drive to the Med Center for other treatment, but 30 treatments (six weeks) would have been brutal. I felt comfortable that they were avoiding heart and lungs well--MD Anderson has a surface guided system that helps ensure you're lined up correctly and exactly as you were in simulation.

There are some places at big medical centers where you can stay at a very reduced rate (some even for free) during radiation. Ask about it when you have your consult. Then you would not have to travel.

Hi Southernbelle, I'm so happy your scans are clear! I too had a recurrence that they thought was really just the original cancer, detected at the biopsy scar just after I finished chemo, and I remember after getting a clear PET scan that I was flooded with joy to have the same old stupid breast cancer I'd spent many difficult months treating. A good lesson on perspective, I guess. I also then got switched from a plan for tamoxifen (which I had filled but not yet started) to ovarian supression + AI, and I also got sent for the full radiation as you desribe. It definitely has exacerbated issues with arm range of motion and strength, so I recommend you try to get in with physical therapy to at least get some things you can work on at home during your upcoming treatments when you may not have time to do PT visits in person.

Best of luck and keep us posted!

I think you are wise beginning treatment now and not waiting. You've been through a lot! I take calcium and have sporadically had calcium numbers that were a little high, but nothing crazy. Maybe ask them to look at it again at your next appointment and investigate further if it continues to rise. I did Taxol (12 treatments rather than dose dense high dose) and I did 4 dose dense AC. I tolerated them well. On AC, I took antinausea meds around the clock for 5 days (I even set my alarm at night). I did not have any nausea or vomiting. The antinausea meds can cause consitpation, so I ate things to help deter that. It all worked pretty well.

Hoping you get answers soon adn that the pelvis checks out okay.