Radiation regrets...could use some emotional support:)

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Mama2boys
Mama2boys Member Posts: 7

Hi! I'm new to posting here, but have gathered so much information from other people's stories. I'm in need of some support. I'm 46yo and just finished 16 full breast radiation treatments and 5 boosts and am having regrets. I made it through the treatment with flying colors...very minimal skin irritation and breast pain and virtually no fatigue, but just recently learned about a long term side effect that I can't believe I missed. I research EVERYTHING to exhaustion and I am kicking myself that I missed this. I'm losing sleep over the chance of a secondary cancer occurring(sarcoma) from the radiation. So much that it's making me physically ill. I admit that I was told very briefly that it's very rare and a very low risk and when I asked how it's treated I was told by a mastectomy, but she never told me the prognosis is poor. I don't know why I didn't look it up, but my doctor made it seem like it wasn't a big deal at the time and I was overwhelmed. I felt like she was more concerned over heart and lung damage because I have small breasts than the secondary cancer. So here I am in tears wondering how I missed this important piece of information. I think if I had looked it up I would have opted for a mastectomy, but now it's too late. Can someone please help me ease my fears. If I could have a mastectomy now to prevent the sarcoma I would, but I'm sure it's too late and the damage has been done. I hope I don't sound silly, but I just can't stop crying over this revelation. Thanks in advance for your support!

Comments

  • vampeyes
    vampeyes Member Posts: 1,227
    edited May 2018

    Mama2boys,

    I am so sorry you are going through this, I'm afraid I don't have any words of wisdom. My guess is the sarcoma is very low for recurrence rate and not sure if a mastectomy would make a difference. From what I have read is that some breast cells could be left behind after mastectomy and still develop cancer. Not a 100% guarantee that's why I opted out of doing it.

    So I will offer you a virtual hug and shoulder to lean on.

  • klvans
    klvans Member Posts: 258
    edited May 2018

    My radiologist discussed this with me before I started treatment with him. He told me it is extremely rare and that in all his years of practice he's never seen a case of it. He put the odds at about one in a million. He said of course that doesn't matter if you are the one in a million. Statistically you have a greater chance of dying in an auto accident. In other words, chances are very very high that you won't be affected by this sort of cancer. Hope that helps.

  • Mama2boys
    Mama2boys Member Posts: 7
    edited May 2018

    Thank you! It does and that’s exactly what my husband keeps telling me. But, of course, I think what if I’m that one. I just need to get out of this funk and stop letting the “what if” consume me. I appreciate your reply

  • Mama2boys
    Mama2boys Member Posts: 7
    edited May 2018
  • Becca953
    Becca953 Member Posts: 99
    edited May 2018

    Please do not second guess yourself. There is much study being released that radiation is a huge benefit in breast cancer. It is recommended more and more to a wider group of patients. Also, the sarcoma risk is very small and it is something that typically occurs 20+ years later. Incidentally, there is also a risk of secondary cancer with chemotherapy. However, the immediate and short term benefits far outweigh what may happen decades later. You have to survive the now to reach the later.

    Another thing to keep in mind is that cancer treatments are advancing at record pace due to the human genome project completed in 2003. Targeted therapies, immunotherapies, and treatment vaccines are the new normal, although many need a chemo agent to jump start and assist them. Rather than focusing on chemotherapy most researchers are focusing on antigens and mutation targets. Pharmaceutical companies feel that the next 5-7 years are going to be groundbreaking in the cancer field. Curative? Who knows because cancer is complex. However, it will be more manageable. So, we all need to treat ourselves now with the best options we currently have to get to the future. If on the slim chance a sarcoma pops up in 20 years, there will most likely be better treatment. Remember statistics today reflect past medicine. You cannot predict future statistics because data from today's treatments will not be available until years from now.

  • klvans
    klvans Member Posts: 258
    edited May 2018

    I've made a conscious decision not to let worry consume me. Everyone has a limited number of days on this earth. I don't want to regret not embracing happiness whenever I can. I make sure I enjoy something everyday, sometimes it's as simple as listening to the birds sing... I hope you find peace.

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2018

    Every medical treatment comes with risk, but that doesn't mean those treatments are bad or poor decisions. And if you had had a mastectomy you still might have ended up with radiation. And mastectomy doesn't always come without problems. I am over a year out from radiation and honestly I am more scared that cancer cells escaped before surgery and are lurking somewhere else than I am of secondary cancer. These are things though that we just can't control even though we desperately want to. I have to tell myself stuff like this everyday--you are not alone.

    Try to rest in the realization that what is done is done, what you are worried about is really low risk, and celebrate that you finished radiation!!

  • JosieO
    JosieO Member Posts: 314
    edited May 2018

    Mama2boys,

    I think our colleagues here have given some very thoughtful comments, and I have faith in what they say. I just started my radiation, and in the planning appointments my Radiologist brought this same statistic up, but he quantified it as “maybe” one in every one thousand women. I accepted that without getting upset, and because I had some undissolved sutures I waited almost six weeks before my radiation started. During my wait I had occasional anxiety that I had rogue cancer cells floating around setting up new homes. Now having started radiation, I have become occasionally anxious thinking about things like “my thyroid is getting destroyed by radiation”; when I have no evidence of same. For myself, I recognize that these anxieties will decrease over time.

    Most importantly, I have a great team of physicians that I trust, so I think if something develops, I know they will be there to give me the verybest care. That gives me great peace of mind when these little anxieties pop up.

    Think positive thoughts, know your doctors are there to help if needed, and you can always share here, in an atmosphere of trust and support.

  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    I’ll put this out there the way my mom put it to me when I found out the long term possible SEs of chemo and/rads after having Hodgkin lymphoma at age 13:

    We had to do whatever needed to be done to save you from the cancer that will kill you now and not worry about potential cancers that might or might not show up later. If they show up in the future, we will deal with them then.

    I had max dose full mantle rads + rads to abdomen/pelvis. 10 years after rads - 1 spot of melanoma, treatment = excision. 11 years after rads - thyroid cancer that was found by chance due to enlarged thyroid that I insisted be removed, treatment = thyroidectomy. 30 years after rads = BC, treatment = BMX w/immediate DIEP flap recon and anti-hormonal therapy

    So yes, you may develop another cancer down the road from the rads, but if you don’t do the rads you’ll never make it to that point to see if you develop anything else.

  • Mama2boys
    Mama2boys Member Posts: 7
    edited May 2018

    Thank you all for your replies! I truly appreciate your support. It really has helped. I think with time I will come to terms with my decision. We are all so lucky to have a place like this to ask questions and share our stories, fears, successes, etc. Thank you again!

  • Mama2boys
    Mama2boys Member Posts: 7
    edited May 2018

    JosieO - Good luck with your treatment! I’m not sure what your plan is, but about halfway through my 21 treatments my skin started getting pink and I felt my breast was swelling. I started using Emu Oil and it was amazing! You would never even know I had radiation unless you look closely. I know everyone has their preferred lotion, etc., but keep Emu Oil in mind if you have trouble finding something that works.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2018

    As I sat with my sister in the room waiting for my Oncologist (now her Oncologist as she was diagnosed shortly after me), a young, very good looking Resident came in to talk to her about the dangers of chemo and radiation.

    After he got done rattling off the all-too familiar list, he said something to calm us down that makes me and my sister laugh every time we get in a worry funk:

    "Those secondary cancers all sound really bad, but you have to be alive to get any of that stuff."



  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited September 2018

    I am little bit in your boat--I fear side effects of radiation more than breast cancer. I just finished radiation post-mastectomy 3 days ago. I felt I rushed myself into the decision and didn't feel comfortable the entire time. What made it worse is I fell into a "gray" area-- some ONCs said yes and others said now. I have tissue expanders that will be impacted and lympadema risk not to mention my treatment was on the left side with 50 gray. Huge doses. I did it for two reasons-- to fight the cancer I have (as someone else said) and to be aggressive now while my kids are young. I went against all my principles and sacrificed my quality of life and also didn't listen to my surgeon who said not to get it (she is a woman). She said she would never get it. But I trusted the big wig ROs I consulted. Reduction in LRR was at most 10%. If I could re-do it, I would not do it or with someone else.


    I am starting to think this is just the gift of cancer we have. We have anxiety overall but have displaced it. We also are not sure of ourselves and so second guess our decisions. We are forced to make decisions while our bodies and minds are undergoing trauma. Not fair. It was not ever clear to me the right choice but I Just kept scheduling myself for the radiation and then went along with it even though my body told me NOT to enter the hospital on the first day I was to start.

    This has all thrown me into a depression. I can't sleep. I am in pain from the radiation -- taste sensations have changed and dry mouth. I hope they go away. I am too young for this. My life was just fine 3 months ago but I am told it will be fine 3 months from now too.

  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2018

    Why did your MO say to never get rads? The possible side effects? Everything has side effects. I had 33 radiation treatments. I never once considered not doing it. I had a lumpectomy prior to those treatments. I am 7 years out last month

    I could not live with myself if I had not done everything possible to fight the cancer. I understand you can get a recurrence whether you have rads or not but the odds are in your favor if you do have the treatments. I wasn’t willing to play Russian roulette with my life but that’s me. To each her own. Also I didn’t want to second guess myself or look back and say what if....

    Diane

  • Mama2boys
    Mama2boys Member Posts: 7
    edited September 2018

    LiveWellToday - sorry you are going through this. I also wish I would have taken more time to make my decision. If I had then I think I would have done things differently. And I also went through the treatment feeling it was a bad decision, but at the time I was overwhelmed. I try to keep pressing forward and not think about what’s done, but I occasionally have a bad day and the regret comes rushing back. I still have swelling and discomfort from the rads which is a constant reminder of my decision. So for now, I am trying to keep my body as healthy as possible with diet, exercise and supplements. I don’t worry as much as I did right after I was done and with time I think it will continue to get better. Please feel free to reach out to me anytime! I completely understand what you are feeling and I hope with time you will find peace in your decision. Btw...will you be starting tamoxifen?

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