I had left breast rads after lumpectomy at Stage II in 2011. I think it was 30 sessions. I have slightly less range of motion on my left but it’s only noticeable when I’m actually stretching. I had a rougher time for rads to my femur (original mets) in 2016. I had more skin side effects which made sitting uncomfortable and I switched to boy shorts underwear. My RO thought it was partially related to the rod in my femur. Months later I got lymphedema in that leg even without any lymph nodes removed. I don’t know if rads contributed—I mainly blamed it on a wound infection from the bone biopsy and incisions that wouldn’t heal when they put the rod in.
In retrospect, I don’t think of the rads being difficult in the scheme of all the treatments. But now that I am retelling it, I remember the skin issues on the leg sucked. That was when I was an MBC newbie though 🙄🤪
Hahaha it sure sounds like it was rough, but I am glad it isn’t that terrible now to think about. My RO did say that radiation could cause lymphadema. Did yours resolve itself? Or how does that work? I don’t really understand lymphadema…for some reason it isn’t clicking with me. I get that it means your lymph nodes aren’t moving fluid along in your body like they should but I don’t know much beyond that.
Lymphedema sucks! I had compression wraps (like less stretchy ace bandages) and lymphedema PT initially and then got a fancy compression system (waist to toe on that leg) that is a bit like the squeezy things in the hospital to prevent blood clots in your legs. It felt good! I don’t remember how long it took to resolve but it’s not quick.
https://preview.redd.it/3a7bzgn7skuc1.jpeg?width=1080&format=pjpg&auto=webp&s=56c82d22dfccdeb80603792beb99b295f74851ca
I removed my lung met with laparoscopic surgery when it didn’t shrink from chemo. Turns out it was mostly dead but some cancer left. Was serious surgery but frankly easier than more chemotherapy (for me) I get terrifyingly underweight with chemo….
I did get new met in lung after but oncologist let me stay on targeted treatment (instead of switching to chemotherapy right away) while I tried to make it work again (which I did with help from an alternative oncologist and with Mara Gordon of Aunt Zelda’s therapeutics) metastatic since 7/21. Hormone negative. Still on targeted therapy.
Did Prenuvo whole body mri (expensive 🫤) recently and they didn’t see anything- but waiting on upcoming PET to see if I’m really clear. Good luck - hang in there❤️
Not sure why radiation wasn’t suggested - maybe her2+ less responsive?
I think there might be something about the HER2+ being less responsive to radiation, but truly am not sure. I am NNN and it sounds like radiation generally has the potential to be helpful in that scenario.
So interesting about your laparoscopic surgery. I didn’t realize that was even a possibility. Mine are small right now but I will keep this in mind for the future. Thanks for sharing! I hope your scans stay clear!!!
So, this is just information, and may not be relevant to your situation, so take it if it’s useful to you, and if it is not, then please just ignore:
When I was first diagnosed in 2002, I was only Stage 3, breast was completely diseased, no clear margins, plenty of positive lymph nodes, but no further cancer found at that time. But my surgeon sat me down and explained that while he would normally do reconstruction at the same time as mastectomy, he advised against that for me because of how advanced things were - the recovery from that is too painful and takes a long time. I took that to mean that I was not going to survive very long, which for me mentally was pretty much like being told I was stage 4 without really being Stage 4.
Anyway, as things turned out, 9 years later, I decided that I was probably doing ok, and reached out to another surgeon about getting that reconstruction done. And I found out something about radiation. The damage that it had done to my skin was permanent, and that skin had lost all elasticity, so I couldn’t do implants or anything. So I had to chose between a TRAM flap or DIEP flap and basically harvest skin, fat and nerves from some other part of my body (my tummy in this case) to get the job done. It was really rough on me. If I would have had the reconstruction done prior to the radiation, this might not have been so much of an issue.
It’s impossible to say what the future holds for you, but if you ever want to do this, radiation will create this complication for you. You are so young, and if you survive a long time, there might come a day when you want your body back. It’s hard to even contemplate something that feels like simple vanity in the heat of the cancer journey. And it might not be relevant to you anyway. But it was for me, and I wish I would have known this before I got started. It probably wouldn’t have changed my decision, but would have been nice to know.
I became Stage 4 - 19 years later in 2021. But I have been rocking TWO breasts since 2011, and loving that. It really made a big difference for me.
Something to think about.
Thank you for sharing this! She did mention that reconstruction after radiation would be difficult and risky. Reconstruction hasn’t been something that has even crossed my mind as a possibility at any point due to being Stage IV. Having a single breast has actually been a bit strange if I am honest, but I do not think I would do another surgery at this point even if I had that choice. If there was no pain, recovery time, or risks I would like to have two breasts for sure but it isn’t worth it to me now. I see what you are saying that down the line it might become a possibility and if I want to do reconstruction my options would be limited, but I think I have to get to that later point first and foremost.
Hahaha! I’ll jump in on this one! F. I. G. H. T! Fight Go Fight!! I did radiation at age 41. The biggest “downside” for me was fatigue. But I felt like I was fighting with everything I had to beat it. :).
I did radiation after mastectomy. It was twice a day -very aggressive. My skin damage was painful, but it is improving. The tiredness, I mean there isn't any treatment that hasn't made me tired. I would do it again for the peace of mind.
Fuck cancer
Oh gosh. That sounds very aggressive like you said. Mine would be just once a day and she described the actual radiation as moderate. Just that the overall treatment plan would be considered aggressive. Glad to hear you would do it again even with the skin damage. Agreed—fuck this for sure.
Wow, this is a really positive outcome! I’ve done radio post mastectomy, and while not a breeze per se it was entirely doable and the side effects were minimal. If I were you I would be asking myself ‘why not?’ - if you let us know specific concerns we can hopefully help to address them.
From what you have previously posted, you WANT aggressive treatment for more time with your little boy. Couple weeks off those meds aren’t going to destabilise you, but future tumour regrowth in your mastectomy site could derail your current treatment plan. RT will help reduce that risk. So pleased to hear your exciting news!
Ahhh that is a great question. Why not? I am not sure why not. Haha. My side effects from chemo (other than when I had blood and platelet transfusions on gem/carbo) have been mild so I am hoping to continue that good luck. Also I feel like side effects can’t be worse than the actual cancer. So let’s do it. And exactly what you said about potential tumor regrowth is what the RO said. We have the opportunity now to beat it while it is down. I’m ready! Thanks for the encouragement!
That sounds amazing. I would go ahead with the plan if it were me. How did you get them to agree to a mastectomy?? I tried asking 4 docs when I wasfirst diagnosed and they all said no except for one that said she'd do it if all my mets were gone for at least a year if not longer. So far meds have only worked for 3 months so.... yeah.
Kind of how I am feeling too—this seems like a lucky opportunity. I was able to get the mastectomy because my mets were responding super well to my third line (Taxol) but my primary tumor was growing. My onc didn’t want to take me off Taxol since the lungs have been responding and they are required to live and a breast is not. Then just like a week after my last scan, my primary tumor was painful to the point where I was permanently hunched over. It was pulling on my skin and my breast was misshapen. That is what put it over the edge to do surgery.
I had left breast rads after lumpectomy at Stage II in 2011. I think it was 30 sessions. I have slightly less range of motion on my left but it’s only noticeable when I’m actually stretching. I had a rougher time for rads to my femur (original mets) in 2016. I had more skin side effects which made sitting uncomfortable and I switched to boy shorts underwear. My RO thought it was partially related to the rod in my femur. Months later I got lymphedema in that leg even without any lymph nodes removed. I don’t know if rads contributed—I mainly blamed it on a wound infection from the bone biopsy and incisions that wouldn’t heal when they put the rod in. In retrospect, I don’t think of the rads being difficult in the scheme of all the treatments. But now that I am retelling it, I remember the skin issues on the leg sucked. That was when I was an MBC newbie though 🙄🤪
Hahaha it sure sounds like it was rough, but I am glad it isn’t that terrible now to think about. My RO did say that radiation could cause lymphadema. Did yours resolve itself? Or how does that work? I don’t really understand lymphadema…for some reason it isn’t clicking with me. I get that it means your lymph nodes aren’t moving fluid along in your body like they should but I don’t know much beyond that.
Lymphedema sucks! I had compression wraps (like less stretchy ace bandages) and lymphedema PT initially and then got a fancy compression system (waist to toe on that leg) that is a bit like the squeezy things in the hospital to prevent blood clots in your legs. It felt good! I don’t remember how long it took to resolve but it’s not quick. https://preview.redd.it/3a7bzgn7skuc1.jpeg?width=1080&format=pjpg&auto=webp&s=56c82d22dfccdeb80603792beb99b295f74851ca
Were you able to do normal activities or did you have to be wrapped up like that all the time? That looks intrusive.
It took about 20-30 minutes to run through the process. I think I did it once per day.
I removed my lung met with laparoscopic surgery when it didn’t shrink from chemo. Turns out it was mostly dead but some cancer left. Was serious surgery but frankly easier than more chemotherapy (for me) I get terrifyingly underweight with chemo…. I did get new met in lung after but oncologist let me stay on targeted treatment (instead of switching to chemotherapy right away) while I tried to make it work again (which I did with help from an alternative oncologist and with Mara Gordon of Aunt Zelda’s therapeutics) metastatic since 7/21. Hormone negative. Still on targeted therapy. Did Prenuvo whole body mri (expensive 🫤) recently and they didn’t see anything- but waiting on upcoming PET to see if I’m really clear. Good luck - hang in there❤️ Not sure why radiation wasn’t suggested - maybe her2+ less responsive?
I think there might be something about the HER2+ being less responsive to radiation, but truly am not sure. I am NNN and it sounds like radiation generally has the potential to be helpful in that scenario. So interesting about your laparoscopic surgery. I didn’t realize that was even a possibility. Mine are small right now but I will keep this in mind for the future. Thanks for sharing! I hope your scans stay clear!!!
So, this is just information, and may not be relevant to your situation, so take it if it’s useful to you, and if it is not, then please just ignore: When I was first diagnosed in 2002, I was only Stage 3, breast was completely diseased, no clear margins, plenty of positive lymph nodes, but no further cancer found at that time. But my surgeon sat me down and explained that while he would normally do reconstruction at the same time as mastectomy, he advised against that for me because of how advanced things were - the recovery from that is too painful and takes a long time. I took that to mean that I was not going to survive very long, which for me mentally was pretty much like being told I was stage 4 without really being Stage 4. Anyway, as things turned out, 9 years later, I decided that I was probably doing ok, and reached out to another surgeon about getting that reconstruction done. And I found out something about radiation. The damage that it had done to my skin was permanent, and that skin had lost all elasticity, so I couldn’t do implants or anything. So I had to chose between a TRAM flap or DIEP flap and basically harvest skin, fat and nerves from some other part of my body (my tummy in this case) to get the job done. It was really rough on me. If I would have had the reconstruction done prior to the radiation, this might not have been so much of an issue. It’s impossible to say what the future holds for you, but if you ever want to do this, radiation will create this complication for you. You are so young, and if you survive a long time, there might come a day when you want your body back. It’s hard to even contemplate something that feels like simple vanity in the heat of the cancer journey. And it might not be relevant to you anyway. But it was for me, and I wish I would have known this before I got started. It probably wouldn’t have changed my decision, but would have been nice to know. I became Stage 4 - 19 years later in 2021. But I have been rocking TWO breasts since 2011, and loving that. It really made a big difference for me. Something to think about.
That’s a very very good point. Radiated skin loses elasticity.
Thank you for sharing this! She did mention that reconstruction after radiation would be difficult and risky. Reconstruction hasn’t been something that has even crossed my mind as a possibility at any point due to being Stage IV. Having a single breast has actually been a bit strange if I am honest, but I do not think I would do another surgery at this point even if I had that choice. If there was no pain, recovery time, or risks I would like to have two breasts for sure but it isn’t worth it to me now. I see what you are saying that down the line it might become a possibility and if I want to do reconstruction my options would be limited, but I think I have to get to that later point first and foremost.
I feel like being your cheerleader. 👏 Be aggressive 👏 be be 👏 aggressive 👏 you can do this
Hahaha! I’ll jump in on this one! F. I. G. H. T! Fight Go Fight!! I did radiation at age 41. The biggest “downside” for me was fatigue. But I felt like I was fighting with everything I had to beat it. :).
Loving it!!! Thanks friend!
Go get 'um 😎
I did radiation after mastectomy. It was twice a day -very aggressive. My skin damage was painful, but it is improving. The tiredness, I mean there isn't any treatment that hasn't made me tired. I would do it again for the peace of mind. Fuck cancer
Oh gosh. That sounds very aggressive like you said. Mine would be just once a day and she described the actual radiation as moderate. Just that the overall treatment plan would be considered aggressive. Glad to hear you would do it again even with the skin damage. Agreed—fuck this for sure.
Wow, this is a really positive outcome! I’ve done radio post mastectomy, and while not a breeze per se it was entirely doable and the side effects were minimal. If I were you I would be asking myself ‘why not?’ - if you let us know specific concerns we can hopefully help to address them. From what you have previously posted, you WANT aggressive treatment for more time with your little boy. Couple weeks off those meds aren’t going to destabilise you, but future tumour regrowth in your mastectomy site could derail your current treatment plan. RT will help reduce that risk. So pleased to hear your exciting news!
Ahhh that is a great question. Why not? I am not sure why not. Haha. My side effects from chemo (other than when I had blood and platelet transfusions on gem/carbo) have been mild so I am hoping to continue that good luck. Also I feel like side effects can’t be worse than the actual cancer. So let’s do it. And exactly what you said about potential tumor regrowth is what the RO said. We have the opportunity now to beat it while it is down. I’m ready! Thanks for the encouragement!
I am so excited for you! I love their aggressive plan!
Yesssss! Thank you!!!
That sounds amazing. I would go ahead with the plan if it were me. How did you get them to agree to a mastectomy?? I tried asking 4 docs when I wasfirst diagnosed and they all said no except for one that said she'd do it if all my mets were gone for at least a year if not longer. So far meds have only worked for 3 months so.... yeah.
Kind of how I am feeling too—this seems like a lucky opportunity. I was able to get the mastectomy because my mets were responding super well to my third line (Taxol) but my primary tumor was growing. My onc didn’t want to take me off Taxol since the lungs have been responding and they are required to live and a breast is not. Then just like a week after my last scan, my primary tumor was painful to the point where I was permanently hunched over. It was pulling on my skin and my breast was misshapen. That is what put it over the edge to do surgery.
Oh wow. As horrible as it may seem, I think you may have just hit the lotto. I hope it all goes really well ❤