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Radiation with reconstructed implant

Phoebesnow
Posts: 572
Joined: Apr 2011

Hi,  I’m new on the breast cancer board and I have some questionS.  I have been diagnosed stage 1A with 45 isolated tumor cells in one lymph node.  My margins were close and the small tumors were fairly close to the skin.  I am multicentric and muti focal, which means there were 2 sets of tumors on opposite sides of the breast with LVI unde high powered microscope.  I have oncycote score of 9. I had implants put in at the time of my bilateral mastectomy.  It was thought that it would be unlikely that I would need radiation.  Is there anybody who had radiation with their implant?   I also have very thin, sundamaged skin.  Please tell me your experience.  Did anybody decline radiation and hormone therapy?  

 

Thank you you for your input.

RoseeBaby
Posts: 1
Joined: Mar 2020

Hi Phoebesnow, 

Thank you for posting. You and I were both told Radiation would be "unlikely". My cancer is listed as "recurrent" but prior discussions with oncologists and surgical oncologist it was said that determining if the cancer in the lymph node was new or if it were left over from the prior cancer is difficult. They were unsure. If the cancer was left over, that means chemotherapy did not work the first time and I will NEVER do that again.  My time line looks like this:

Cancer found in right breast. Recommendation was surgical removal as mass was too large to treat successfully with chemotherapy. 
Complete double mastectomy was performed with expanders for breast implants. Then 16 weeks of Chemotherapy followed by hormone blocker for pre-menopausal women. The type of cancer was mestastic carcinoma (stage 4) HR2 Negative. Cancer was found in 8/11 lymph nodes. Surgeon said radiation was not necesary at that time. But the raidial team wanted to do it anyway and I refused. I did the chemo and the meds. But then later.. I needed a second surgery.

After recieving 5 letters on textured breast iimplant causing Non Hodgkins Lymphoma, (cancer in the serum & scar tissue) I demanded to be seen. The plastic surgery dept didnt feel this was urgent. (orginal cancer removed in 2014 and this is 2019) so Fiive years later an MRI discovered cancer in a lymph node behind the implant on the chest wall. I wanted the medical surgeon to just remove it and then test for cancer type after but she biopsied then removed the node plus 8 more that turned out negative. The plastic surgeon replaced the textured cancer causing implant with smooth implants at that time.

But why did the oncologist insisted on doing a biposy prior to surgery. Which I didnt want to do. They arlready knew it had cancer so why biopsy? Procedures! After surgery The medical oncologist surgeon said NO FURTHER TREATMENT WOULD BE NECESSARY other than hormone blocker pill becuase my cancer is estrogen based. But She had to send me to a non surgical medical oncologist. 

The oncologist said I HAD TO SEE RADIOLOGY. this is where I began intensely quesitonsing the procedures. Why did I have to see a radial oncologist if no further treatment was necessary? I agreed to see radiatiologist ,but the oncologist explained that I am in a place where my treatment depends on how aggressive I want to be. She said i could just go on the hormone pill or if I wanted to be really aggressive she could presscribe chemotherapy again. But the raidaiton oncologist was adamandt about radiaiton being the best thing for me now, BECAUSE it is a reoccurrence.  There is the question again.. is it a reccurrenc or left over? Suddenly I was being yelled at, Its cancer!

My doubts hieghtened because again it was said there is no way to know if this was left over or if this was a new cancer in a lymph node. To me, a lymph node could have been carrying that cancer. Lymph nodes are supposed to absorb bad cells and wash them out of the body. But no one could tell me how long a lymph node can carry cancer before the cancer consumed it and deposited new cells into the surrounding areas. I wanted to DECLINE RADIATION and argued with the radiation therapist back and forth for 12 weeks. He won, but I am still not convinced this is helping me. 

The radiation kills all cells in a defined area. Burns your skin, can cause lymphedema because of where I am being treated, and because of how many lymph nodes have already been removed. It can also cause thyroid issues, trouble with my lungs and heart and cause skin cancer. PLUS there is NO GURANTEE it will prevent the return of this type of cancer and it can cause other cancers. So to me the scale was not tipping in favor of either direction. It seems to me, its the same whether I dont have it, the cancer could come back and if I do have radiaiton, the cancer can still come back. So why put me through more suffering? Use my time? Cost me my pay being out of work? Risking losing my job for the disruption? and why keep me in patient mode feeling awful when I could be living my life? 

This is supposed to be my last five days of radiation. My skin is blistered, it stings like poison or a hundred wasp bites. It gets tight and no ointment helps. They tell you to use Aquaphor,, but that has alcohol in it. I am nowt having to use an antibacterial ointment and pray that I dont get sepsis in the skin. I want to stop treatment now, but the doctor will not tell me if this at least put me in a place where most of the cells are destroyed. He inisists nothing is good enough except the full amount of time in treatment. I find this hard to believe. I think he is just being stubborn. Im sure he is very knowledgable and is good at what he does. Im just not sure he is able to think outside of his training. And that to me, is a very sad thing for patients now and to come. 

So there is my experience so far. Sorry its so long. I left a lot out. The plastic surgeon said that radiation can cause capsular contraction to the implant. This angers me becuase I had capuslar contraction for five years and just had it fixed with the second surgery for cancer removal and exchange of implants. (the plastic surgeon was supposed to fix it the second time) This is actuallyt the 3rd set of implants in 5 years. It finaly didnt hurt! and now radiation is putting me at risk of developing that pain again. I am tired of the medical people batting me around with their procedures. They are so busy, so many cancer paitients, that they cant seem to find time to consider each patient's entire case thoroughly. They are just running full speed ahead with their standard of care.  

I feel as though they got all of the cancer. They cant see anything else. So this radiation that I reluctantly agreed too is overkill of good cells in the body. They wont say it that way. They tell you its the most beneficial for your long term health. and then in the next sentence they say, we cant guarantee it will work. Its all a gamble. A nightmare of a gamble. The deicsion has to be ours and we have to be okay with whatever we decide. Easier said than done. But cancer is a business. And it is hard to negotiate in business when it crosses with your personal life.

Good luck to you whatever you decide. And try not to let my view get you down. I have to look at both sides of things. I dont trust all doctors. And I dont know why I agreed to this. I want to quit now, I wanted to quit last week, I didnt want to do this in the first place. But we are programmed to trust the doctors to know whats best for us. Im having a hard time with it. 

Im afraid I may not be of help to you. But I hope at least you have seen that you are not alone in your questioning. We are not given good options to consider. And I think it is high time the medical industry developed safer, non destructive treatments for patients instead of running us into the ground. It is my hope that in 3-4 years they will say, "oh we dont need to do that anymore. We have something better that wont hurt you and has a guarantee of working. But they dont have that yet. Sadly after all of this time. 

Peace

 

 

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