Fear of radiation after lumpectomy

My “team” was also a joke. I even had a nurse navigator who I was told would be coordinating everything….another joke. I didn’t get very much info from my team, other than the standard information. I did a LOT of research checking the bigger cancer sites. After seeing the same information on risks over & over it was a pass for me. One of the Mayo moderators said it best, “with cancer, you’re the player, the referee & the coach in the game” on figuring it all out. I decided to not get radiation or take AI’s too!. I had a small area of DCIS, ER/PR+. Had a stereotactic biopsy which ended up removing it. I did follow through with a lumpectomy, for which the pathology report said there was no cancer present in the specimen. Radiation & AI’s were still recommended. I questioned the need for radiation since the biopsy removed it all & I was told it was as a precaution & was the “standard care” for DCIS. Oncotype DX test says I have a 9% chance of a reoccurrence. I have osteoporosis too so after also doing my own research made the decision for no AI’s. Also researched radiation & found it’s the “gift” that keeps on giving…..for the rest of your life & also if you have radiation once you can’t get it again if it reoccurs in the same breast. The only option then is a mastectomy. Both my oncologist & radiology oncologist said survival rates were the same if I did or did not take the meds & radiation. My thought is why go through all this then taking chances of creating other health problems? I didn’t feel it was worth it for a 3% decreased risk & a chance of another lumpectomy if I did have a reoccurrence. Another thought was I’ll be monitored every 6 months by getting a mammogram alternated with an MRI since I also have dense breasts. If there is a reoccurrence, it should be caught early enough to treat. Cancer is a personal journey so my decisions may not be best for others BUT I’m at peace with my decision to roll the dice.

Hi,
I also declined the radiation and aromatase inhibitors because I did not want the intense side effects to ruin my quality of life. My family was upset at first, but they know it was my choice. I did not want to do nothing, so I found a really good Naturopath and I am doing many natural treatments. One of them is taking the Artemisinin pills - one per day - which you can order on Amazon for $27.00 a bottle. There is Artemisinin that can be administered by intravenous, but it is not allowed in the province where I live. I am also doing Mistletoe injections which I give to myself - 2 to 3 time per week. I know these are allowed in the US if that is where you live. I am taking many other Homeopathic supplements as well as trying to follow a vegan/ vegetarian diet (about 75 to 80% of the time lol!!). I did have a partial mastectomy last February. When I told the surgeon in June that I had decided not to do the radiation and hormone therapies, she said I would likely not have a recurrence anyway. I am 72 years old,
and I want to have the best quality of life for the time I have left. This is a very personal decision, so each person must do what they really believe will work for them. I read a few books on preventing cancer the natural way. One was "Chris Beat Cancer' and another was "Keep Your Breasts". Somewhere I read that a big part in having a treatment work was believing in it. So, if you believe in the mastectomy/radiation/chemotherapy/hormone treatments, then that is what you should do. If you believe in the natural treatments, then that is what you should do. It is your body and your life that has to be lived, so you need to follow your heart. Good luck in whatever choice you make.

Update: I also forgot to mention that I have Osteoporosis also. My mom took Tamoxafin for 5 years after her breast cancer surgery, and now she has full blown severe osteoporosis with inability to stand up straight. It has crippled and incapacitated her. I don't want to end up like that. I got my Oncotype results after waiting 4 weeks. It showed a very low risk of recurrence (4%) with taking an AI and oncologist says it will be about 10% risk over a 9-year period if I don't take an AI. I was disappointed to find out the Oncotype test only tells whether there is a need for chemo, which I already knew there wouldn't be. My surgeon had advised that chemo would not be necessary based on my biopsy and post-surgery pathology results.
So when she had "good news" (i.e., no chemo), it was really deflating since I already knew that and was hoping she would say I didn't need radiation. Nothing was shown about risks or need for radiation! She couldn't even give me any information to evaluate whether radiation was a good option for me or not - despite it being recommended as a standard, "one size fits all" treatment.
When I asked what recurrance odds would be with radiation, she just said a "slight" benefit. I told her "slight" benefit isn't good enough. I feel like I have been given very little information with which to make a major life/health decision. If in doubt, I'm not buying into radiation. Since the risk difference is so small between taking AI vs. not taking AI, I'm not going that route either since my quality of life already sucks and I have so many other health issues with the EXACT same side effects. Why would I want to take something that makes them worse? No thanks.
I already had a compression fracture of my vertebrae when I was 47 due to the osteoporosis and it has greatly impacted my quality of life. That was in 2008 and I'm still suffering severe back pain. If a doctor can't provide any more compelling evidence and substantive data beyond "slight" benefit, I'm not risking getting leukemia and worsening my already bad osteoporosis, in addition to all my other autoimmune diseases. My mother doesn't want me to do it either since she is now suffering with the effects from a 5 year tamoxafin regimen. She doesn't recall the doctors telling her in advance that it would worsen her osteoporosis.
So far, I am very disappointed in this entire process and the lack of direction I have received from the "team" of doctors. There seems to be a disconnect between doctors. Yesterday I got a call from a radiologist to set up an appointment, after I told my oncologist I would not do the AI or radiation. Turns out my PRIMARY doctor has sent in an order/referral! Does this seem inappropriate to anyone since I already have an oncologist?
The whole process so far just feels like a major cluster. I truly question whether this broad-based, "one size fits all" approach is really recommended for the benefit of the patient, or the benefit of hospitals making more money. These "treatments" only seem to be recommended as an "insurance policy" and nothing more. Even then, the doctors do not provide any compelling reason to justify a risky course of action that has potential to cause more damage than benefit. I am still continuing to research on my own, since virtually all the statistical data I have found (albeit limited) has come from my own initiative. I wonder if others have had this experience with their medical "teams"? No doctors, nurses, etc. have been able to answer my questions, including why I am still feeling so cold all the time (my temp has consistently been below 97 degrees since surgery). Has anyone else out there had difficulty in getting straight answers from the medical community?

My story is I just had lumpectomy last week, 3 mm size. Estrogen positive, progesterone negative and HER negative. Tumor was actually removed when I had biopsy but surgeon still removed a golf ball size bit plus lymph tissue. Sentinel node was negative, hallelujah! Because of small size, may not get oncotype test. But will do genetic testing on about 30 genes. If any are bad, will do double mastectomy. Otherwise radiation and estrogen blocker for 5-10 years, the latter more concerning to me regarding bone health. So one day at a time.

Hi, I too am awaiting OncoType test to determine treatment options. I am concerned with the standard prescribed radiation/inhibitor for 5year plan protocols.
I took HRT for over 30years, so am currently experiencing the dreaded menopause symptoms. At 73years of age, will I benefit from years of AI or will it reduce considerably my quality of life. I have a family history of Osterporosis and Leukemia.
Let me know how your journey proceeds, I’ll be watching and hoping all goes well for you!

@rene1636 I’m not familiar w/ proton radiation. If you do that type of radiation, is it possible to radiate that breast again? My understanding is that If you have a breast radiated (usual radiation), you cannot radiate it again. Ask this question due to having a lumpectomy now.

@rene1636 I’m not familiar w/ proton radiation. If you do that type of radiation, is it possible to radiate that breast again? My understanding is that If you have a breast radiated (usual radiation), you cannot radiate it again. Ask this question due to having a lumpectomy now.

@rene1636 I’m not familiar w/ proton radiation. If you do that type of radiation, is it possible to radiate that breast again? My understanding is that If you have a breast radiated (usual radiation), you cannot radiate it again. Ask this question due to having a lumpectomy now.

I have researched Proton radiation & asked my radiologist but where I’m currently being treated it isn’t offered. If I do decide to get radiation I’ll most probably switch to another bigger local cancer center that does offer proton radiation. I think you’re correct, that it’s a safer type of radiation especially in the breast. Thank you for sharing the information!

I had triple negative invasive carcinoma I suffered from several orthopedic injury injuries and I’m in a wheelchair I also had gastrointestinal issues and I couldn’t get an aid during Covid which I would’ve needed in order to get through the chemotherapy because I live alone. My oncologist pushed the chemo and I tried very hard to get any when I couldn’t I realize that maybe God was telling me I really shouldn’t have it probably would’ve killed me I went to radiation over radiated and have horrible side effects from the radiation but this is everybody’s personal decisions you have to weigh all the factors. Quality of life was important to me if I was gonna not be here on the planet for a long time that I didn’t wanna spend it suffering I also am very religious very spiritual and I’m a counselor by trade social worker so I decided to use visualization and work on myself and with the help of God I’m in remission which is really a miracle it’s triple negative it’s hard to cure without all these strong treatments oncologist recommend but I went by my own instincts and intuition and I think that’s what you have to follow you have to weigh the doctors advice how you feel personally about your quality of life and where you are spiritually. You can buy an old saying all those things and you’ll come to the right decision sometimes the standard therapy is a one size fits all which doesn’t fit everybody so everybody has to make their own personal decision. It’s tough but at the end you have control and the best part of fighting cancer is that you don’t let it control you with fear. So all those Warriors out there I salute you for your courage those who went through chemo those who went to radiation and those who decided not to because that also takes courage. God bless you all