I'm looking for a little input if at all possible. I inquired with Dr. Myers about Salvage Radiotherapy for Elgie's shoulder and possible bone marrow involvement. He agreed that we should consider Salvage radiotherapy and suggested that we go to Memorial Sloan-Kettering in New York. That is 3 hours away from us. We would normally go to Ann Barshinger Cancer Institute in Lancaster Pennsylvania. Do you believe it is in Elgie's best interest to do the radiation? Do you believe it's best to go to Memorial Sloan-Kettering in New York? Does anyone have any idea a guesstimate of how many treatments that would take as I am awaiting an answer from Dr. Myers. Trying to figure out if we would be able to do this. Thanks so very much for any input and I appreciate all of you. Hoping and praying and wishing that everyone is having a nice day free of pain.
Most sincere,
Jackie
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erjlg3
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The first source cited above says that radiation may be applied a single time, or a series lasting up to two weeks. The second source said one to three weeks of treatments. In addition to the treatments, it looks like the docs will want to do an MRI and maybe some x-rays of the affected area and study the results to figure out the best way to target the radiation. I'm thinking that the docs may be able to tell you something about how many sessions just based on their experience with radiating shoulders, but they may not know for sure until after they've seen the scan results.
Here are my thoughts on the question about Memorial Sloan-Kettering (MSK) versus your local cancer center.
There must be hundreds of cancer centers in the U.S. Dr. Myers can't possibly know about all of them, but he does know about the famous ones. So I'm thinking that when he recommends MSK he's not doing it because he thinks your local center isn't good, but because he knows that MSK is good.
In my personal, inexpert opinion, it is very important to find a very good radiation oncologist. However, I think there are very good doctors in many local clinics as well as in the famous ones in the big cities. If you can find a very good doctor locally, you'll get treatment just as good as that at MSK. What you're looking for for Elgie is not some new, experimental treatment that can only be found in the teaching and research hospitals like MSK, but a pretty standard treatment that's been in use for decades and is available locally.
In order to avoid the time and expense of going to New York, you might try this: Ask your local doctor if he knows a good radiation oncologist at the local clinic. Also, call the local clinic and ask to speak to someone in the radiation oncology department. Tell the person that your husband needs radiation to alleviate his shoulder pain due to prostate cancer that has spread to the bones and ask her if she can recommend a doctor at the clinic who does this well and that she would recommend. If she's just a receptionist who doesn't feel that she can do that, then maybe she can put an oncology nurse on the phone to help. Then make an appointment and go in for a consultation.
What I look for in a doctor is, does the person seem honest, conscientious and sympathetic? Does he or she listen to your questions and give thoughtful answers? Does he take some time with you or rush you through, answering questions without really hearing what your trying to find out?
Again, in my inexpert opinion, I think that a doctor who is conscientious and sympathetic, one who tries to do the right thing, will usually succeed - especially in a treatment that is well understood and doesn't require some brilliant state-of-the-art ideas to figure out, or some concert violinist like physical dexterity to perform. If you can find such a person locally, I think there's no need to go to New York. If you can't, then you may need to look further, though there may still be one closer than New York. Note that this this isn't a life or death treatment decision. As long as the doctor doesn't do anything stupid, he's going to help with the pain.
I thank you so very much Alan for all of this information. As I wrote below to Yost... LG does not have any pain at all in his shoulder. We were just hoping to knock the cancer down a little more along with the xtandi. Not sure if this is possible with radiation if it has gone into the bone marrow I will sit down at my computer where I can open these links in a little while and thoroughly read the links that you sent. I'm sitting in the store parking lot reading my replies. You had a wealth of great information that we so much thank you for. It is definitely going to help us to make the decision and try to stay closer because that is so far away when we have so many Furry Friends to find someone to care for and we have no friends in that area..... where we did when we went to Dattoli. Your message has very much helped me to feel more comfortable with discussing with lg about trying to get treatment at home locally. I always feel that you can't go against what a doctor says or you can't question it and I know that is wrong. It's nice to have a little backup thoughts from others with more knowledge. Now as I've said before I do not know anything about this nasty disease except what we have been through and I am wondering is this something that Xofigo or chemotherapy would help? I guess I'm trying to learn as much as I can about what I can do to help Elgie. Thank you so very much again Alan and everyone. I'm wishing everyone a feel good weekend.
When I had my left rib radiated because of bone Mets pain, it was five sessions, but relief started after the first session. It sounds to me like both Penn and Hopkins would be closer to you, and both have outstanding radiologists.
I am sorry if I misled about the reason for the radiation it would have been an accident. LG does not have any pain at all in his shoulder area. The Salvage radiation would be to try and knock it down was my understanding so that it wouldn't spread much farther. As it is I do not know much about this nasty disease. Again LG has no pain. They switched him to xtandi because they thought the casodex is not working. I was hoping the Salvage radiotherapy would knock it down some more. I am not sure if this will help if it has gone into the bone marrow. The report said the left humeral head and possible bone marrow. If he does not have pain do you or anyone think this is a waste of time for Salvage radiotherapy? I hope you are having a decent day today Yost. Always in my thoughts. Wishing you and all and nice weekend. Hugs, good wishes, thoughts and prayers,
Also Yost......that is so awesome that the radiation helped your pain after the 1st session. That's also so helpful to know. We will check into both Penn and Hopkins. You have helped us tremendously!
I think you have gotten some good advice. However, most folks are speaking about palliative radiation (I have had this done to my shoulder as well as my thoracic spine). This is normally done to relieve pain not necessarily as a way to knock down cancer spread. Since your objective is not palliative care maybe someone at MSKCC is working on this type of radiation. Radiation oncology is a very complicated science, not necessarily in the actual treatment, although having great technicians running the machine is critical, but the planning for the treatment. Figuring out the angle of attack dosage and what type of radiation etc can be really complicated. One other thing to keep in mind that there is a lifetime maximum amount of radiation that any one area of the body can receive so you may not be able to have additional radiation to this area for palliative purposes. This may be some of the reasons to go to MSKCC at least for a consultation.
Of course this is just my opinion based on my experiences. I am not an expert. I had salvage radiation (40 treatments) done at MSKCC. I had palliative radiation done one my spine (15 treatments but had the choice to have it done in 10 treatments) done at Greenwich Hospital ( part of Yale/New Haven) and my shoulder done at Stony Brook University Hospital in 10 treatments.
Hi Bill! This is more helpful than you can imagine! I have read over and over and over every message that each of you have written every message has come from experience knowledge from the heart or expertise and it shows! I know I will read this again because it was so helpful. I am we are wishing you the very best with your shoulder and your spine and any other areas. This information gives us a better understanding of why LG would go to Memorial Sloan-Kettering. Thank you so much for all of the thought that you put into the message each and everyone of you also.
It is well established that the more experience a doctor has the better the outcomes, this includes radiation. MSK has an extraordinary amount of experience, so yes, you should go there if you can arrange it.
Hi Jackie, throwing a curve ball here. We've gone through an L4 spot radiation. There was significant pain. We went to one of the leading centers in the country and were told they could not say for sure that it was cancer in that bone. Then we were told by our oncologist the only way they could know for sure is with a biopsy of that area and even then there could be a false positive. We had the best scans.
We did go ahead with it and got relief from pain but not completely since apparently the nerves in the area can be inflammed for some time, and, or, there are some disk problems. We were avoiding a spinal compression.
We did end up at a smaller medical facility and have no regrets we did learn a lot from getting the two opinions From both we were told they really can't be certain of anything since everyone is different A leading radiologist in the country said, he has guys where it helps the pain, others have disk problems that can't be determined to what extent is the cause of the pain and they aren't much better after radiation
I know I'm talking about pain and LG doesn't have pain which is wonderful
I guess I'm left once again, for the most part with our honest great docs telling the truth and not shooting from the hip, they don't know
We cover our bases, have leading docs in this field who continually give a similar message, they don't know. This is why I'd go to Sloan and hear what they have to say. With information you can make decisions you can live with The answer will come genie
To add to this with what I consider good information. We were told that PCa is one of the cancers that responds well to radiation. We were happy to hear this and are grateful for every gift coming our way.. genie
Thanks so very much for your input. I'm so glad to hear what you and everyone have to say. It gives us a better feeling when making this decision to hear the stories of lives, input, decisions others have made and feelings of the decisions that others have made. I'm so glad it helped with the spinal compression but so sorry it didn't help much with the pain. Sounds simular to lg as they couldn't definitely say what it is even with all of the scans and the biopsy did not work but what else would it be and Dr. Myers and local onc. think it is cancer. We will have to talk to Dr. Myers before we make our final decision. There wouldn't be any decision at all if I could go with him. We would be right there.
My best....Our best great wishes for both of you ♡
Hi Jackie, clarification. My husband did NOT have a spinal compression. We were preventing the possibility of a spinal compression. Also, he got a huge amount of pain relief. We are looking at residual pain not sure from disks and, or, nerve inflammation from radiation.
You"ll make the right decision.
Really if you get good radiologists input, they may not agree with Snuffy Myers.
You will have to go through the process of opinions. As far as what could it be? What are previous scans showing?
I did understand that you were trying to prevent a spinal cord compression. I probably didn't clarify that so well. I am truly so glad that it did prevent it. I am also so truly glad that it helped relieve a lot of pain. I so much wish and hope and pray that your new course will tremendously help.
It most certainly is Genie ♡ Elgie had that shwanoma Tumor on or near his spine and Dr. Myers caught that one just by reading it. He told us to get right to the hospital. We had to try and explain to the doctors they did not see it and then all of a sudden they did another scan and they said we see what you're talking about. That is after our local oncologist told us three times there was absolutely nothing wrong go home and stop worrying. At that time she was in a lot of pain. That is why we kept going back to our local oncologist because of the pain and he was saying there's nothing wrong. We so much need each other and the sharing.
I just found out that schwannoma is a cancer of the nerve fibers, so I can imagine the pain Elgie's been through. And, to have it been missed this often is plain nuts. All the best moving forward.
Hi Joe, Thankfully LG's turned out not to be cancerous. We were told that if it would have been cancer he would have had about 15 days to live! This was a very painful episode the schwannoma tumor but once they took it out the pain was gone. Thanks so very much Joe for your thoughts. HI hope and pray that you're doing good
I am so sorry I do not remember what scan showed it. It's been a few years ago and I have lost track of even the latest scans. It would have been either an F18 or an MRI or CT. Those are the only scans he ever has done. We wish we knew what made dr. Myers see it just from a report that was faxed to him. None of the other doctors noticed it whatsoever. I wrote a note to dr. Myers and faxed him the reports because LG was in so much pain and he said get him to the hospital right away. We were a little embarrassed to go since we had been turned away two or three times already but finally the ER doctor looked a little deeper into the situation and he said I think I see what he's talking about. I'm so sorry I don't have any more information to be able to help you. My heart goes out to you and your husband always. Take care of you too Genie.
Thanks Jackie.. we are grateful during good and not so good times... right now being in CA we are in a good weather time, so the sun always helps us feel good, although for sure, we need rain badly ...
I'm so glad the weather is benefiting both of you right now. We have not been able to enjoy the outdoor weather this summer due to the extreme heat and humidity. I will do a rain dance tonight for you Genie while wishing hoping and praying for rain for California!
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