Radiation dilemma: Trachea area…

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SccS
SccS Member Posts: 78
edited June 2014 in Radiation Therapy - Before, During, and After

Hi all,

Need an advice of some rads “veterans” here…

My wife is 41. She will be starting radiation in few days. Stage III “a” or “b”... they’re not sure exactly . There’s a description of her case on an older thread if someone needs more info: http://community.breastcancer.org/topic_post?forum_id=91&id=791274&page=1 . HER2-, ER+, prior treatment she had huge lumps in right breast and multiple big ones in axilla. Also, one lump in the middle of chest. PET Scan showed an area that looks like cancer close to trachea. That area can’t be biopsied or surgically removed, so cancer there was never confirmed.

Received 10 x Taxol weekly. Two weeks after staring Taxol the Trachea lump disappeared. Shortly the rest of lumps got reduced as well. New PET Scan showed reduction of that trachea “thing” to undetectable level.  Then she has mastectomy. We asked not to remove all lymph nodes, so the surgeon removed only level 1 where all lumps were. He said level 2 looked good visually so he didn’t biopsied or removed it, following our request. Then she had A+C x 4 by-weekly.

So, the area close to trachea was only treated by chemo. Should it be radiated now? The reason I’m asking is because the only way they can irradiate that area is via a 90 degrees angle to body. So the beam will go to both lungs (partially), directly hitting spinal column and in close proximity to heart. Her Radiation Oncologist is not sure whether to treat that area or not since it was not confirmed as cancer. She kind of wants us do decide… Is it a good idea to irradiate trachea under right angle to the body? Do benefits overwrite the risk here?


They also want to treat the whole breast and axilla. What is your opinion regarding radiating that area by trachea?

Thanks!

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  • SccS
    SccS Member Posts: 78
    edited January 2013

    Anyone? I think I gave too much info...

    Let me simplify the question: How safe radiation to Trachea is, considering that cancer in there can not be confirmed? It's not exactly Trachea but an area close to it. Do benefits out-weight the risk here?

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  • luckypenny
    luckypenny Member Posts: 150
    edited January 2013

    Hello

    I can understand your need to get accurate info quickly.   What are your radiation oncologists' concerns , has he outlined the risks and benefits of radiating that area for both of you?  I didn't have radiation to that area, but I did in my axilla as well as my supraclavical and no cancer was supposedly there.  I don't know if that helps.  I think I would consult with medical professionals on this one, perhaps call several rads doctors for their opionion or consults.  Good luck

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  • SccS
    SccS Member Posts: 78
    edited January 2013

    Thanks!
     

    The radiation oncologist is not giving us probability, percentage-wise, of chronic complications. We just can’t get this info from her... But she said that there will be a direct beam towards one portion of one lung as well as trachea, spinal cord and so on. Usually they beam under a small angel to body for breast cancer patients. But in case of trachea the beam must be direct (right angle to body).

    The doctor first thought radiating trachea is overkill and will increase her chance of chronic complications. But then they discussed her case among other doctors and all agreed to radiate trachea…. So now she is pushing us to do it and said that we should trust her. But she is still not outlining risks… All those doctors in her team voted for radiation to trachea because they believe that it is cancer spread from main tumor from breast. But it was not confirmed clinically.

     Is a direct radiation beam like this a guaranty of chronic complications, such as chronic cough?  Any percentage of complications? Anyone?

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2013

    I am not a veteran but I did have 33 Rads treatments following a lumpectomy. There are risks both short and long term with chemo and rads but the benefits as you already know far outweigh the side effects. I have no clue what you/your wife should do and if it was me I would base my decision on what my ONC says. She is our lifeline from now on. I would insist on knowing what the risks are;  you have every right to know what they are so you and your wife can make an informed decision. There are people on this forum who elected not to get chemo or rads because of the possibility of long term issues. Keep in mind several people already had medical issues that would have worsened, according to their drs, if they were subjected to chemo or rads. This isnt a one size, fits all decision. I would be persistent with the ONC. She has consulted other drs and that is encouraging but at the end of the day you guys are making the call. It is her life and your lives. I know when I was having my RADS the techs were all so careful about not radiating any other part of my body but the fact is RADS can cause lung scarring and a chronic cough. I dont have a chronic cough and havent been tested to see if the lungs are scarred...no reason yet. Finally, you might want to do your own homework and check some websites about radiation, etc. and go armed with that when you consult with the ONC again. The problem for us when we are DX is we are inundated with information so we all need a helping hand to help write down and even digest the information. Good luck. You gotta have faith in your ONC; if you dont get a second opinion.

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  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited January 2013

    Cancer is sneaky. If the spot near trachea responded to chemo, likely cancer. Have the radiation. Hopefully it is fewer treatments than to the breast area. My mom had radiation to the neck x18 and is doing fine. Another friend just finished 33 for throat cancer. I would radiate. You don't state age that I saw, but if your wife is 65 or younger, get the radiation. We deal with what's next when we cross that bridge.

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  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited January 2013

    I would also say it is common practice for Oncs to discuss cases that aren't clear cut with other Oncs. It's like getting more opinions. If concensus was radiate, I would do it.

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  • SccS
    SccS Member Posts: 78
    edited January 2013

    BilateralBe…  and others,

    Thank you. My wife is 41. Well…. today we insisted on a looooong conversation with RO and it was rough. Long story short, my wife agreed for radiation… We are still NOT sure if that was right decision…. only time will tell, I guess….

    What troubles us it that the RO estimates risk of chronic lung complications as being 10% in her case. She said about 1/3 of the area of one lung will get direct beams… This is really scary, to be honest. They will beam whole area, including chest wall, lymph nodes above breast, breast itself (a flap after reconstruction), axilla and that area close to trachea…. Man, this is scary…  Has anyone here gotten similarly big area of radiation treatment?

    My other question is: do you really believe the RO is correct as to giving that number – 10% ?  That do you think?  We do fear lung complications….   

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  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited January 2013

    It sounds like your RO is giving you the full picture. 10% chance is still great. I was bilateral so I thought I had a huge radiation field, but they did target just the breast. Even for the breast only, the lungs get "clipped", but we have to forge on. My RO said he'd seen one case of lung involvement from standard rads in his career. Lungs are resilient - think of people who stop smoking. Your wife is too young not to try for the best possible outcome. I have a friend who had 2/3 of a lung removed due to a cancer and she is fine. You'll never regret swinging with the big bat for cancer. Good luck.

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  • Natlie38
    Natlie38 Member Posts: 39
    edited February 2013

    SccS, you are a wonderful husband to do all this research for you wife. I wish you both the very best. 

    My mom had oesophagus cancer in 1994 and was radiated in the spine. The cancer was gone but two years after her radiation she developed radiation myelitis. Life was terrible after that. She had tons of issues- bowel/urine incontinence, limited mobility, chronic nerve pain etc. 

    That said, things have improved a lot since '94. Radiation is way more precise and advanced now. I think your best bet would be to go to the best radiation facility in your region. A facility where they take breathing into account really well, something like the Calypso System (google and read). 

    And unfortunately cancer is such, one has to way the risks vs the benefits of treatment available. 

    All the best. 

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  • SccS
    SccS Member Posts: 78
    edited March 2013

    I want to post an update. My wife had just finished radiation and no, it wasn't too bad, fortunately.  So far no noticeable lung issues. No open skin, otherwise severe itching. I did give the Rad Oncologist a very hard time prior to staring treatment by asking questions.... (and no I don't feel guilty for that).  My wife and I want to thank you, people who posted your advices here, from the bottom of our hearts.

     Now she's facing Tamoxifen for 5 years.... Another test, isn't it?................

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  • Natlie38
    Natlie38 Member Posts: 39
    edited March 2013

    Thank you for updating us SccS. Glad your wife is doing fine.

    My best wishes to you both!

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