Navigating Treatment Options for early stage 1

Question

Hi. I was diagnosed with early stage 1 in April. since then I have seen first surgeon for lumpectomy, successful removal of small tumor and no spread to lymph nodes, and now a Radiotherapist. I'm feeling like I am being viewed as a boob and not a person and finding it hard to get answers to my concerns regarding the treatment - my concerns re: treatment is side effects and other health implications, such as potential damage to ribs and heart. Given my cancer is small and not fast growing, my concerns are that the invasion of radiotherapy may have more impacts than gains. Are there any specialists I can talk to who can give me a more rounded viewpoint rather than just each of the specialists who obviously have a bias. Has anyone else had these concerns, or am I being ridiculous? (I honestly can't tell if I am just reacting to emotions or if I am being logical). Many thanks. All thoughts and perspectives appreciated.

cath62 · Answer

Hi @AmandaTR, totally agree with @Afraser. You are entitled to have answers to your questions and a good oncologist will explain their recommendation to you for a treatment.

While I had a medical background, I don't have the knowledge of an oncologist but I trusted mine and got on well with them. I had radium because I didn't have a mastectomy so it was important to reduce any chance of a stray cell remaining in my breast.

I will say that a small slow growing cancer is not a reason to not have radium as even slow growing cancers can shoot out cells. Radium reduces that risk of reoccurance. It was my choice was to keep my breast and my surgeon and oncologist agreed they could treat me to reduce my reoccurance chances and recover fully.

Have a chat to your gp or breast care nurse. If you don't like your oncologist ask your gp to refer to to one for another opinion.

Radium is very accurate these days so very little risk to other areas outside the breast tissue. Not sure where you get the idea the heart and ribs could be damaged. The internet is a dangerous place and it can lead us down rabbit holes.

I hope you get the answers you need so you can be comfortable with your treatment decisions and have no regrets later on. Best wishes

cranky_granny · Answer

Hi @AmandaTR. I have been really lucky with all but one of my treating team. It was the 1st rad oncologist that wasn’t too helpful. But the rest were really good at giving me answers and often I didn’t have to ask. I must have given them a dumb look so they would go onto explain better. I also just went with everything as i was in ignorance and lala land
I wast stage 2 at first diagnosis left breast with high hormone percentages 98 and 95. So the AI was always going to happen i had to have chemo first to try shrink the tumour off my sternum the radiation was booked for after the lumpectomy/ breast conserving surgery. The radiation was to give me the best chance of killing off any stray escaped cells around the tumour. Thing’s changed after after test results but thats a whole other chapter.

My oncologist has always said from the beginning that there were no guarantees but the aim was and is to give me the best fighting chance
with the radiation because it was left side and the position of the tumour i had to do Deep breath and hold. To move the heart out of harms way. After treatment there seems to be no ill effects on the heart. So it worked that way. With all our treatment which is supposed to be tailored to our particular situation. I know when my biopsy results came in they reviewed my particular plan to suit. But again they can’t and cannot give guarantees. Cancer is a beast with a path of its own. Having done everything through the one clinic meant everyone involved in my team were there at the discussion and the plan/options i had to go forward with. Then my medical oncologist with the nurse went through it all with me. I went along with everything as my knowledge of everything was learn as you go. And do everything i could to try for the best outcome possible. I was told that if anything got too hard they can adjust the treatment. I’m still here nearly 7 years on riding the roller coaster on the roundabout
In the end what treatment you go with is your decision and you need to be comfortable with that decision.

aska · Answer

Hi Amanda. I had Grade 2 stage 1 Lobular ER/PR +ve tumour and sentinel lymph nodes removed in May. Margins and LNs clear, and tumour small (<2cm)so didn't need chemo. Started radiation last week and will then go on to hormone blocking therapy.
I was told by rad oncologist too about heart, and their booklets referred to other side effects eg ribs.
However, my rad oncologist told me that surgery gave me 50% cure rate, add radiation brings it to 90% then with hormones up to 98% chance of being cured.
Hope this helps

afraser · Answer

Dear @AmandaTR

It’s never ridiculous to want more information. It’s also worth considering that specialists will a) know their own fields well and b) are very likely to want you to have the best chance of full recovery and no recurrence. But they should be treating you as a patient, and an individual patient at that. A good oncologist should be able to discuss your concerns and provide you with some idea of the pros and minuses. I didn’t have radiotherapy (I had more extensive surgery) so I can’t help but I am sure your GP or even your surgeon may be able to recommend a broader view. My surgeon recommended my oncologist - I did check him out, found his qualifications and experience good and, most important, grew to
like him as a person. Irrespective of how long you may be with your medical team, trusting and liking them matters. Best wishes.

amandatr · Answer

thank you for your replies. So far I have seen surgeon, radiotherapy oncologist and today medical oncologist - it seems not one of them can answer all my questions. I will reach out to the nurse to get her thoughts too - thank you.&nbsp; My info re: radiotherapy side effects came direct from the radiologist. I agree internet can be dangerous but am really struggling how to be fully informed - eg. I asked the medical oncolgost today what the benefits of doing both radiotherapy and hormone therapy was, and she didn't know. She only knew the stats on hormone therapy. If anyone knows the combined stats, please do let me know. Also, how long do the benefits of radiotherapy last? (I will email the radiotherapist, I forgot to ask her)

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