well the process of mapping starts tomorrow. It will be on two areas of the spine and the breast. I’m pretty nervous. 15 sessions in total. The esophagus will be impacted so that could be an issue. Any good stories you can share that I can hold on to while I’m going through the worst of it?
radiation: well the process of mapping... - SHARE Metastatic ...
radiation
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HbbM
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hi HbbM. perhaps I am showing my ignorance. but I am wondering if the radiation is being done as 'treatment' against the cancer or as 'palliative' to reduce your pain? and if you don't mind me asking another question, how long have you been diagnosed with mbc?
carole💛
Please, ask away. 🙂 it’s palliative for the pain. I was diagnosed mbc last July, 2022.
hi again. thanks for that info....makes a difference in my reply. oh boy, you are asking for encouragement so I debated on answering. I am now 5 1/2 years in and have experienced my own issues and have read much from the amazing women on this site. you caught me at a time when I am questioning a lot.....about the diagnosis, the treatment, the side effects. the pros. the cons. it's really hard to know what the right answer is sometimes.
I also have mets to my spine. very painful and very debilitating...pretty much bed bound as my spine has begun....okay, it's past begun....to collapse. after ablations, injections, multiple PT sessions and a lot of self-advocating.....my only option is to have complex spinal surgery at Mass General in Boston with a top notch surgeon. but the recovery is intense (per the surgeon) and long....a full year. I will be fused from top of T spine to sacrum....lots of screws and rods and metal plates. I will never bend again....I will have the straightest posture ever...lol. almost freakish. this is what I am contemplating and I change my mind every day. at present, my QOL is poor. I cannot cook or clean or do laundry or wash my hair and I am going this alone. and the pain is unbearable at times, a lot of the time, despite the mega doses of pain meds. if I don't do the surgery, I will stop cancer treatment. there is no point in trying to extend my life when I am barely participating in the life I have and suffering with so much pain. so I have a big decision to make. (I am getting back to you soon)
what really upsets me is that so many times, the side effects of treatment are permanent and we are not always sufficiently made aware by our oncologists. they want to kill the cancer...I get it. but don't 'harm' us at the same time....we have other body parts besides the cancer ones. at least that has been my experience. when I had chemo (the red devil...rough stuff) back in 2013 for the Primary Breast cancer...I was told it 'could' damage my heart. they didn't tell me it 'would' damage my heart. and it's true....it will always reduce your EF (heart stroke measurement) and some more than others. and then we are surprised when we show signs of heart failure. just one example. a friend with mbc was kept on Xgeva probably longer than she should and developed ONJ....osteonecrosis of the Jaw. not fun. not pretty. Ibrance can cause interstitial lung disease. my point is not that you should not take Ibrance...it is a wonder drug for some. I just know that interstitial lung disease (side effect of Ibrance) was NEVER mentioned to me by my oncologist. shouldn't it have been mentioned? that is my point....give us the facts. and then we can make an informed decision. I could go on but I won't.
I was originally diagnosed with bone mets to my lower spine and L pelvis. I was in a lot of pain in my lower back and my oncologist offered radiation as palliative to reduce the pain and I said yes. well, she never told me I could only do it once. I had much worse pain several years later but I had already 'used up' my one radiation treatment.
so I could have skipped all of the above and came straight to this. this is what worries me about your planned radiation......this statement that you made from above: The esophagus will be impacted so that could be an issue. you are not even one year post diagnosis. you could potentially live over 10 more years....15?....who knows. but the esophagus is all about swallowing and eating and I would no way compromise a perfectly fine and healthy working organ(esophagus) for palliative relief. they....the oncs will most likely downplay it....but the risk is real. and you potentially have so many more years.
so had you not mentioned the impact on the esophagus, I would be saying go for it. the radiation is doable. I also had my R chest wall radiated as part of my Primary BC treatment. both times I had radiation.....my skin got pink.. more so on my chest wall than my spine. and the other side effect was fatigue. so I'm sure you will get through this fine. but I am really worried about your esophagus. I would recommend discussing the esophageal issues one more time with your team. or maybe you already have.
I'm sorry my reply was probably not what you were looking for. I had my 'nurse' hat on😉
others will step up I am sure.
best wishes...XOXO
carole💛
thank you so much for taking the time to give a detailed response!I really appreciate it. Im definitely weighing my options and am pretty concerned about the esophagus and trading one problem for another. Unfortunately I don’t know that I do have years ahead of me. I have a pretty severe fungating wound. Just found out I have the esr1 mutation so the AI’s may not be an option for me. I don’t know. I feel like damned if I do, damned if I don’t.
omg...that is a lot. I am so sorry to hear of your fungating wound....what a challenge. I assume it is your breast cancer and you were diagnosed de novo. I have never understood why they don't do mastectomies on de novo patients whereas it is protocol in Primary BC. another discussion topic for another day. I'm sure it has come up before. and I am also understanding of your distress on the recent discovery of your esr1 mutation. and your scheduled radiation. that's a lot to handle. but you are a strong woman💪🏼.....I can tell. XOXO
just read your post response again. I’m so sorry you are suffering so much right now. I just hate all the suffering we all experience. I look forward to a time when there will be no more suffering for any of us. I personally believe it’s not too far off (a whole other subject) but I pray whatever you decide that your medical team can help you with the pain. I comfort myself with the fact we at least live in a country that has access to pain meds that can at least help to a degree or at least hasten the end of our suffering.
thank you❤️
Carole. I just wanted to reach out to you because of your response about having spine surgery at Mass General. I had mine done at RI hospital by a top notch neurosurgeon, Dr. Zyra Gokaslan. People travel all over to see him. Hopefully you would be interested in a second opinion. My surgery was March 03 and yes it was painful but between morphine and pt and radiation im doing great. It was my 3rd fusion in my spine over 20 years! My whole personal goal is to do whatever it takes to be pain free. I know everyone is different, but I just had to let you know about my mbc experience. Everyone should be pain free!! Best of luck to you
I share your personal goal! I’m determined not to be a martyr to pain and I take opioids daily. I’m actually taking a lot less drugs than before I started taking opioids as they’re so effective. I’m only on a low dose and we have to jump through hoops to get a script these days but it’s worth it.
hi Jhshl512.
thanks so much for reaching out to me. very happy to hear your success story of your spinal fusions....both past and your most recent surgery. very encouraging! I am at wits end here. can't walk more than 20ft or so...at least I can hobble from my bedroom to the bathroom. although the pain is extreme. I take large doses of opioids and yet my pain is still not controlled. I am very hunched over and my spine deformed. bottom line, my spine is collapsing and it can no longer 'hold me upright'. the surgery I am contemplating would entail fusing almost my entire spine and lots of rods and screws. I would love to be able to stand and walk and have reduced pain. and honestly, I am not expecting to be pain free, but living with a pain level of 4 to 5 would be welcome relief. and to no longer be a recluse would be wonderful.
my sister from out of town is visiting for a few days so I am tied up at present. after she leaves, would you mind if I PM'd you directly? I wanted to ask you some questions and get more info regarding your surgery if you don't mind?
thanks again for reaching out. very kind of you.
best wishes.....XO
carole 💛
we can talk anytime you are ready Carole.
❤️
Sorry, just got a minute to reply. I wanted to let you know I’m almost 65 years old. So when you said to pm me, I’m not sure what to to do. I know it means private message but that’s about all. I hope between the 2 of us we can figure it out. Enjoy your sister!
no worries. I know how to do it. when ready, I will send you a PM and it will show up under the heading 'Chat' in top left corner. click on 'Chat' and the message will be there to view....just like email. btw...I too just turned 65😉. will be in touch after my sister leaves in a couple days. thanks again and have a wonderful day💛
👍
I had extensive back surgery in 2017 when persistent pain and multiple dr visits discovered 2 fractures in my back. I had a decompression laminectomy and T10-L3 fixation. Basically I have a new metal plate and 9 screws in my back. When they removed the lamina, my neurologist said it was the consistency of butter. I wore a back brace for 4 months and had to relearn how to walk (I had radiation shortly after surgery), but the surgery has been a success. I am no longer in pain! I honestly would go through all over again if I knew it would help. Recovery may not be as long as you suspected. Good luck!!!
I had radiation to my right hip and T7 and the radiologist warned me the food tube would be affected. She advised me to avoid acidic foods. While I was having the treatment there were a couple of occasions when I did vomit. I didn’t feel unwell so on the way home we stopped off at MacDonalds. I had a burger with the lot. It tasted delicious going down but it came up almost immediately. So lessons learned? Lesson #1 Don’t overdo it. And the other time mum had seen some strawberries and she loves strawberries so she fixed a punnet for me with yoghurt I think it was. Again it came up faster than it went down. Lesson #2 Stay away from acidic foods. But that’s about it. The radiologist warned me but I should have thought more about what I was eating. That was in 2015. I’ve had no residual ill effects from any of the radiology I’ve had and I don’t regret the treatment.
And more importantly the pathological fracture which was a high risk to my future settled down. The T7 vertebrae is fifty percent compressed but the radiology stopped it from compressing further and the continuing pain I had from both was no longer a problem. Radiology allows good bone to grow back where the bad bone is. Otherwise once the Mets invade to bone there’s no way for the natural bone building to replace it.
If your Mets continue to progress then you will continue to have problems but the point of the drug regimen is that it should stop the progression. That’s how success is measured. If you don’t accept some risks you’ll never get respite.
An elderly friend opted to treat her early bc with tumeric rather than surgery. She was booked for surgery but someone convinced her not to go through with it and she had an alternate treatment from a naturopath who put her legs in stirrups on a machine which shook her like a tree. She had 15 treatments which he said would sort out the cancer. He didn’t charge her but she gave him a donation instead.
After that she ignored her rising pain levels and rather than seeking out her doctor she used Deep Heat once a day on her spine. When she woke up one morning unable to move for the pain she was taken by ambulance to hospital. The oncologist was extremely angry and told her caregiver that it was the worst case of untreated breast cancer she’d ever seen. Her skeleton was riddled with it. The caregiver explained that she’d refused to ever see a doctor about her deteriorating condition and the lady agreed it was all her own fault. Bone Mets are unlikely to kill you but the level of pain relief required, especially if you ignore them, will. And in the case of my friend, it did. She was 90 so it wasn’t a short life but there were several painful years she didn’t need to go through, not for as long as she did anyway.
I can honestly say I’d do the radiation again if I was offered it. The impact on the oesophagus is minimal and transitory. The radiology nurse will give you advice on what to expect, what to eat etc. I definitely recommend taking note of the eating suggestions!
The relief from persistent pain was well worth it. And the radiation to the torso isn’t so bad. It’s easier than a CT or MRI scan because rather than being surrounded by the machine, you’re lying on an open bed.
Stay strong! Honestly it won’t be as bad as it is in your imagination.
All the best
Kerry
Thank you so much for your response! It’s good to look at all sides of something. How long did it take for your esophagus to heal before you didn’t have to worry about the food you eat?
I can’t recall exactly but it was days not months. I avoided acidic foods for awhile but even that wasn’t for long. It’s one of those things that I re-introduced things like pickled vegetables last but they’re very acidic so that’s obvious. I’d say it would take a bit of trial and error but I think you’ll find it is behind you pretty quickly.
For reassurance though I offer this - I’m not taking any digestive aids to prevent reflux or heartburn or anything else so I’d say that 8 years later the affect on my oesophagus is non existent. Of course everyone is different which is the very reason you’re seeking the experience of others.
You’re both right. It is important to consider all the possible consequences and risks of treatment and talking to others who have experienced the same treatment is a good place to start.
There are risks and the possibility of adverse affects on us even if no one else reports a problem. I had a lot more trouble with Afinitor than I’ve ever had with any other treatment and I always share my experience because it was unusual but it was a rare side effect that caused me a problem whereas the common side effect that everyone worried about because it affects 60% of users didn’t affect me.
Asking questions of the medical team is part of forming informed consent. Questions about the proposed treatment are expected and hopefully the answers put your mind at rest.
All the best
Kerry
hi Kerryd22.
good reply....detailed and thoughtful and I am happy you wrote it. I was feeling bad about not being so encouraging.
we all have different experiences. but I never said I was against radiation and I also said my side effects were minimal. I was worried about her esophagus only. and I didn't mean now...I meant down the road....as in a long term side effect. I am not anti-treatment. I knew my post would be misinterpreted somewhat.
best wishes,
carole💛
Carole, it didn’t sound to me like Kerry misinterpreted your reply, at least to me it didn’t. It just seemed like she was giving another perspective. I appreciate both of your perspectives so much. This is the most helpful forum I’ve found so far. Actually both of your comments made me think of more questions for the radiologist. So helpful!
so good to hear you found both replies helpful. btw...just want to clarify....when I mention that I am worried about the esophagus, I am not worried about acid reflux now or ever. that is an annoyance and can be treated. what I am talking about is losing the ability to swallow. I wasn't specific enough in my reply. perhaps good question for your radiologist....as in does it ever happen? your question list is growing😉.
and I totally agree....this forum is the best. XOXO
Carole, you reported your experience and I reported mine. You’ve clearly had a lot more problems than me but that’s the nature of this disease. Everyone is having their own issues whilst trying to live out their best life.
I agree with you about informed consent. There’s a hearing going on here between the medical licensing board and a very famous brain surgeon who is answering two serious complaints lodged by the husbands of two patients. The patients went ahead with risky expensive brain surgery that no other surgeon would do nor would any neurologists recommend it but he offered them false hope without explaining the risks, according to the families. He did make the financial commitment clear but not the risk of the surgery. Both women suffered adverse events and rather than add to their lifespan they never woke from surgery. The argument is whether he actually told each patient and their husband who accompanied them to the appointments that the risks of death were exceedingly high. And that was before he made a surgical error and removed good brain tissue and left behind tumorous tissue on one woman. The surgery was $100,000 in both cases and half had to be paid up front. In one case he told the woman if she didn’t have surgery immediately she’d be dead by Friday. They were desperate to spend more time with their families so they really wanted the surgery as they trusted the doctor to perform the miracles that he said he could deliver. He’s denying the claims but he has no evidence as he didn’t make notes whereas the husband of each woman did.
Properly obtained consent has to include the potential risks. When I was signing up for Abraxane I had to sign at the bottom near the list of potential risks, the last being death. The form was full so the signature line was beside ‘death’ so I said so I sign here? Beside death? And the registrar said yes. We’re not offering death but it could happen. That wasn’t the first time I was told death was a risk as by then two doctors, one was a junior doctor and the other was the lead consultant, had discussed that and every other risk factor. So I heard the risks in stereo! Although for death it was triplicate.
When I was considering Afinitor I had three months to do the research, ask questions, seek out the final trial report, ask questions, check the side effects and so I would say that I gave informed consent. Can something still go wrong? Of course it can.
But doing nothing won’t lead to an improved outcome either. And the fact is that in very many cases nothing goes irrevocably wrong. I’ve got residual neuropathy from Abraxane. Do I care? No, it’s minor and before Abraxane the Mets were moving rapidly from my spine into my skull. In May I had no Mets in my skull. By August they were everywhere. The Abraxane stopped all that in its tracks and I’ve been stable since 6/2016.
We all have a risk factor we can live with but we don ‘t actually know whether the risk of ill effects will happen to us unless we try it. It’s a bit like buying a lottery ticket but the odds are slightly better. All we can do is consider the risks compared to the benefits and make a decision based on what we know.
I hope you can get your pain levels under control as unrelenting pain is very hard to live with.
All the best
Kerry
congrats🎉Kerry on being stable since 6/2016....that's great!!! best wishes for many more....XO
Kerry- that is so encouraging about Abraxane! Glad that worked for you.
First, I am glad you got your story out there and the unfathomable decision you face.
Second, that we all have such different reactions -- both in effectiveness of any treatment and in side effects -- is such a problem in planning and decision making. You really don't know until you get there, but
Third, it is really important to get the info on any possible side effects that are irreversible.
Fourth, it does seem that we are not always getting all the information we need from our oncologists. (Mine is particularly bad at communication and also not good at thinking about and helping with side effects.) You did give some important questions to ask.
I am the friend who got ONJ from Xgeva (I think I am!). The Xgeva was like a miracle. "Resolved" all my bone mets quickly. The problem was that I began to have dental problems and I couldn't get anyone to pay attention. I started declining Xgeva, but didn't resist strongly until it was too late. At that point, the oncologist said I didn't need it anymore. If only she hadn't just followed protocol but actually looked at and listened to the person in front of her, and helped me get to the oncology dentist, whom I couldn't reach when I needed her. So....things that can go wrong but don't have to. Now I need Xgeva again, but I cannot take it because I have lost pieces of my jaw bone and a few teeth that were attached, and my jaw is already weakened. Unnecessary situation, which I would not be in probably had I known what my oncologist knew but didn't think to tell me.
I had no idea that radiation is a one time treatment. Is that what you said? On the same spot?
I think it is good that Hbbm has heard about two different outcomes. She seems to be someone who can contemplate all sides. It is good to have encouragement, but also the cautions.
Sorry I got into listing! And got off track -- I guess my point is that we are facing decisions that can have lifelong impact, and the outcome is unknown and variable, but also we do not have the full picture.
For horrible pain I've taked CBD oil (rectally), nothing else workt, best wishes
Hello H. I just completed radiation to my spine for palliative care. I would do it again. I was in so much pain prior to that. Yes, my esophagus was affected. My advice for that is chew small bites. They do have a numbing med for that but I didn’t use it. The sensation lasted about a week and I’m fine now.
On top of all this I had spinal surgery at Rhode Island Hospital 2 months ago. This was the third time my back was fused. I have rods and screws holding my spine together. I have no problem doing my daily chores. I thank God for my surgeon.
So long story short I had a great outcome. I am wishing you the best and hoping you also have a great outcome 🙏🏻
I had palliative radiation to these areas and more (though mot to the breast) when 1st diagnosed with MBS. The treatments themselves went well. I have found that when having this or similar procedures that primarily involve me being still, not moving, not talking that l prepare myself by being calm as possible, during the procedure l might rest as l would before sleeping, usually l pray a bit and meditate. I did experience esophagitis which eventually healed completely but for a number of months was painful and eating was uncofmfortable at times; and some bladder and colon side effects that l still have (depending on where your radiation is you may not have those effects at all).Wish you the best, it is helpful to know we can ask for support and information. 🌺
I didn't see your post about this until now, but my experience with radiation was very positive! Not in the same places as you though,. It was about 4 years ago. First, I had one session of stereotactic radiation (many beams at once, all directed at the same apot) to the brain for a small lesion on the surface of the right frontal cerebellum. It was a very interesting process! So many computer screens in the room right outside the rad room, with several techs looking at the screens. The mapping took alot longer than the treatment itself. I don't remember any side effects and my brain scans since have all been clear, (I'm a long timer with denovo bone mets and lobular bc). I may have had mild side effects that I just dopn't remember. Not long after that, I had 15 sessions of radiation to an area kinda midway between my breast and arm pit, where there were cancer cells in a lymph node cluster, putting pressure on the nerves down my arm and into my hand, causing alot of fine coordination problems. I did develope "radiation burns" to the skin in that area. Rad nurse recommended an OTC cream that helped. In the 19 + yeasrs I've had MBC, I've found RNs really informative! My experience with radiation was positi9ve enough that I would not be nervous about having it again! The rad onc I had moved about 80 miles north and I might try to have him again! I liked him alot and trusted him.
Hi HbbM, I was diagnoses with MBC in April 2019 and was advised to have curative radiation therapy to the T10 by a neurosurgeon and three oncologists. I was told side effects if any would be very minimal. I had 5 sessions and did have esophagus burning afterwards as well as acid reflux which I take daily famotidine. The burning was short lived and treated with dexamethasone. A year and a half later I became NEAD. However, August, 22 cancer returned again to the T10. In the meantime I had switched doctors and was referred to another radiation oncologist. This time I was treated with much heavier doses of radiation therapy to the same location. I advised the radiation oncologist of my previous experience and she said she would take extra precautions to ensure that would not happen again. My main side effect this time was tiredness. Thankfully, my most recent scan in March showed NEAD and stated an excellent response to treatment.
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