HELP Radiation begins Monday

kawilson
kawilson Member Posts: 9
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am 26 Female. diagnosed with 2A Hodgkins in March of this year. I completed 6 months of chemo, ending in September. I had to wait a month between my last chemo for my PET scan. I got the results and they were clear!! I am scheduled to begin radiation on Monday, and I am having some reservations on this issue. I am not nervous about the actual treatment or side effects. I am more concerned about the long term possibility of breast cancer. What do yall think about this? I can worry about hodgkins coming back if not radiated or possibility of breast cancer if radiated???
How did yall make this discision??????
HELP!!

Comments

  • AlloMan
    AlloMan Member Posts: 47
    #2
    Not having breasts, it was never an issue.

    Could the area be irradiated at such an angle so that the radiation misses your breasts?

    Check with your radiation doc, but I would guess statistically you're more likely to relapse without the radiation than develop breast cancer with it. Which do you prefer to worry about?
  • hinkley
    hinkley Member Posts: 12
    #3
    Congratulations on your clear PET scan results! My wife is currently going through 6 months of ABVD for Hodgkins and she is stage IIIA. The doctor has said that he will most likely not have her go through radiation after the chemo. From the most up to date articles I've read, they seem to be questioning the benefits of radiation after chemo versus the risks involved unless there were large masses in the chest area of the patient. I can't tell you what the right thing for you to do is, but I would definitely find out from your doctor what the most recent studies are recommending and what all of the statistics are before you make a decision.

    Best of luck to you!
    Peter
  • dpomroy
    dpomroy Member Posts: 135
    #4
    The consequences of Hodgkins coming back are worse than the possibility of breast cancer. Hodgkins patients see a cure more than 90% of the time, IF they get it all the first time through. If one little speck of that stubborn disease remains, Hodgkins comes back meaner and badder and very, very difficult to treat. I know. Mine came back and you don't want to go through high dose chemo and a stem cell transplant, believe me! Hodgkins hates radiation. It is your best assurance that whatever miniscule bit might be left will be mopped up. Plus the radiology of today is so much better than in the past. They are able to focus on specific areas without all the scatter. It's not that I don't worry about getting breast cancer some day, but because we have had cancer at all, we are at a higher risk to get another kind of cancer anyway. I just know that I wouldn't want that cancer to be Hodgkins again.
  • sarahu
    sarahu Member Posts: 8
    #5
    Looking back today, I would have opted not to have radiation after chemo. 5 years ago I was diagnosed with 2B. CT scans and gallium scan showed no signs of disease left after chemo. I developed a lung disease due to the radiation. My lung tissue is scarred, breathing is difficult. The one thing I wish I had done before radiation, was have pulmonary function tests. To at least have a baseline for where I'm at today. I had to be on prednisone for 2 years to stabilize my lung capacity. Luckily today, I've been stable for about 2 years.

    This is a very difficult decision. Another side effect little talked about is the scarring of any tissue radiated. The muscles and soft tissue where I was radiated are permanently scarred causing pain and less range of motion than I had before. If I had know this was a side effect, I probably would have seen a physical therapist or an occupational therapist to limit the scarring after radiation. Best of luck to you.
  • Graeson5682
    Graeson5682 Member Posts: 4
    #6
    Dear Kawilson,
    How did it go? I am in similar circumstances right now. I am 32 and was diagnosed with 2A Hodgkins in April. I also went through 6 months of ABVD chemo, which just ended a few weeks ago. My CT and PET scans were clear also (congratulations to the both of us!!).
    I had exactly the same concerns that you described. I worried that I would be curing one thing but causing something worse if I went with Radiation. Fortunately, I have a very good Radiologist who sat with me & my husband and answered all our questions.
    I know it's risky, but the risks of Hodgkins returning are greater than the risk of breast cancer or lung cancer, when you compare them with the rest of the population.
    I was very concerned about lung damage, because I developed Lung Toxicity from the Bleomycin. We asked about these risks. And I went through a series of Lung/ pulminary tests last week. They will track my progress so they will hopefully be able to head off unnecessary damage from radiation.
    You can ask your doctor about "sheilds" that they can put over your breasts to minimize radiation exposure. They are going to do that for me as well.
    Also, some hospitals have very sofisticated radiation machines (example the IMRT machine), which can target smaller areas and use lower doses of radiation. These machines map out the target areas in 3-D, so they can 'zap' the tumor areas with the highest dose and avoid lung, bone and breast tissue as much as possible. The statistics on tumors caused by radiation therapy are largely based on the "old" method ("old" as in 5 or 10 years ago), where they used higher doses and radiated larger areas of the chest. Make sure you are going to the best possible facility and you are confident in your doctors.
    I hope this helped. This is only my opinion, but these are the things I thought of when making my decision to go for the radiation. I'm supposed to start my first dose in 2 weeks and even though I've done as much research as possible, I'm still nervous! I hope it all went well for you. Please feel free to email me if you want to talk about it.
    Best of luck,
    : ) kate123
  • PennyP
    PennyP Member Posts: 12
    #7
    sarahu said:

    Looking back today, I would have opted not to have radiation after chemo. 5 years ago I was diagnosed with 2B. CT scans and gallium scan showed no signs of disease left after chemo. I developed a lung disease due to the radiation. My lung tissue is scarred, breathing is difficult. The one thing I wish I had done before radiation, was have pulmonary function tests. To at least have a baseline for where I'm at today. I had to be on prednisone for 2 years to stabilize my lung capacity. Luckily today, I've been stable for about 2 years.

    This is a very difficult decision. Another side effect little talked about is the scarring of any tissue radiated. The muscles and soft tissue where I was radiated are permanently scarred causing pain and less range of motion than I had before. If I had know this was a side effect, I probably would have seen a physical therapist or an occupational therapist to limit the scarring after radiation. Best of luck to you.

    Hello.... I'm new. I finished ABVD and radiation 12 months ago, and am having a lot of chest/side pain and shortness of breath. I can't even get my doctors to order a chest x-ray, as my CT last July was clear.
    What symptoms did you have, and what tests were able to dianose your lung problem?
    Any info would be greatly appreciated.

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