For breast cancer, I was supposed to have (I can’t quite recall, but I think this is the number) 26 sessions (same dose over more time). My radiation oncologist made a mistake and didn’t update my plan from 16. I ended up with 16 sessions. 5 months later (one lymph node removed during surgery 2 months prior to the start of radiation), I developed lymphedema. I can’t help but wonder if I extending the time that I took to “eat the pizza” would have been gentler on my tissues and helped me to avoid lymphedema. Thoughts?
The (early) data on shorter treatment regimens in breast cancer says the long term side effects are equal. And what exactly causes lymphedema is not well understood in my opinion. We have these retrospective studies that suggest this or that but then it happens out of the blue. So I don’t know if it would have prevented your lymphedema, honestly. Not a great answer, I know.
I just read your last post - loved it! It would be so dang awesome if the N.I.H. scientists figured out how to cure breast cancer lymphedema. It’s amazing to me that such a seemingly simple ‘plumbing’ problem is so lacking in answers and a cure!
It is a pity that they did not have more knowledge of radiation back in the 60's and 70's. As a result of so called safe radiation treatment back in the 70's in my late teens the results from my 40's on was life changing. Back then they used radiation treatment for non cancerous conditions and I had a course of radiation treatment for acne on my chin believing that it was perfectly safe. In my early 40's my thyroid gave up and my oral lichen planus started to become very painful making it difficult to eat. Then when I was 59 I was diagnosed with jaw cancer as a result of the lichen planus. Over time I have had a mandibulectomy and 2 maxillectomies all from a supposedly harmless treatment in my youth. If I knew then what they now know there was no way I would have had the radiation treatment.
Oh man, Lyn. I have treated several patients like you over the years who received radiation as children for benign conditions. You are absolutely right that we know so much more now. The careless use of radium cost an untoward amount of pain and suffering. Thank you so much for sharing and for reading.
Good information and insights, Stacy. When I had five weeks of chemoradiation for my Stage IIIC colorectal cancer in late 2022, side effects started sometime in the second week. By the fifth week, while an inpatient, I was vomiting and had diarrhea frequently, and I was very sick. I completed all five weeks, but it took another two weeks in the hospital to recover enough to go home. I hope I'm never that sick again.
Wow. That really sounds awful, Mikel. I like to think we are doing better at anticipating and managing side effects, but as your experience shows, there is still much room for improvement. Thank you so much for reading and sharing.
What about the fact that, as a lung cancer patient, I get multiple CTs per year: as frequently as every 3 months, CT of chest AND abdomen/pelvis, with AND without contrast. Am I not getting a quadruple-dose of radiation every time? That very quickly adds up to more than 50 mSv, not to mention 20. I'm inclined to continue to keep my scans at a minimum and voice concern about exposure. Since I've been expected to die, there is little incentive for the doctors to do so.
Hey Susan. The NEJM featured this commentary addressing the exact issue you raised. It’s a bit technical but a great overview of the pros/cons of surveillance.
I’m not sure of your stage or if you are still undergoing treatment. For advanced/incurable lung cancer, the risks of lung cancer coming back likely outweigh the risks of x-ray exposure although you are right to be concerned. If you were treated curatively for Stage 1-3 lung cancer, that scan schedule may be excessive per the NCCN guidelines which I’ve attached below. It is certainly worth a discussion with your doctor about the risks/benefits of every 3 month imaging.
Well. I can’t seem to leave a photo but you can look up the NCCN guidelines for your cancer. The recommendations for surveillance scanning will be included.
For breast cancer, I was supposed to have (I can’t quite recall, but I think this is the number) 26 sessions (same dose over more time). My radiation oncologist made a mistake and didn’t update my plan from 16. I ended up with 16 sessions. 5 months later (one lymph node removed during surgery 2 months prior to the start of radiation), I developed lymphedema. I can’t help but wonder if I extending the time that I took to “eat the pizza” would have been gentler on my tissues and helped me to avoid lymphedema. Thoughts?
The (early) data on shorter treatment regimens in breast cancer says the long term side effects are equal. And what exactly causes lymphedema is not well understood in my opinion. We have these retrospective studies that suggest this or that but then it happens out of the blue. So I don’t know if it would have prevented your lymphedema, honestly. Not a great answer, I know.
I just read your last post - loved it! It would be so dang awesome if the N.I.H. scientists figured out how to cure breast cancer lymphedema. It’s amazing to me that such a seemingly simple ‘plumbing’ problem is so lacking in answers and a cure!
It is a pity that they did not have more knowledge of radiation back in the 60's and 70's. As a result of so called safe radiation treatment back in the 70's in my late teens the results from my 40's on was life changing. Back then they used radiation treatment for non cancerous conditions and I had a course of radiation treatment for acne on my chin believing that it was perfectly safe. In my early 40's my thyroid gave up and my oral lichen planus started to become very painful making it difficult to eat. Then when I was 59 I was diagnosed with jaw cancer as a result of the lichen planus. Over time I have had a mandibulectomy and 2 maxillectomies all from a supposedly harmless treatment in my youth. If I knew then what they now know there was no way I would have had the radiation treatment.
Oh man, Lyn. I have treated several patients like you over the years who received radiation as children for benign conditions. You are absolutely right that we know so much more now. The careless use of radium cost an untoward amount of pain and suffering. Thank you so much for sharing and for reading.
Good information and insights, Stacy. When I had five weeks of chemoradiation for my Stage IIIC colorectal cancer in late 2022, side effects started sometime in the second week. By the fifth week, while an inpatient, I was vomiting and had diarrhea frequently, and I was very sick. I completed all five weeks, but it took another two weeks in the hospital to recover enough to go home. I hope I'm never that sick again.
Wow. That really sounds awful, Mikel. I like to think we are doing better at anticipating and managing side effects, but as your experience shows, there is still much room for improvement. Thank you so much for reading and sharing.
What about the fact that, as a lung cancer patient, I get multiple CTs per year: as frequently as every 3 months, CT of chest AND abdomen/pelvis, with AND without contrast. Am I not getting a quadruple-dose of radiation every time? That very quickly adds up to more than 50 mSv, not to mention 20. I'm inclined to continue to keep my scans at a minimum and voice concern about exposure. Since I've been expected to die, there is little incentive for the doctors to do so.
Hey Susan. The NEJM featured this commentary addressing the exact issue you raised. It’s a bit technical but a great overview of the pros/cons of surveillance.
https://www.nejm.org/doi/full/10.1056/NEJMp2414159
I’m not sure of your stage or if you are still undergoing treatment. For advanced/incurable lung cancer, the risks of lung cancer coming back likely outweigh the risks of x-ray exposure although you are right to be concerned. If you were treated curatively for Stage 1-3 lung cancer, that scan schedule may be excessive per the NCCN guidelines which I’ve attached below. It is certainly worth a discussion with your doctor about the risks/benefits of every 3 month imaging.
Well. I can’t seem to leave a photo but you can look up the NCCN guidelines for your cancer. The recommendations for surveillance scanning will be included.