Still figuring it all out....My story

Hi FridayYet, welcome to the club that no one wants to join.

I also had a radial scar but I think because mine was larger they also called it a complex sclerosing lesion. Statistically, you and I are almost non-existent. The number of radial scars that turn out to be cancerous are infinitesimally small. And yet here we are. All along I was told 'this doesn't look like cancer, it doesn't have any of the typical markers.." Well, boo on that. It was cancer.

I had a surgical biopsy followed a few weeks later by a lumpectomy and just finished whole breast radiation a month ago (July 26 was last nuke blast). I only had one node removed (all the surgeon could find despite digging) and part way through radiation I started getting weird sensations in that arm, like the skin was too small, tight, which they say is a sign of impending lymphedema. I have been trying to keep it at bay since then but think I am losing the fight. For the first time ever I almost could not get my wedding ring off tonight!!

Recovering from burnt skin and under boob grossness took a while. My boob is still mottled pink and brown and slowly peeling. I hope that pinto look goes away. I hate it. But the INSIDE of my boob is still changing as now sleeping on my stomach hurts as there are hard, knobby chunks (?) in there. Internal bits and pieces are getting thick and miserable it seems.

Oncotype 11 so Onc said no chemo, but I am 100% ER and PR positive, so Tamoxifen for sure. I have posted about my resentment and fear of this drug in other threads. I have also posted that I have decided to take a 10mg dose instead of the 20mg dose. Reason being that the 20mg dose seems to be the most widely tolerated, but was never investigated as to whether or not it was the optimal dose. Just the most tolerated dose. Some small studies have shown that lower dosages keep a steady level of the drug in your system, with lower side effects, leading to woman more likely to take it the full 5 years instead of toss it due to utter physical and mental misery.

I hope you find your way. I am still struggling how to live a life where I plan to be 80 and also plan to not be here 5 years from now. I am messed up. Others here are much more together. I hope to get there. You will find lots to read and consider here. Good luck and hugs to you.

Interestingly enough mine all started with a radial scar in my left breast that I was going to get excisionally removed then found out by sheer accident of my suregons team looking at my son that I had something on my right that was not noted on my report. Turned out to be breast cancer. After I had mastectomy found out my left breast had no cancer. Meanwhile for a month I was so worried about if they would find cancer with the radial scar and it was my right boob out to get me.

Outside of waiting for insurance, glad the ball is rolling for you and you have your appointments set.

You are hormone receptor positive so makes you a candidate for hormonal therapy. Was chemo ever discussed? Onco test would be helpful in determining the need if it is questionable that you need it at this point.

My surgeon sent out my tissue for the Oncotype test and took over a week to come back. I believe I read somewhere that they hold the tissue for quite some time. Can't hurt to ask if they can send it out pending Insurance approval.

With your pathology I’d be extremely surprised if your OncotypeDX (if even tested) would be high enough to warrant chemo. Are you perimenopausal yet? If you don’t want the more dangerous SEs of Tamoxifen (risks of both blood clots and endometrial cancer) you might want to ask about ovarian suppression or removal so you could take an AI (which increases mets-free survival 1-2% over Tamoxifen).

When all you ladies had the original biopsy and it came back as a radial scar/complex sclerosing lesion did it show atypical cells? I am a little confused by a radial sclerosing lesion (diagnosed with one amongst IDC in the other breast). It showed no atypia or malignancy; but it is rather large at 2.4 CM x 3.2 CM. The surgical oncologist told me that this can be monitored instead of being removed. I am confused as i assumed because it was such a large lesion; excisional biopsy is the recommended treatment. In my biopsy it showed calcifications; and usual ductal hyperplasia as well.

All the imaging is showing distortion with spiculation; which is why they biopsied.

KatjaNL,

The reason I chose a double mastectomy was twofold. First, I had more than one tumor, more than one type of cancer, and both breasts were involved. I figured if I didn't deal with it now, I'd probably have to deal with it again in the future. Secondly, I did not want radiation. The best way to avoid radiation is to remove all of the breast tissue. For me, it was an easy decision.

Trish

Friday_Yet - Are you aware of the Editha House in central Phoenix? 16 apartments available to cancer patients for modest donation. google it. Also, can I ask who the Oncologist is that you've chosen to see? I live in North Scottsdale and am still collecting information.

Thanks!

Shelby , I had a radial scar upon biopsy because I had 2 tiny 4mm mass on sono. Everything was benign with it but because radial scars can sometimes have cancer by it they remove it. I wound up finding out I had cancer in other breast so did the double mx because I just couldn't do the 6mth surveillance,. The anxiety I had was bad. Add. that to the mix forget it for me. Plus my sister had breast cancer. I knew right away I'd do a bmx.

My blood bank told me that if I'm still NED 5 years after finishing treatment (in my case, letrozole), my blood would once again be accepted if it meets the usual parameters (hepatitis and HIV-negative and sufficiently high hemoglobin & hematocrit). And even if still not yet out of treatment, or Stage IV, a cancer patient can still donate corneas upon death