Wish I had never,never done rads, DEEP REGRETS

Met RO for first time today. A big surprise. He said margins were clean after re-excision, but that, as I knew from path report, there were 3mm of residual ductal ca 2 cm from the margin and some LVI about 1 cm from inferior margin. The surprise was (and I don't know whether this was age related or not) he said I had a choice- I could go straight to the AI( 30% of women stop taking it,according to MO's, RO has talked with) or could do rads. We talked for over an hour. He said if I was the kind of person who would worry I hadn't done everything I could and would regret then I should do rads and sleep more easily. If, I woudn't worry excessively, I could go straight to the AI because with clean margins I was cancer free and the pill might very well kill off any rogue cells.I asked about hypofractionated and he said that's what he would do- 16 sessions to the tumor bed. I said I'd heard that maybe if there was a recurrence after the hypofractionated another lumpectomy and radiation could be done. His answer was why do radiation again if it failed the first time. Just do the lumpectomy..I told him every fear I had about rads and he listened very respectfully, predicted there would be very little skin effect, not much fatigue.. So,with this maybe soft sell, I got set up in the simulator and we start tx on April 30 for 16 days.. Now, of course, being me, it's sort of like buyers remorse, and I ask myself, did I make the right decision? DH and son say yes, but they're not getting all those grays and x rays shot into them..

Article about broken ribs after radiation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4560318/

cassiecanada: I am also on hormone therapy Arimidex (Anastrazole). It is making my bones ache. I feel like I'm 100 years old. I'm 70. I only started it last month because of other medical issues. I told the Oncologist that I couldn't tolerate the AI until I got over all the other intestinal problems. I'm going to try it as long as I can. I started CBD in January and I believe it's helping the inflammation and bone pain. So I'm going to do my part. I do NOT want the cancer to come back. Although they caught mine early and the tumor was very small, they only removed the sentinel lymph node, I am determined to do everything in my power to prevent it from coming back. I had such terrible side effects from the radiation I do not want to have to go through that again.

PS: one more thing to note about broken ribs. There are tens of thousands of women who have had broken ribs from breast cancer radiation. I found that info in about 5 minutes by searching for it. One woman had several broken ribs that they found in an x-ray, and then 2 years later was bending over to tie her shoes and another one broke. She felt it when it snapped. So I will have to be extra careful. I'm posting this not to complain, but to let others know in case they have rib pain to demand an xray or scan to see if they have chondritis or broken ribs. I don't know if the RO's are incompetent or lying but either one is not acceptable. Just tell us the truth and we will make the decision that is best for us. Hugs!

When I was first dx'd and I met my BC "team" (Nurse navigator, BS, MO, & RO) for the first time, the RO only told me what the treatment schedule would be. She never said anything about SEs. I was still shell-shocked from the dx and didn't have any questions prepared. But my husband was with me and he asked if radiation would weaken my bones. She acknowledged that radiation would weaken the bones near the radiated area and that they would be more prone to breakage. She didn't mention any other SEs.

I decided on a UMX and was able to avoid radiation. I hope other ROs are more upfront. (A technician who did one of my echo-cardiograms told me that she has seen women with heart problems years after having radiation on the left breast. When I told her that I was getting a UMX and hoped to avoid radiation, she thought that was a good choice.)

SE of radiation were downplayed when I met with RO in 2016 and on permit I signed. I had left sided BC and was told that "breath holding technique" would minimize effects on heart but was not told that lung, skin and nipple would be collateral damage. So now I have fibrotic tissue changes to breast that preclude any possibility of reconstruction (unless I have a mastectomy), nipple that due to 9 boosts hasn't been in correct position for 3 years (can't be seen when you look at my chest because it is so tucked under), had axillary cording (LE PT left finger prints in my axilla when she popped them) and have breast lymphedema that RO blamed on surgeon (he in turn blamed RO). I only had one lymph node removed so don't let anyone tell you that lymphedema only happens when you have multiple nodes removed. It is a lie!

Extra boosts necessitated by < 2mm margins for DCIS was never explained until 11/18. If I knew then what I know now, perhaps I would not have elected to have radiation and would have elected to have a mastectomy than have ongoing problems related to 34 radiation treatments that I found traumatizing. Techs were kind but not the Oncology RN and I hated every minute I spent there. Felt having to expose my breast was humiliating and had to put in writing that no observers could be there. Yes, I was asked if I would permit students and reps to be present during treatments. And for this I was paying for treatments via insurance? Finally refused to let them use photos taken during treatment since they were advertised as a "teaching tool" and could be used in RO's publications.

Cannot buy bras that fit since each breast is a different size with left smaller than right except when LE is present. Need to wear one with light padding since there is no nipple evident on left; looks weird to only have one head light in a t-shirt.

Was actually referred to PS by RO who told me damage was too severe to consider reconstruction without mastectomy and skin condition would be an issue even with that since healing would be dicey. I was advised to wait 18 months before seeing PS so I felt like I was lied to for that entire time. RO kept reassuring me that it was possible and provided false hope. I am still taking pentoxyfylline and vitamin E to undo skin damage.

So make sure you ask the pointed questions from the first visit with the RO. I feel like the money made on my radiation treatments was the incentive for the false hope and lies. There was nothing on my permit that mentioned the side effects I have described here. RO makes light of SE as well.

Betrayal: I too have lymphedema from one lymph node removal. I also have one breast way larger than the other and my bras don't fit. I have fibrosis. I stopped the pentoxifylline and vitamin E after 4 months. They said I should be on it longer than that. I begged the surgeon to do a mastectomy so I didn't have to have radiation. He said I would not be happy with it because I have large breasts. He basically talked me out of it. I would have been much happier with that than with all I have been through. I told him as much during my last follow up!! I guess I am "lucky" that it was my right breast so I don't have heart problems. The broken ribs was the last straw! The RO wouldn't listen to me and said my rib pain was "referred pain" from my breast and that she was NOT going to give me pain meds! I said I didn't want any pain meds! I wanted to know what was WRONG!! I argued with her and said it was 2 different pain types. My breast was sore. The rib pain was extreme and "stabbing" like a knife. She still didn't send me for an xray or CT scan! Looking back I should have demanded one. I was in such pain and was so emotional at that point I just caved. Good thing my daughter was with me. She heard everything. The more I think about all that happened to me, the more I'm convinced that both RO's were lying to me. One said he never sees anyone with the skin falling off after radiation The other said that's why she doesn't recommend the accelerated radiation. I am afraid to have anything done to my breast because I'm afraid that it won't heal. The skin is still so paper thin and fragile I have to be careful when I shower. It's been over 2 years. Thank God for this forum. I appreciate all the support here.

I had 33 radiation treatments. I was one of the lucky ones because I didn’t have unmanageable side effects. A little burning and fatigue halfway through the treatments was all I had to deal with. I know others who have suffered debilitating side effects to the point they had to quit the treatments.

One complaint though seems to be the same with all of us and that is no one bothered to enlighten us as to what the side effects could be both short and long term. To be fair I should have researched it more instead of just relying on what the doctor said. We have to be our own advocates. I was just fortunate.

Since my treatments I had to have a chest X-ray for something else and it showed lung nodules everywhere. Luckily it’s scar tissue and the radiologist said my X-ray was normal.

I resent doctors dismissing our complaints. They aren’t going through it. We are. Maybe if they did or someone they loved did they wouldn’t be so indifferent.

Diane

I am on pentoxifylline and I was thinking of stopping early but i guess I'll do the whole 6 months....

I was very enflamed by #33. But I have healed really well. What does fibrosis feel like?

I had the same problem, the worst sore throat of my life. It went on for weeks. But the techs and the RO were not surprised at all. Had to stop radiation for a long weekend, needed a breather from the burning pain. In the end I felt that I had been. “Overdone". Medium well done!

I have hot thyroid nodules and lung fibrosis from radiation. I was told my thyroid wouldn’t get radiation.

I did proton rads in large pat because I have been scared about the possible damage to healthy tissues. My breast was friend in proton rads too but it was only my breast and the rest of my tissues are fine. I am on pentoxifylline for 6 months for fibrosis prevention, as my breast got very enflamed by the end of rads. Everything seems to be healing well and I feel only a residual tightness in armpit at incision site.

Check into protons if you are facing rads. I was very happy w my experience overall though it was still difficult at the end.