I got very very depressed watching the high numbers of people in NY dying every day and had to step off. I thought all of us would die in NY. Self-quarantined for three weeks. Although we (NY) are doing better, we still cannot go in stores without a mask, can't walk around in my own building without mask on, still hard to get meat, blah, blah.
Anyway, I had just started the third injection for bones (xceva?) and then the pandemic happened in NY. I had also started had my second visit with my pain specialist. She was giving me 90 percocets (10 mg.) to take 3x a day with gabapentin (300 mgs). She also casually mentioned to me that it looked like my onco thought my back pain had nothing to do with my cancer and that it was just my getting older (I am 60) and/or arthritis. I said I did not care all I knew was that I could not walk without the lower back pain. I had been having for about 3 months severe back pain in which I could not make it down a 1/4 of a block with my lower back burning and I would be in tears. Since I do not drive and have no support system close by, it was getting so hard to even walk three blocks. The pain was unbearable. I kept taking more and more of the 800 mg. of ibuprofen. My onco kept dismissing it until I told her I no longer leave my house bc of this which is when she referred me to pain specialist.
Well , the pain specialist (God bless her soul) prescribed me the percocet and gabapentin and then poof she was gone. They took everybody they could from the cancer center and sent them over to the center's affiliated hospital Maimonides. My onco's PA then took over writing the scripts as it was not known when they would be back. The only patients the cancer center were taking with patients getting chemo. The rest of us were out of luck but it made sense to me. They had to make 1/2 the cancer center into a makeshift hospital and take those patients who did NOT have the virus and move them into the center.
Well, at my request, I asked for a CT scan and an ultrasound before resuming my injections last week. My onco said she did not think I needed it but I said I would like to make sure the cancer had not spread since my last CT scan was end of January. So I did that a week before I was meeting with my onco again and resuming my injections.
Had my meeting with her on Thursday First time seeing her in three months. She proceeds to then tell me (OUT OF THE BLUE) that a radiologist doctor would be calling me, asking me questions and that I would need to have radiation targeted at my lower spine five days a week for 4 to 8 weeks. I was so caught off guard that it did not register. I had seen my CT scan report on the portal and its like Greek to me. I kept seeing stable so that is good. But then this once sentence caught my eye "However, there is a new 1.2 cm lytic lesion with cortical disruption in the left pedicle of T12." I have no idea what that means but it said NEW.
I did not even get to ask my onco when she said somebody would calling me and asking me questions over the phone and that they would want to start me on targeted radiation to the spine FIVE days a week for four to 6 weeks. WTH.
I was so dumbfounded that I could not even think to ask questions.
I came home and panicked. More because I live alone and I do NOT want to be spending my whole summer doing this and I don't get it. A lytic lesion is NOT a tumor from what I read. Using the 3 percs a day and gabapentin made the difference. I feel normal with no pain and was planning on socializing again and then the pandemic hit NY and that was that.
I have already decided when that person calls (She said within a week or so (Really, no day and time) and was not sure who but that is what they wanted to do.) I googled and read Maimonides Cancer Center lost money (as most places in NY did) and now I am thinking they need to get more cash. Since I am on dual coverage of medicare and medicaid, it would not cost me a penny but give them alot of money.
I was terrified until I remembered this is MY Life and MY Decision. I am not doing it. I have the best quality of life I have had in a long time and I will be damned if they think I am putting myself through this. Apparently, I think its like another hole in my T12 (which I think is at the bottom of my spine). I got the impression that my onco was had no part in this decision making.
I am NOT doing it so when they call, I am telling them that. No. So now just in case, I will have to find another cancer center bc I think they will try to play games and say well we will not continue to give you the opiate (they try to be an opiate free place and pride themselves on it.) I think they see me as a "cash cow" and to get some money back into cancer center.
I am stage iv...It is not going to make my cancer go away. So I am just wondering if anybody understands that sentence at all in the CT scan report and why would they think to do this.
It doesn't matter if they told me I would only have six months then. The answer would still be NO. For the first time, I am not in pain and having a semi-life (until we can stop wearing masks and gloves in Brooklyn) but other than that I see no reason why I should agree to do. I am not going to agree. I have no support and feel fine now so I want to leave well enough alone.
Anybody on here more well-versed than me might explain why. I think its just for the money bc they lost so money as the cancer center was basically closed. I am trying to find another place (although I liked Maimonides) but if they tell me I have to or they will cut out the meds, then I am leaving there.
Is it me or what? As a stage iv, if I am having a decent quality of life finally, why fix something that is not broken.
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kearnan
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First, so glad to hear that your pain is under control and your quality of life improved. That is huge and I completely understand your desire to not rock the boat and to enjoy these days...even if it is in a mask.
I'm outraged at the attitude of your oncologist, making an announcement like that out of the blue, not explaining the scan results, dismissing your pain as "old age" or arthritis. How many of us have heard this script before? When will oncologists learn not only how to communicate but how to listen to their patients, especially when pain is involved!
You have every right to refuse this or any other treatment. Always, always your choice. But before you do, I suggest you get a little more information so you can make it the most informed choice possible.
I am not an oncologist or radiologist. I do have lots of bone mets however, and am familiar with some of these terms. You are right that a lytic lesion is not a tumor, rather a softening or even hole in a bone that can be caused by cancer in the bone marrow. Sometimes it's called osteolytic. They are more common with multiple myeloma but can also occur with breast and other cancers.
I would be concerned that you have this on your T12. You're right again that it's at the bottom of your spine, and it bears a lot of weight. The pedicle attaches the vertebrae to your rib so it may not be as critical to weight bearing as if the lesion were right on the T12 vertebrae. This is a question for the radiologist.
Without committing to anything, it may be worth talking with the radiologist and asking more questions. What would radiation do to this site....would it help the bone rebuild, or would it just prevent further softening? What other ways are there to treat this? Is it true that the rest of my bones are stable and this is the only spot of concern? My oncologist mentioned 4-8 weeks of radiation....that's a huge difference in time. What determines how long I do radiation? Could I do it fewer days/weeks with some benefit? What are the side effects? What do you expect will happen if I don't choose radiation? etc, etc.... We pay these people for their knowledge, let's get our money's worth! Other friends here who have had radiation on bone mets can probably give you more advice too.
Whatever you choose, I hope you continue to get the pain meds you need and stay feisty! New York STRONG!
I got the impression when my onco told me that this was NOT her decision at all and did not come from her. But I agree with the fact that she should not have put that in comments to the pain specialist. Especially since my last Ct scan on January 31, 2020 said in last paragraph entitled IMPRESSIONS and then underneath all in caps it read SCLEROTIC CHANGES OF THE LEFT ANTERIOR .,...BLAH, BLAH, BLAH. THIS IS SUSPICIOUS FOR MALIGNANCY. CONSIDER BONE SCAN OR MRI OF THE LUMBAR SPINE WITH AND WITHOUT CONTRAST FOR FURTHER EVALUATION.
She never said anything and I had neither. I think she never read it quite frankly. So that was a male radiologist doctor who interpreted that scan and my latest was a woman radiologist so maybe since she found something she looked at my last scan and realized the above was noted but my onco did nothing.
It still boils down to I am not willing to put myself through that. I want quality of life and for now, it is fine with me.
I am a pessimistic, live in NY and non-trusting of doctors, billing , etc. Read how much Maimonides Cancer Center lost when turned into a hospital. I just feel like they need to infuse more money in. I am not bringing in any money for them if all I am doing it take percocet and gabapentin and getting my regular injections. I read how highly expensive these treatments are and I am not doing it.
I think was done over my onco's head. I also think she failed to read the January report otherwise she would not have suggested to the pain specialist that she did not think it had anything to do with cancer.
Hi Kearnan...Welcome back, I've missed you and am glad you've fared okay during this pandemic.
I've tried to learn a bit more about "cortical" and it's still Greek to me, too, but my general sense is that the tumor/lytic lesion has infiltrated an area where it can do more damage, maybe neurological? Maybe "cortical" refers to the spinal cord? (I have no idea...I made that up). But it does sound like something you'd want to treat/radiate. If my memory is correct, you've done pretty well on your treatments so far, and I think things could possibly head south pretty quickly with the cortical issue (??).
Is it possible for you to get a second opinion? Or, at a minimum, ask your docs to review things with you again and in more detail, with you voicing your concerns? Perhaps you can even have a second radiologist at Maimonides confirm the dx?
I do hope one of our fellow board members with better medical knowledge responds soon...
But I'll add this: If my docs were willing to radiate even one of my tumors, I'd jump at the chance. Fry the f@#4er, even if not medically justified. Plus (said more meekly) I'd be really reluctant to let the cancer spread more in my spine, spinal cord, whatever, etc., unless I had no choice. I'd not mess with that...Let them make their money.
But, on the flip side, radiating the spine does come with its own risks...So I'd be sure to ask about those.
My two cents...
I'm glad to read that you're feeling well with the pain meds, etc.!
It is not a tumor. A lytic lesion is not even a tumor. It is some kind of hole that the cancer cells get at. Nope, I will take my chances. I am not doing that kind of radiation for weeks, five days a week for several weeks. No. Quality. I would rather have less time.
Thank you for the laugh though. I read this and laughed aloud.
"Maybe "cortical" refers to the spinal cord? (I have no idea...I made that up)"
Glad you are back and your pain is controlled . All the best with your difficult decision. I would want more information about the radiation treatments maybe the person calling you will be able to answer your questions . I would have to make a long list of questions or I would forget to ask when on phone or at appointments .See what they have to say .
Thank you. But I am stage iv. For once in this journey, I have a better quality of life health wise, the way I feel. Unfortunately, I cannot do anything bc everything except groceries stores are closed.
I am not going to have radiation on my back five days a week for four or more weeks. I was really stressed until I came to that decision. Whoever calls is going to be asking me questions, so I will answer them and let them know I have no plan to do any radiation at all. For me its all about quality of life, nothing more. I have no children, siblings, etc. so I don't have that desire that most have to be able to witness their children getting married, or grandchildren being born. I just want to enjoy the rest of my life feeling as decent as I can.
Kearnan, I'm so glad that you've figured out what you want/don't want. That's a gift, for sure! BTW, we're all Stage IV on this board, so we very likely have similar issues to what you have. I wish you the best, and peace/happiness! Take care, Lynn
Thank you. The pandemic took quite a toll on me. I was crying every day. After a while it was like 9/11 watching the planes again and again and I just had to shut off the TV and we had to quarantine for three weeks and it was like a horror movie and the first time I went out, it was so strange. Everybody wearing masks and if you seen someone coming, one of us would step into the street.
I am so glad you have your pain under control. When you have uncontrollable pain every day you can’t function or even think straight. Being pain free will greatly improve your life.
That seems like an awfully agressive radiation treatment. I have had radiation a couple of times, for pain control and it was one strong dose to my spine. The other was five treatments to my neck/base of skull and five to my hip. I’m not a specialist but what they told you sounds more like a treatment that would be given to a stage 1 patient when they are trying to cure them. Definitely get a second opinion.
I totally get what you’re saying...I’m the same over the chemo which is why I’ve refused it and having Faslodex injections
I’m still able to do things I like...not as before but can ride a bit and walk when I want...had a transfusion which has helped...I’m a wreck emotionally
I did have SABR radiotherapy last year for a liver met but although it worked for that met I developed more so it was a waste of time imo and the side effects were hideous
However that type of radiotherapy is very strong but only five sessions...maybe you could enquire about it?... the side effects probably wouldn’t be as bad as mine as it was my liver
I agree that quality of life pain free is to be embraced...perhaps just find out more before you decide ?... I’m like you though fed up of having things done to me that make me feel crap
Glad you are back on here as you were missed! I can’t help you with advice but just glad you are not in pain and able to start getting out again ( albeit with strict restrictions) . Take care ! x
Hi there
Glad you are well and survived the scary NY pandemic.
You sound like you have already decided on your plan of action - or non-action. If that makes you happy then go for it.
Maybe just hear them out about the treatment, to get more answers about what is going on in your spine. Cortical is a type of bone. It’s the outer, hard protective casing. Beneath that is the softer bone called cancellous bone.
Hope this helps
Clare x
Hi , I had a lytic lesion on t5 . I had cyberknife to remove . It is a form of targeted radiosurgery . It can be done in fractions of I , 3 or 5 . I had it done in 3 .
You have a staging mri and then you are done and dusted in a week . I had no side effects . Could you suggest this ?
• in reply to
Hi Bren,
I was wondering if the cyberknife was effective? Did it remove the lesions in your spine? I have two small lytic lesions in my spine too, but my oncologist was against the idea of having it done. I want to mention it to her again and see if I can get her to change her mind.
Sophie
• in reply to
Yes on follow up scans the lesion was gone ! No side effects . My original radiologist referred me to a different hospital as they didn’t do cyberknife
• in reply to
Thank you! Are you in the UK? I really want to get this done, even if it means going private.
I also have tumours in my spine. I had severe pain in my middle back for about 6 months and then did radiation for two weeks, 5 days a week. I was very tired and not feeling the greatest but my pain was gone and I started to feel better. It was worth it.
So sorry to read your news. Jumping in with a quick thought that you meet with the radiation specialist and see what she says. My thought is that there may be a way to accomplish radiation much more briskly with something super targeted. I agree that sounds like first round treatment, not stage four! Worth talking it through!
Dear Kearnan, it is important to do what you want to do as it is your life. Nobody else's. But, I would talk with the radiologist.
According to the National Cancer Institute a lytic lesion is:
Destruction of an area of bone due to a disease process, such as cancer. If it were me, I would want to explore this. It could be what's causing your extreme pain and radiation could give you a great deal of relief. If it is cancer causing it, it can stop the growth of that tumor.
I’m too am glad to see you back! But please take some calming breaths before you attack this! I’ve seen you jump to conclusions before you had all the facts and then have to reverse gears. We all do this at times, I think! Talk to the radiologist with an open mind. I would ask if you can have a face to face appointment so he can show you pictures of your scans. Go with questions written down. What happens if I don’t do this? Will I continue to get my pain meds? Will my pain get eventually worse? Will this prevent it from getting worse? Are there radiation treatments that aren’t so harsh? Think of every question, write down the answers, tell him you are going home to think before you make a decision. Truthfully, good doctors don’t make decisions like that on how much money they will make. If that is your firm belief, then you need to find a clinic you trust. I’m not trying to be an obstructionist here, I just want you to make a rational decision that will be best for you over time as opposed to an emotional one. I had a 10 day course of radiation that made all the difference in my life. I would have rejected further treatment had the radiation not resolved my back pain. We care. Hugs Elaine
If I were you, I would contact another cancer clinic and ask if they would have time to review your most recent scan. Get a second opinion.
While you are feeling better due to the pain meds, please don’t let this rest without discussing with another radiologist/oncologist whether that schedule of radiation makes sense.
Sooo glad you are back. I have never had radiation and don't know anything at all about it. But happy you are with us. You give people such good advice.
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1.31.20 CT scan w/contrast of my lumbar spine due to my back pain. Rad. report from scan. Need somebody to look at last paragraph.
