Recurrence after 6 years NED

rosecal954

Hello everyone out there. I didn't think I would join this forum, but here I am. I am scared and shocked to find out I have a recurrence. Found out Monday when the Dr. called about the biopsy results. This has been an overwhelming week since last Friday, day of biopsy. I didn't think my Stage 1, Grade 1 cancer would come back and in 6 years. I do know cancer is very sneaky. I had lumpectomy and radiation Sept. 2013. All was good until July 2019 when magnifications views were ordered and micro-calcifications started showing up. I also have dense breasts. Stereotactic biopsy showed "scant atypia associated micro-calcifications possibly radiation induced." Fast forward to Dec. 2019 enhanced views showed increased numbers of calcs. and another stereotactic biopsy was ordered. Results showed high grade DCIS with calcifications. Saw the surgeon the other day and he said mastectomy was the only option since I've had radiation to the area previously. I have been reading many of your posts and know I am definitely not alone. There are the choices about reconstruction - I don't have a lot of choices due the radiation but I have a few have a few. It is extremely confusing to me but I try to read about it a little.. I see a plastic surgeon next week. My family has been very supporting. It has been hard to realize I'm losing a part of my body forever. Do I want to go flat and not worry about the surgery and reconstruction? I'm not sure if I want to look at myself flat on one side and not the other but pretty much decided not getting a bilateral mastectomy. I can't imagine looking in the mirror for the first time after the surgery and being reminded I have cancer but I do know this mastectomy is needed to avoid another recurrence. That is what my surgeon is saying. At the moment I'm open to reconstruction but my gut feeling is that I'll go flat and use bra prothesis or whatever is available. I know I'll get through this like last time but the 2nd time around may be even scarier. Does anyone else feel like this? As I'm writing this and this is good for me to do, I'm getting teary eyed again. Thank you for reading and I would love to hear from any of you on your thoughts.

Jaybird627

Hi rosecal,

I'm so sorry for your news.

I, too, had a 2nd DX but in the other breast. I had chemo and rads both times. Is yours in the same breast? No one ever told me there is a l

ifetime limit of

radiation except I know that you cant re-radiate an area (or so I think?). Since I am BRCA2+ they said BMX which I had.

Reconstruction for me has been a mixed bag. You can go flat now and choose to reconstruct at a later date. Keep in min that once skin is

radiated it can be problematic with reconstruction. If you want reconstruction you should go direct to implant if you are a candidate. I was not

according to my 1st plastic surgeon - not enough skin she said? Good luck with your decisions.

My 2nd BC came 13 years after the 1st. Cancer is a sneaky beast for sure!

rosecal954

Hi Jaybird627,

The cancer came back in the same breast just below. I know I can wait for the reconstruction and that's a good option to have. It's a lot to take in since Monday and It's so weird to say I have a recurrence, totally surreal. Thank for replying. Good luck to you pray you will be cancer free.

wallycat

I'm so deeply sorry you are dealing with this again. Cancer always feels like a gut-punch.

I had BMX right out of the gate because I didn't want rads; I also opted out of recon. There is a section here that deals with recon or not and the journey, so try and read some stuff there if you need help deciding. Since you've had rads, check with a plastic surgeon how viable a recon would be since that skin area will be difficult to stretch for an implant. You may be able to do DIEP or other types of surgery without getting implants (if you opt for recon). Many gals are concerned about the secondary cancers from implants too.

I was very scared I would not deal well with the BMX (I had lovely, large, responsive breasts) but I have done well. I looked at a lot of pictures to prepare myself. The recovery is certainly a lot faster. And yes, you can always decide on reconstruction later on. Julia Child had her one breast removed and wore prosthesis on that side...I watch some old, old reruns and I marvel how women had to deal with this quietly and without much outside support back then.

Best to you.

Spookiesmom

Reconstruction can wait if you want it to. I had bmx 8 years ago, rads on cancer side. I didn’t want more surgeries, risk of infection, copays. That’s an individual choice only you can make. Don’t let anybody pressure you.Came back last year in nodes on other. Surgery and rads again. Nobody said anything about lifetime limit. I think it means they can’t blast the same place twice, but a new site is ok.

I’d ask for clarification on that, or possibly find a new team.

buttonsmachine

rosecal, I'm sorry you're in this situation. It's hard for sure. You may want to consult with an NCI cancer center if you haven't already.

Also, surgery options, reconstruction options, and second radiation options, are not always set in stone. It depends a lot on who your doctors are, and where you're being treated. It's important to deal with the cancer, but be sure you're with the right team. Recurrences are more complex.

Just a few tips I had to learn the hard way. Best wishes to you.

helenlouise

I have had radiation twice to the same side. Then had recurrence and punch biopsy to confirm receptor status followed by surgical biopsy because not enough cells to confirm her2. The surgical biopsy took 16 weeks to heal. Unfortunately I now have a second recurrence on scar edge. Total disappointment but what can you do? MO has referred me for DIEP flap / chest wall skin resectionto remove skin Mets. See plastics surgeon this week. I am not convinced this will bring much joy but will go discuss. At stage IV I can’t see the benefit out weighing the trauma. I do agree that my chest wall has such bad blood supply from both surgery and twice radiation but the thought of more surgery is just devastating. Feeling like a bit like a guinea pig (no offense to those cute furry guys intended). I worry if I refuse this option my team will assign me as palliative.

buttonsmachine

helenlouise, I'm sorry you're going through this. I can't speak to your situation, but my situation was similar to yours. I had the chest wall resection for skin mets after a mastectomy, and it was effective for me - no more skin mets two years on. Anyway, feel free to send a message if you'd like. Best wishes to you whatever you decide.

rosecal954

I believe what my surgeon way saying --and that day was a blur in my mind - is that I could not benefit from rads again in the same breast. I am thin and have small breasts so looks like my options are rather limited. Thank you all for replying. My hospital is putting on a breast reconstruction class and program tomorrow night. There will be women there who have had various types of reconstruction as well as doctors to answer questions, It should be an informational night. Thank you all for replying. I wish you all the best.

buttonsmachine

rosecal, I hope the info session helps you. These are definitely hard decisions. Whatever you ultimately decide, I hope it goes smoothly for you.

helenlouise

hi buttons, both breast surgeon and plastic surgeon said no go for surgery pending confirmation of another biopsy being positive. As I have had radiation twice I am not a good candidate. The biopsy was again cancer. So no surgery for now. Which is sorta good cause I didn’t have to decide. Referred me to another MO who is ordering gene sequencing to work out all possible options for further systemic treatment. This is good cause I really thought I was at the end of treatment options.

Rosecal, I don’t think a second round of radiation is usual nor good. I have such poor blood supply to my chest wall it is problematic. Even the punch biopsy I had the other day is likely to take a very long time to heal. Especially cause it was on the tumor. Ouch!

Hoping everyone is doing as well as can be.

Ingerp

rosecal--I am so sorry to hear this. Including ALH ten years ago, I've now had three different occurrences of wonky cells. I just have this sinking feeling that some day it will be back. I'll always do a lumpectomy when that's an option, but I've often wondered what I'd do if I had to get a mastectomy. Part of me thinks I'd go flat. I can tell you my mom had a mastectomy 25 years ago (when they were over-treating--a doctor told her many years later that a lumpectomy would have been recommended then), did not have reconstruction, but found that living with always having to stuff her bra/swimsuit was kind of hard. Several years later she had reconstruction (and is doing great at 91, BTW).

All I can say is take your time in making the decision. You need to be comfortable with it. I like the concept of waiting on reconstruction. I know several women who've had nightmares with their new breasts, including life-threatening infections.