Confused if I should do it

Mamita49

One lymphnode lid up. Still after 2 scans ( pet and chest CT ) they dont know if that one node is either the beginning of cancer or something else.

Node is not at all enlarged, and both scans say " Not specific" doctors say for saying, we have no clue.

Anyhow, given my history, the Radiologist would like to give a few " beams" to that node.

The node is not my concern, its the LOCATION.

Right behind my lungs.

I would have to be aware that the beams could damaged my soft tissue.

Should I go ahead, take the risk, or not.

My Onc says, go ahead, better kill the cancer in its infant shoes, ( If it is ???) but........Yes, its very dangerous due to location to burn your soft tissues.

TarheelMichelle

Mamita, yes it is a delicate area. Radiation damage cannot be undone and cannot be predicted.

My experience leads me to advise NO radiation for you. I had radiation to my spine and it damaged the nearby area badly (throat). I was not properly warned of this. I was told two weeks of esophagitis, max. It was painful for months. I can no longer run or do any aerobic activity, because radiation damaged that area, making breathing difficult. I am upset at how side effects were downplayed. I have permanent damage and I'm Stage IV. I already know my lifespan has been shortened; now radiation has damaged it. (BTW my breast radiation after my lumpectomy went great, no problems.)

There are other ways to treat cancer.

Best wishes to you. I hope your MO can recommend treatment that doesn't damage you.

gp193

Do you know about proton therapy? It's a specialized type of radiation that allows the beams to be more focused so as to avoid other healthy tissues.

dlb823

Mamita, I agree with Michelle. Without some real indication of whether that node truly is metastatic or even highly suspicious for being metastatic, I think the potential risk for lung damage is too great. I cringe every time I read my chest CT reports, which always mention prior radiation damage to my left lung -- something I was assured at the time (in 2009) would be very minimal, if any. Unless your oncs can give you some more concrete info' to go on, short of a second opinion, I think I would wait and see if the node changes at all in the next few months.

barbe1958

I got radiation pneumonitis from rads when I became stage IV. Not pretty and needed steroids and I'm still not good. I had radiation come up from my back for a certain area so that could be done for you. I'd be nervous doing a "just in case" dose of rads unless it was confirmed. Was it a bone scan or a PET?

theresa45

I recently (Nov 2016) completed proton radiation therapy to nodes in my neck, axillary and a node in my chest, all on my left side. My nodes lit up on PET/CT, but none were "pathologically enlarged" (largest was 1.2cm). I had a biopsy of the chest node (hilar node) which confirmed breast cancer. I had esophagitis (trouble swallowing due to radiation) that lasted about 10 days in the middle of my 6 weeks of treatments. My esophagitis was very tolerable and temporary. I have some swelling above my collarbone as a result of the radiation therapy, but I also had 5 neck nodes surgically removed which put me at a greater risk for lymphedema. The lymphedema is minimal now, but I'm concerned that it will become worse. I have not had a post radiation PET/CT scan because my doctors want me to wait 4 months for inflammation from the radiation to clear. My radiation oncologist is optimistic that the cancer in my nodes will be eliminated, but who know what the scan will reveal outside of the radiation fields.

My oncologist believes that radiation to cancerous nodes can extend survival in Stage IV patients who have limited or no other metastatic lesions in other locations. This is not standard of care. Not all proton centers will treat Stage IV patients and not all insurance plans will cover it. Some proton centers will cover or discount the cost of proton therapy when insurance companies stall or refuse to pay. I was treated by Dr Giap at Scripps Proton Center in San Diego, CA. Dr Giap is a dedicated, caring physician. In the end, my insurance company covered my treatment, although Scripps may have taken a discounted rate.

The radiation choice is a very personal decision. Side effects and benefits vary between patients, and there are no guarantees. Thanks to the responders here, you will be aware of the potential side effects. Overall, I feel lucky to have had access to proton therapy, but I'm still leery about other long term consequences that might arise. I would want your doctors to explain why they think that the risk/benefit balance is favorable for your situation. Your tumor load seems to be low (yeah!). However, you seem to have already used many of the hormonal treatments and your cancer is now PR-. This may be why your doctors believe that radiation is a worthwhile risk. I also would look into proton therapy to minimize damage to surrounding tissue.

Best wishes and I sincerely hope my information helps you! Theresa

Heidihill

I was told 10% of my lungs would be damaged from radiation to my spine, chest wall, axilla and nodes, so then I asked if the damage could be reversed and was told, yes, emphatically. This seems to have happened in my case as I am aerobically fitter now than I was even before diagnosis. Perhaps this would not be true for everyone. We are all different. It's worth asking how much damage and how long before injury is healed. Our organs can regenerate under certain circumstances. Maybe consult a lung specialist as well? Wishing you all the best.