Hi all, I wanted to ask for your input on radiation that you’ve had. I’ve always been against doing chemo or radiation for myself, I never ever thought I would. I’ve been on drug therapies since July of 2020 and had some pretty decent success, but my oncologist asked me to meet with a Radiation specialist today just to ask questions. They’ve been advocating for me to have it for a long time, and my oncologist felt it would be helpful to do it proactively on the spine lesions (that have been shrinking).
As far as I knew, everything on my last Petscan was stable, outside of those smaller lesions and the mass in my breast that had grown 1cm.
I went into the appointment because I agreed to a consult, but had no intentions of getting radiation (like, ever). The doctor showed me my petscans and informed me that I had activity in the back of my upper neck as well as the back of my hip too. He highly advocated me getting multiple doses of radiation (3-5 doses for one, 10 for the other) in small consecutive amounts ASAP.
I was in shock and horrified; I had no idea because this hadn’t come up on my last PET. I was trying to process it, while he’s telling me I should do it soon. He said I’m fortunate in that I’m young, otherwise healthy (outside of cancer!) and that it’s mostly contained. He said that it’l likely that they could get it all and eventually I may show no evidence of disease.
I later spoke to my oncologist, who said he would never give me anything that would hurt me. Both he and the radiation doc said the side effects would be short term and not severe. My oncologist said likely the most would be fatigue.
Everything I’ve ever known about radiation has been how it destroys good healthy cells too. I’ve seen good friends die after chemo and radiation, although none had MBC. They disagreed that it is harmful, especially when so many women with MBC get radiation with great success and longevity.
I’m aware that times have changed and so have treatments; many are less invasive. But I’m so terrified that this will hurt me long term. I figured why not go right to the source and ask you guys?
Any input you can offer would be helpful. Is this safe? Would I be ok after this? I haven’t told my doctor yet but I’m just planning on doing it. He also said that if I get enough positive petscans later, we can talk about coming off the meds at some point (which is my ultimate goal).
Thanks
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Hi Verbena1, Not wanting to sound dismissive at all, but I've had heaps of radiation and I found it easy compared to chemo. I had 5 or 6 weeks worth across my left breast/armpit area after initial mastectomy surgery, and I've just had another 3 weeks worth on two sites of bone mets. One type was SABR (high dose) and the other was a medium dose I think. When you're actually getting it done its sort of like an xray, a big machine whizzes around you but you don't see or feel anything. I had moderate burns across my left breast area (sort of like nasty sunburn) but it resolved with cream in a few weeks, and the most recent sessions I had no side effects at all. They told me to expect fatigue but I didn't get any. Good luck I hope it goes well not matter what you decideRegards
Hi Danny, not dismissive at all, I appreciate the info! I might have antiquated notions of radiation based on a long time ago…I’m glad to know the side effects for you weren’t severe, it helps a lot. Thanks~
Well first, radiation does not hurt but you might want to carry pieces of aloe plant with you so to minimize any burn--I never had a problem with that. Second, yes, it does not so great things to your body but no worse than chemo. Radiation is also a down the line issue. How old are you? Where do you live and are being treated. I am in the D.C. area.
I would’ve never thought of aloe, I will definitely do that. I’m in NY and being treated here…and just turned 50. They said it doesn’t have long term effects, but what does it it / did it do to your body? Thanks
That is crap! there is NO way they can legitimately say that radiation does not cause long term effects on our bodies. Seriously, why would they say that when all science says just the opposite. Now with that said, you still need it and you should do great with it from all that I understand from those MBC ladies here. I did have breast radiation in 1999. At the time my RO told me that there was a possibility that I would develop lung cancer in over 10 years but it was still to my benefit to get radiation and I did and am happy that I did. I was 48 when diagnosed and I think it made it a bit easier for me as my three youngest were 2, 5 and 8 and I was just so busy and had to live for them. Now?? I am confused about why the bone mets need radiation. Are you having a great deal of pain? I have numerous bone lesions but has not even been a conversation as yet. And where in NY are you being treated?
Good to know…yeah I wondered that myself. How can anyone say there aren’t long term effects? It’s nice to hear but hard to believe. I was told I may have trouble swallowing for a bit. That concerns me because I looked it up and some people have many probs with their throat muscles after and longer term effects. I don’t have any pain where I’m getting treated but there’s apparently a lot of activity so they’re concerned. My treatments are via NY Cancer who have been excellent.
I would not worry too much about it and doubt that you will experience anything so horrible. What are your risks if you do not have it---so you need to weigh that and normally in our situation, the risk is much greater. Sooo! I strongly believe knowledge is power and you must be as informed as possible. We are hear to support each other but that is not being a cheerleader without info and realism. The most frightening thing is always not knowing. I do not believe denial is the way to go although it does work well for some.
I just finished 10 days of radiation to my C4 vertebra, but I had severe neck and shoulder pain for a long time. The pain went away after about 3 treatments. On the 7th day, I stated having a lump in my throat and then severe throat pain for about 2 weeks, which made it very difficult to swallow. All that has pretty much resolved for now, but I still am aware of my throat and seem to have lost some taste. All in all, despite the discomfort, I am glad I had it done. I also have a lesion in my hip and am wondering if they will do radiation for it.
No one said radiation can't cause some peripheral damage. And certainly any treatment will have an effect on your body! However, as stated, usually very little side effects or damage.We are just trying to alleviate her fears of the treatment itself and the side effects are usually minimal.
And, the aloe broken off I put in a plastic bag and took with me to radiation daily. You need to beak that open and spread throughout the area radiated as SOON as you get into your dressing room--not when you get home. Then you can also use later, etc. But MooCream is excellent afterwards at home or in morning if you no longer want the greasiness of the aloe later on.
And yes, so many times in this journey we are making decisions to do and take things we NEVER imagined in our previous life we would do under any circumstances--but here we are working our hardest to stay alive. I learned a long time ago to never say never.
Please don't worry about radiation. I was worried also but every thing was fine. Radiation today is very much sophisticated compared to eariler times.
It is very simple and the worst thing that can happen is your skin at the radiation site might get a little red or irritated and the Aloe will take care of that. Or the nurse will suggest some creams. You are getting short treatments so nothing very invasive. I had 10 rounds to my left hip in 2013. It is still stable. I also had radiation to my left breast. That didn't stop the tumour there which broke through the skin. Had the breast removed. That area is stable also. Hope this helps.
I had three ultra targeted radiation treatments to my left hip with a goal to arrest 2 bone mets and stabilize them. Done in April 2019 at Sloan. No bone mets since then and that area all quiet. I literally went from my then office on 54th up to 69th and back in about an hour or hour and a half those days. Got flash pain day two...ask about that. No fatigue. No redness. Had breast rads for 25 treatments in 2013...those burn that aloe helped.
I can understand your fear - in my case I was more terrified of chemo but it worked out OK. The radiation is planned and administered very carefully with these big X-ray-like machines. Depending on the intensity & duration, the effects can be entirely unnoticeable or can look like a bad sunburn (usually no pain though, but the skin can feel a bit hot). There can be some mild skin effects but that recovers with time.It actually sounds very positive that they think they can treat some areas and achieve such progress that you might be able to go off the meds. That’s a great scenario!
One idea — Since you’re in NYC which has such great cancer hospitals (including MSK where I was treated 6 yrs ago), maybe you could get a second opinion?
I, too, was scared about having radiation, but the treatments were much better than I thought they would be. I had 10 total sessions of SBRT (stereotactic body radiation therapy) which is targeted high dose radiation, 5 sessions for each of two lesions that were found. The treatments lasted only about 15 minutes and did not hurt. They did not leave me with any burns on my skin and I went to play golf after most of them. They first did a CT scan to determine the best entry point so as not to damage any organs. The radiation oncologist met with a physicist who helped plan this out. It took about a week after they did this to come up with the best plan. When I went for the treatments, the staff was very nice and made sure I was comfortable. The machine goes around you and sends beams to the site to be radiated. I did not feel anything. Before I knew it the treatments were done. Although they told me I might have fatigue and possibly diarrhea afterward due to the areas being treated, I did not have either of those. I have an amazing radiation oncologist who explained everything to me before I had the treatments. I trusted her and her staff which was so important. I hope you have some good conversation with your radiation oncologist and get all of your questions answered before you agree to do this. Best of luck to you. Sending hugs.
This is great, and sounds like what they said will happen with me (the planning and mapping it out, etc). Happy to hear that there weren’t issues after for you. Thanks!
After my first tumour 27 years ago I had 6 months chemo and three months radiotherapy running concurrently. I survived and had all those healthy years to follow. I think the body regenerates very well, and with diet, rest and exercise you can recover. I wish you good luck! Carolyn x
Well let's say that when MBC kicked in last year, at 71, I thought ' fair cop' , I've been lucky. So I've just tried to live each day to the full with a few new experiences, hoping for a few more good years! I've had a few blips with low neutrophils and infections but generally am ok on ibrance and letrozole. LoveCarolynx
Ask the radiation doc wh as t the purpose of treatment is and how sure he is about achieving it. The answer to listen for or to ask outright is: is this curative or palliative. It a long sounds like he thinks you won't have more bone mets in the future (sadly this seems unlikely).
My own history: lumpectomy and radiation - pretty much the only side effect was an experience of fatigue l never had before. It wasn't bad in any other way and l continued to work.
My regret is l wish l had a mastectomy and maybe the Mets wouldn't have happened? When the Mets finally happened l had severe bone mets entire spine, ribs, sternum. Hips, femur, and elsewhere. I had palliative radiation and am glad l did because the pain was too much the radiation did improve my quality of life. If you get radiation to the lower spine ask about the dosing ask about GI side effects - mine is some constipation and a little change in voiding - l can live with it but wouldn't want it to be worse th a n it is now.
I wish you the best. Don't hesitate to get a second opinion and don't make a decision because they are pusy and urgent.
The urgency would be spinal cord compression they said nothing about that.
Thank you for your input, you’ve given me some things to consider. My treatments thus far have been targeted therapies only, no chemo surgery or radiation. Initially Herceptin, anastrozole, Xgeva and Eligard. When those therapies stopped working I switched up the Herceptin and Anastrozole and moved to Kadcyla Faslodex and now Ibrance.
If you’re worried about the tolerability of radiation, I found it really easy. I had 6 weeks of radiation when I was initially diagnosed in 2012. No side effects but afterwards I did develop a rash on that area. No itchiness or pain but aesthetically not great and I stopped wearing low cut shirts. For me, my goal is to stay healthy as long as possible and I’ll worry about the long term when I get there.
yes that’s my main fear is what will it do to me that could be irreversible? They said it won’t but having trouble swallowing which didn’t sound great! im glad you had it easy for the most part, that’s encouraging~
Hi. I hope you're feeling better about radiation. I've had it three times and each time have had great reduction in pain and it's helped me reach NEAD. The actual radiation might be the easiest thing we deal with. The machine is quiet, it moves over and around you for just a minute or two and you're out of there. Be very sure to use a really good cream (your nurse can help with that, I used Resta which you can find on Amazon) after the session and keep applying it until you go to bed. I didn't get fatigue at all the first two times, but the third was different (stronger) and by the time I got to the last of 15 sessions I had to go home and nap. Other than that, I was fully functional. Good luck!
Radiation may caused a general body side effects like fatigue, local skin and other, sometimes with the late onset. I think it’s important to differentiate by where the radiation is done. So obviously hip radiation is very different from spine.
In my case, I had T4-T6 irradiated (5 sessions) in July 2020. No local effects. Significant fatigue that went away relatively soon. Subsequent Spine MRI didn’t show any difference. 3 months later I developed significant radiation pneumonitis. Stayed on the 2nd floor as I was too short of breath to walk the stairs. Fortunately, I recovered, but there are still radiation related changes in my lungs.
And now I’m dealing with that sudden debilitating neuropathy in my legs. It was partially caused by cord compression (addressed by the spinal surgery) and , by large due to radiation-related spinal cord edema. At this moment I’m in acute inpatient rehab learning to walk.
So not all radiations are created equal.
Wishing you all the best in finding the treatment that address your needs the best and may it be effective and safe!
I’m sorry you’ve had to deal with that, that’s a lot to handle, especially when you weren’t expecting it. I’m glad to know that you’ve recovered but it sounds like you’re still having some stuff to contend with. Thanks for weighing in~
You're spot on to point out that not all radiation is equal. Location can make a huge difference. So sorry for what you're going through now. I hope as you learn to walk again, and with time that your symptoms will lessen.
I had 8 weeks of daily radiation to my chest wall 10 years ago when I first had breast cancer,, and only concern I had was the 2 hour round trip to the cancer center for 15 minutes of radiation🤣 never had an issue, except last week. They had given me some special creme to use and I thought I dont need that. Wrong. Should have been using it all along. So 7 weeks daily with no effects of any kind, and last week it slightly burned..should have used the creme.
I underwent a mastectomy in 2018 then a few months later had 15 sessions of radiotherapy, my appointments were all in the morning and I suffered no pain whilst the radiotherapy light beams shone on the affected area. Even though a lot of time was spent on preparation making measurement, the treatment itself was very quick and lasted about only 15 minutes, a flat mat-type object was placed on the affected area. I later noticed that I had, what looked like sunburn so I kept the area well moisturised. Eventually the area was no longer red but appeared quite dark and with time, this darkened area faded and has now blended in with my skin-tone. There is just a very slight straight line that can be seen from the flat mat object that was used. Therefore, I think you will be absolutely fine and your stressing about the great unknown, but take it from one who has been there, done that and got the t shirt. When the time comes and you have already had the treatment you will be thinking, what was all that fuss about in the first place.
I remember after my first session I was extremely tired and had to go and lie down as soon as possible but after a couple of hours rest I was as bright as a button, not feeling like I had stayed up the night before watching a late night movie. It was probably a couple of times I had experienced fatigue and that was it. All my other sessions went like a dream with no side effects to write home about. My oncologist showed me some arm exercises previously to do after each session, as I had to hold my arms above my head during the treatment but all in all, it was a doddle. I do hope this has helped a little in some way, good luck and blessing to you.
This was so great to read, thank you! I’m hoping my experience will turn out like yours was, and that I look back wondering what I was making such a big deal of!
I had 6 weeks of daily radiation back in 2014 during my first dx.My side effects were fatigue and I had to use Aveeno cream on my chest, but went into remission for 4 years. Well worth it! So easy and quick. Just a couple of minutes in the machine.
Hi Verbena, I've had rads to my chest wall and all was ok (mostly just fatigue) but I have worked with many cancer survivors of different types of cancer and, as a couple of ladies have stated already, much depends on the location of the rads. Rads to the hip will probably be ok, much like mine, but rads to the neck could be very different. My experience, as heard from these survivors, seems to show that rads to the neck and head will often result in more issues. (I like to be upfront with sharing my knowledge so I apologize if this is not what you want to hear). If they say likely to have trouble swallowing then I would expect that to be the case. (I believe it usually heals but it can take quite a long time, as in months). And the neck skin may be more sensitive to burns too. So this all brings up many questions I have. WHY are they suggesting this? To me there are only 2 reasons to go for this so I would seriously seek a 2nd opinion. Either you are in a lot of pain (which you don't mention), or your lesions are getting to the point of risk of fracture. I looked at your profile and saw this has happened to you already. Obviously a fracture in your cervical spine could have dire consequences for use of your limbs so that would be a good reason to have the rads, if that is the case.
To be honest, I am confused by your situation and what the docs have told you. You say your breast lump has grown but they are only radiating your bones? So with that (and all of us) is getting to the point of no meds even realistic? I've had docs tell me its best to save the rads for when they are really needed as you can only have a total of so much, and that's why I would seek a 2nd opinion now. I just feel like all the facts don't seem to quite add up right.
If they say risk is imminent perhaps you could ask to look at the images with the doc so you can see for yourself how widespread/dangerous-to-nerves the cancer is in these locations. Start by writing down some questions for yourself, and ask, ask, ask. And please keep us posted and what you learn/decide to do
Hi thanks for your thoughts…initially I was told by my oncologist that the petscan looked stable, however we could hold off on radiation for now. Still, he has been wanting me to have it since 2020 when I first went into the hospital for the spinal fracture. He felt being proactive now would stop worse problems occurring later, as it was still contained pretty well and no spread to organs.
I had shown 1 cm growth in the breast but no mention of hip or neck. When the radiologist sat with me, he showed me the petscan and said there was lots of activity in both the neck and hip. I assumed he was able to see it better being that he has been doing this for 30 years. I hadn’t yet seen any petscans thus far, just the reports in writing with my oncologist so I’m not sure they are as well versed with dealing with reading the pet as well.
I’ll ask again about it, because the neck one is very concerning for me. Although they have said it’s low dose and 3-5 doses at 15 min each on the neck, I don’t want any resulting issues.
I'd still seek a second opinion, if it were me. Zapping a bone lesion isn't going to cure because metastatic cancer is already systemic, it's only to try to halt progression in that area. So perhaps the radiologist can see that the lesions in your neck are a risk to your nerves? You haven't said if you have any pain at all? At the very least it would be great if you could take someone with you to talk to your radiologist, perhaps someone who is good at asking questions, or even better if they have had some experience with similar treatment to know what to ask so you can get a better understanding. Wishing you the best with it all!
no one told me this would be curative, however I think their take on it is they feel it’s contained enough and they can halt any more progression in those two areas. The radiologist felt that it was much more likely to be able to see no further evidence of disease if this is done early, rather than have them continue to get worse and then we have a bigger problem.
My oncologist for the first time said that if my petscans continue to improve consecutively in the future then we can talk about how to get off the meds altogether, as that is my goal.
I have to admit, I don’t have any other ideas for what they’re supposed to do with these two areas. Had I not waited so long when my initial tumor had broken the skin, grew (and eventually collapsed my vertebrae), I would not be open to this at all. I just can’t afford any more risk of fracture, it’s absolutely one of the scariest things that’s ever happened to me. I almost lost my life, lost 3 inches of height and I also now have a curvature in my upper body that I don’t know if I’ll ever get rid of.
The radiologist and the oncologist both want to remove the breast down the line, which I am against. I don’t have pain in those 2 areas they want to radiate outside of what I think is from my spinal fusion surgery last year. They have wanted to do the radiation over a year ago but I said no.
I’ll continue on the targeted drug therapy in the meantime. But I had asked for more time to think about it and was told it’s already been almost a year and a half, and they do have a knack for giving you the worst case scenario for the potential outcome of you waiting!
Hello VerbenaI had 10 sessions of radiation on my T4 vertebrae last February. They said it was a palliative treatment because I was having pain and we couldn’t know for sure if the lesion would disappear.
After the treatment was done I had esophagitis. For 2 weeks it was really painful, I could barely eat or drink. After 12 days it got better but I lost weight and it was really debilitating . Also I experienced fatigue but in March I had agressive progression on my liver so not sure the fatigue was just from the radiation. Maybe a month after receiving the treatment my back pain was gone. Last July I had a scan and lesion was still there. Last Thursday I had a bone scan and the lesion is gone! So I am glad I did it but it is true that you could eventually suffer from side effects.
I can relate to your fears regarding radiation - there were plenty of people in my "friend" group (not really friends after how they acted after I was diagnosed) who said That THEY would NEVER take treatment. They said this despite not even knowing what kind of Cancer I had, never looking at any of my charts. They were just the organic food, yoga and goop types who felt better than me because they had never been diagnosed. Like you, I went to see an oncologist, and then I spoke to the radiation team. I also canvassed around to speak to people with prior experience.
Here is what I learned: Radiation has come a far, far way since the 1970s. It is much more precise. So unless your team says differently, I wouldn't expect to loose much healthy tissue.
Ask them what are the chances you'd develop further problems if you decline this treatment. For me the chances were very high that I would not have further Cancer if I did the treatment - so eventually I opted to do it.
Another thing, a friend of mine told me her stepmother had it back in the 1970s when radiation therapy was in its infancy. Stepmom ended up getting what looked like a bad sunburn all over her body. She also lived to be 95. That made me feel better about trying it.
Another thing I learned is that the average consumer doesn't seem to know the difference between chemo and radiation. Chemo can make people feel nauseated, and lose their hair. Radiation didn't have those kind of side effects for me. It was depressing, but that might have just been the Cancer itself. And I did experience some fatigue. But it wasn't terrible. I mean I was able to drive myself to the appointments and back. It was do-able,
My radiologist suggested putting aquaphor salve on my effected skin after each session. I sort of have scars but it's not any more unsightly than than the surgery scars and it soothed my skin. One unexpected result is I no longer have underarm hair on that side, lol - I guess I'm ok with that.
I hope you are well no matter what you decide. I am sorry you have to go through this
That was really well said, and I agree…no one can say what they would do unless they walk a mile in our shoes. And even me with stage 4 cancer said I’d never do radiation, but I’ve changed my mind because I do trust my oncologist when he says he would never do anything to me that will hurt me. I still don’t think I’d do chemo but that’s just me. Many of my friends have had it. How did your treatments ultimately go, are you happy that you made the choice to do the radiation?
In 2 more years i’ll be five years out since diagnosis and so far no further developing Cancer leading me to say cautiously radiation therapy was successful. I do not regret doing it.
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Who else was shocked!!
MBC Lesions in my spine
BEFORE MD NO TO MASTECTOMY NOW RECOMMENDING
Mammogram?
