Fear of radiation after lumpectomy

Posted by diane12 @diane12, Apr 19, 2018

I was seriously thinking of refusing radiation after lumpectomy because I had complete removal of tumor with wide negative margins. I was convinced that there would be no lung, rib, or heart radiation by using the prone(lying on stomach) with breast hanging down. They have been very careful with treatments & very accommodating so after 4 treatments I am feeling more secure by my decision to do this to ensure all cancer was caught.

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@deerfield

I was diagnosed with DCIS grade 2 ER/PR +. I had a lumpectomy with clean margins. When i was diagnosed I consulted two surgeons from two different hospitals. One surgeon from
A leading cancer hospital said a lumpectomy with one week of radiation because I’m 71 years old and the second hospital and surgeon said radiation and 5 weeks of radiation. That’s a big difference in protocol. Has anyone only had 1 week of radiation?

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I only had 1 week! Just finished in December. It was called “Fast Forward” protocol and was done at Mayo Rochester. They integrated the whole breast radiation with the boost to the tumor bed, all at once.
My husband has Advanced Prostate Cancer, and with all of his treatments, I just did not have time for a more extended treatment program. I was very pleased with Mayo and my RO.

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@tctredwell1

Dear gallbooboo,
Thank you for your reply. With my team, everyone recommended radiation. I wasn’t happy.My radiation oncologist said the chance of recurrence was 30% over a 10-year period without radiation and 10% chance of recurrence over a 20-year period with radiation.
I’m 67, soon to be 68, and chose the “10% chance of recurrence over a 20-year period” option.
I’m just hoping it’s the right decision.

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I am 70, and just finished radiation in December. It was really easy; to me the worst part was the position for my poor arthritic shoulder.
I was lucky, though, in that I had mine at Mayo Rochester and they were able to complete it in 5 days.

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@galbooboo

I had a lumpectomy 9 days ago for DCIS stage 0. No radiation was the recommendation by my surgeon. She is in favor of hormonal therapy and I will consult with an oncologist about that but I am not yet convinced that even that is necessary. My low-grade tumor was very small and was removed with very good margins.
Since radiation can only be used once, I will reserve that treatment in the event that a more serious cancer recurs in the future.

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Dear gallbooboo,
Thank you for your reply. With my team, everyone recommended radiation. I wasn’t happy.My radiation oncologist said the chance of recurrence was 30% over a 10-year period without radiation and 10% chance of recurrence over a 20-year period with radiation.
I’m 67, soon to be 68, and chose the “10% chance of recurrence over a 20-year period” option.
I’m just hoping it’s the right decision.

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@tctredwell1

Hi all. Next week I’ll be scheduling radiation treatments after my bilateral lumpectomies. The plan is for radiation treatments every day, Monday through Friday, for 4 weeks. (I have Stage 0.) Doesn’t that seem like a lot?

After that, I see my oncologist about AI meds. I will start the medication if recommended but if it really makes me sick and doesn’t get better over time. I’ll discontinue.

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I had a lumpectomy 9 days ago for DCIS stage 0. No radiation was the recommendation by my surgeon. She is in favor of hormonal therapy and I will consult with an oncologist about that but I am not yet convinced that even that is necessary. My low-grade tumor was very small and was removed with very good margins.
Since radiation can only be used once, I will reserve that treatment in the event that a more serious cancer recurs in the future.

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@rene1636

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.

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I had my operation in 2018. the chance of recurrence was 4% so I decided on no radiation and no medication. In April 2022 cancer came back I had my operation on Oct 19, 2022. still decided no radiation no medication. I am 80 have peace of mind not worry very active in good health
quality of life is very important to me. so you took the good decision in my opinion.

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Hi all. Next week I’ll be scheduling radiation treatments after my bilateral lumpectomies. The plan is for radiation treatments every day, Monday through Friday, for 4 weeks. (I have Stage 0.) Doesn’t that seem like a lot?

After that, I see my oncologist about AI meds. I will start the medication if recommended but if it really makes me sick and doesn’t get better over time. I’ll discontinue.

REPLY
@deerfield

I was diagnosed with DCIS grade 2 ER/PR +. I had a lumpectomy with clean margins. When i was diagnosed I consulted two surgeons from two different hospitals. One surgeon from
A leading cancer hospital said a lumpectomy with one week of radiation because I’m 71 years old and the second hospital and surgeon said radiation and 5 weeks of radiation. That’s a big difference in protocol. Has anyone only had 1 week of radiation?

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I had a lumpectomy followed by 1 week of radiation twice a day for a total of 10 sessions. It's been one year & I've been experiencing breast swelling ever since.

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@rene1636

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.

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renel1636, I agree with you 100%, quality of life! I was stage 2 I am now taking proton
radiation, but not taking the pill. I get checked also every6 months, so I would think it would be
caught, but now I also want ultra sound with mammogram. I received a letter telling me all
was good, then one of the doctors spotted it, it did not show up on the mammogram.

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@shortie0650

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.

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I was diagnosed with DCIS grade 2 ER/PR +. I had a lumpectomy with clean margins. When i was diagnosed I consulted two surgeons from two different hospitals. One surgeon from
A leading cancer hospital said a lumpectomy with one week of radiation because I’m 71 years old and the second hospital and surgeon said radiation and 5 weeks of radiation. That’s a big difference in protocol. Has anyone only had 1 week of radiation?

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@dogmom23

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?

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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.

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