Bone Mets Thread
Comments
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Carol: I agree with all - we have enough to deal with than to have expiration dates added to our diagnosis. This statement by the medical community is a failure on their part on not knowing what comes next.
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Hi TarheelMichelle,
I'm getting chemo to shrink the tumor in my breast before the tumor is removed. The original plan was to have two chemo treatments, surgery, and two more chemo treatments. That was before the bone scan showed mets to my shoulder blades and neck. There will be more to the treatment now. I'll be talking more to the doctor about it today. By the way, did you mean to say this? "Chemo may not work on fast growing cancer as effectively as slower ones." Did you mean to say the opposite? I have slow growing, non-aggressive cancer.
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Carol, I am pretty sure you have it right - I'm sure Tarheel meant to say that "fast growing cancers respond better to chemo than slow growing ones." My MO wanted me on anti-estrogens rather than chemo for bone mets, but I had already had chemo that obviously didn't work to eradicate my cancer, and it was "intermediate" grade.
Questions I would ask today:
Is chemo DEFINITELY required? Anti-estrogens are slower, but MAY be more effective than chemo with slow growing tumors.
Is surgery DEFINITELY required? There is controversy over this for stage IV. I am glad to see they are at least thinking of shrinking it first as that will make the surgery easier. If surgery is recommended, which surgery? With or without lymph node dissection? With or without radiation?
Ask yourself: are you comfortable with your team and do you trust them, especially your MO? This is THE MOST IMPORTANT part. You have time to consider ALL your options - you do NOT have to rush into chemo TODAY, you can take a couple of weeks for second opinions if you feel like you need them. Of all the decisions I made in the first weeks after diagnosis, I did NOT make that phone call to ask for a second opinion, and have regretted that ever since. My outcome may have been no different than it is, but the journey would have been easier. I did not trust my MO, so the first 2.5 years of my journey were extremely unpleasant. Just over a year ago I finally got a new MO and despite having mets, am now finding the journey 1000% easier.
So sorry you are so suddenly pushed into this rather elite club, but its members are some of the most welcoming and sharing and loving people you can hope to meet. Best wishes today.
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Thanks for the reply and the advice, Linda. The lump in my breast is pretty big, so I'd be happy to have it removed. I don't think it's going to shrink into nothing no matter what they do for it, so I'd rather see it gone that sitting there in my breast. I'm sure Chemo won't be the only thing that will be done. All things considered, I consider myself lucky. I could have the "bad" cancer and it could have spread to the lymph nodes and other organs, but it didn't. Let me rephrase...the PET scan showed no spread to any soft tissues. Could the lymph nodes still be involved? My understanding is that they would remove the lump and surrounding tissue, including two lymph nodes, more if there was lymph node involvement. That was the plan before the mets was discovered with the bone scan.
At this point, I have no reason not to trust my MO. But I will certainly be asking for more details on the long-term course of action.
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Have very painful bone mets that leave me with little mobility. I've had some chemo, radiation and hormone treatment that's helped a bit. But mostly I'm tired and kind of wish there was a way for this disease to take me quickly. I'm 52, have no children and have had a very interesting, adventurous life. Now I'm just ready to go. My oncologists both try to persuade me to do more treatment but I'm not interested. .
On another topic, I've only had 2 CT scans, once at diagnosis and again before I started chemo. No PET scans and one MRI. This is over the course of 16 months since diagnosis. Reading the posts of you gals on here, it seems like you're doing scans every time you turn around.
Had an Interesting convo with my radiology oncologist today. Told him I'd like some scans to show me how disease is going. He asked why I would want scan, what i would do with information. He said he could tell me what the results of a ct scan would be, namely that disease has spread. He said there's no need to be tracking the disease all the time with scans. At first I wasn't sure what he meant, but after thinking about it I think I know. We patients are curious, want to know where the mets are, how many, etc. but what good is knowing that? I guess particularly in my case where I don't want a lot of treatment. I'll have to ask him tomorrow when I see him (I have agreed to some radiation on painful spine mets) if that opinion re doing so few scans is just for me or for all patients.
Long story short, you Americans seem to get a lot of tests, scans. I wonder if that's just to keep the medical system money machine going, or if the scans are actually needed, not just wanted for natural curiosity.
Quite tired and typing on a damned ipad which is difficult...so not expressing myself as precisely as I'd like. Anyway, just tossing it out there...how often do you think we need, should get various scans AND wondering about experience with radiation to mets on spine.
Thanks! You are all so wonderful. Appreciate the time you've all taken to share info, encouragement, etc.
Good night!
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Linda, thanks for explaining what I meant. I'm a little foggy sometimes.
Carol, I get what you are saying about trusting your oncologists. I have trusted all my oncologists, even the ones who recommended chemo for me. What made me search outside my geographic area for better care is that my cancer is a little odd and I wanted to see an oncologist who was accustomed to seeing unusual cases, not just routine cases, and had access to the newest drugs and research.
You may have lymph node involvement. I don't think nodes are considered soft tissue because they aren't an organ, right? Should be on your report. When I was diagnosed with Stage IV it was in my lymph nodes. But not present in my sentinel node 4 years earlier at Stage I when I had lumpectomy.
Chemo is not the only way to shrink breast tumors. Some women have had great luck with anti hormonals shrinking tumors in a matter of 2-3 months (in the breast and elsewhere) and those meds are much gentler than chemo. I had some 2 cm lung tumors reduce to barely detectable in 3 months on exemestane.
Someone else can verify but once you are at Stage IV there is no hurry to remove the tumor in your breast because the cancer is already present throughout your body. It won't make you sicker or make the cancer in the rest of your body grow faster if the tumor remains in your breast. I have a couple of lumps on the right side of my right breast but we aren't removing them because they are getting the systemic treatment. I am getting a skin met under my arm removed because it's painful and near the skin surface.
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Virginia -
You inspired me to join again. Your post was so spot on. Thank you...you ladies do understand what we're going through and what we've already been through.
Karen
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Karencanada ... I get scans every 3 months ... the reason is to see if the cancer is responding to the treatment I'm on. If it's not or if it shows more progression, the treatment is changed. No sense wasting time on a treatment that is not effective.
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karencanada,
Welcome!
My onc gives me some type of scan if there is evidence of progression(new pain or other symptoms) or every 6 months, at this point, to be sure that the meds are keeping my bones stable. If they were to find progression in my bones, it's important to find it before it destroys more vertebra and possibly leaves me immobile. That finding would indicate a change of treatment, and maybe another round of radiation. He is also concerned about progression to soft tissue, which would indicate probable chemotherapy, which I have yet to have in my 7 years with BC.
I don't think any of us are getting scans because we're curious. We are trying to maximize the treatments available- the many hormonal and chemo drugs- to knock back our disease. I would gladly forgo the MRI I will be scheduling this month. I hate them! I usually need to take something just to get through it, as they make me claustrophobic. But how else will,I know if the drug I've been on for the last 2 1/2 years is still working?
If there were an easier, cheaper way, I think we'd all be lining up for it.
I'm so sorry you are in pain. I also hope your doctor will be monitoring you with scans down the line, although if you are already telling him that you aren't willing to do more treatment, he may feel there is no reason for a scan. I could imagine how a bit more radiation might help with that bone pain that hampers your mobility. Would you consider that?
Best wishes to you and I hope you can find some relief soon.
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Hi Karen.
I'm so glad you reached out. And I'll tell you--you are not alone in having these thoughts. I have not had extensive bone mets or spread into other soft tissues, but I've still had the thought nonetheless. Many times. Pain, lack of mobility, expenses, etc.--I think it would be odd if we didn't have them.
This disease is the shits. After many months of pain and then deep fatigue (which, in hindsight was the Letrozole), I finally emerged at the end of January feeling fabulous. Sure I had some aches and pains, but my energy level was wonderful. I told everyone who asked that I haven't felt this good since before I was diagnosed--and it was absolutely true. Two days later I was felled with lower back pain--where the fuck did this come from, I thought. Then a routine PET scan that had been scheduled for a few days later and, well, they found the lytic lesion in the sacrum. Fucker. I felt FABULOUS! And then this bastard destroyed my happiness. But I don't have a choice, I want to be independent as much as possible for as long as possible.
As for scans, I've had scans every four months or so since being diagnosed to see how treatment was working on my primary tumor. I got to see lung lesions disappear, lymph nodes resolve, a bone lesion become large, then smaller, and I've seen progression--the most recent just told me that I've had a progression in my sacrum (for which I'll have radiation). My primary tumor is still in my breast, though it is much, much smaller. It may very well be a case of feeding the money machine of health care--but that is such a deep cultural component I don't think it's possible to separate. But I'm glad I get them routinely. They would slow down had I been stable for much longer, but alas things are still active.
I am 54 and I really do understand your desire to just throw up your hands and be done with it already. I don't know your situation intimately so I'm sure as hell not going to compel you to think otherwise--you know what you're doing. And we have that right, I believe, to make that choice should we so desire. The simple fact that we are young women and that we have to even contemplate this course goes to show you how horrible this disease is. It's not pink and feminine and fun. It's everything but.
I sincerely wish you all good things, Karen.
Warmly,
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Karencanada, I have felt very much what you are describing for over 3 years, since my diagnosis in July 2010. I have had multiple treatments, each of which has brought its own set of miseries, including successive losses of fine motor skills in hands due to chemo-induced peripheral neuropathy, severe SEs from tamoxifen so bad that I discontinued it, surgery which left me with more neuropathic pain and lymphedema and less function. I no longer take it for granted that I will cook a meal each day, practice my piano for half an hour for pleasure, and spend several hours on the computer doing my job and email. I no longer take for granted that I can take a walk in the beautiful fresh air without wearing restrictive "panty hose" on my arms, never to feel the warmth of sun combined with the gentle spring breezes as I walk along wooded trails all day ..... well, my life has been very difficult and I have been praying for a quick exit since the beginning. And then, all of a sudden, JUST LAST WEEK, I felt better. I felt like I could do this. I don't know what changed. I had certainly tried lots of meds, none of which helped and most of which made things even worse. I wish I could tell you what happened, because all of a sudden, I feel better than I have in over 3 years, DESPITE my limitations and disease progression. But I also know it won't take much to get me back to feeling bad again - had some "panic" feeling last night that I was slipping back into those old feelings. What I am trying to say is that you are not alone, and if there is anything I (or anyone else on here) can do to help, just let us know. We are here to listen to you, to send you virtual hugs, lend you virtual shoulders to cry on, share your journey with you as you take each step, one step at a time. Sometimes those steps are painful, but if you can at least look up once in a while to notice something beautiful around you, or notice the love someone sends you, or maybe find a moment of peace as you experience a moment of silence ... these moments are all that you sometimes have to get you through the next moments.
May you be filled with lovingkindness; may you be free from fear and pain; may you be at peace.
Linda
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I am sure learning a lot here. And I am so, so sorry that some of you are experiencing such pain and are having a hard time. Karen, I understand what you are feeling. I feel some of what you are feeling. I'm not throwing my hands up, though. Then again, I just started on this journey. I'm 67 and I've had a good life. Many people don't make it to 67. A few more years is a bonus. Of course, it would have been nice if I didn't have the bonus attached to breast cancer with mets to the bone.
I spoke with the doctor today. I am getting 4 chemo treatments, one every three weeks. There won't be any surgery to remove the lump in my breast. He said that sometimes they do a mastectomy, but usually once the cancer has spread to the bones, there is no point in removing the lump as the cancer is already in the bones and could spread from there. If the pain in my back gets really bad, I can get radiation on the painful places. I will see the doctor in two weeks. I know I'll be feeling tired, but with the medication I'm getting, most of the pain is gone and that is a real blessing.
The one thing I dread is living with so much pain that I can't do anything. I am not physically active, but I do a lot of writing. It would kill me if I couldn't type because of pain. I think I'd get Dragon software that will type what you speak. But endless pain? Not a good way to live. And I don't want to be in a state where I need help living. That's not living either. To me.
Anyway, I'm still learning about this disease. I'll probably end up doing a lot of reading on it. I want to know more about mets to the bone.
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Hi Karen. I think I know a bit about how you are feeling. Pain and side effects cause cripple fatigue and when daily activities are hard, I sometimes get fleeting thoughts of things ending a bit quicker. You asked about radiation to spine mets. I just finished 14 rads to my Cervical and thoratic spine on Friday. Where are you going to get rads? I'm happy to share my experience with you if it's relevant.
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Hi NickyJ. This has probably been said before but I had I just one dose on a very painful tumour on my hip that had been stopping me from walking for the 3 years from diagnosis. Finally the Onc agreed for a dose of radiotherapy.
Radiotherapy worked in just one pain-free dose, heaven! The radiotherapist said that if needed I could have have another one or even two on the same hip area. Don't need it though.
Wish I could have the same treatment on my lungs .but it doesn't do the job on lungs.
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Jac53 and Romansmom, if you wouldn't mind sharing more about the rads, I would appreciate it.
I'm new to this thread and pretty new to stage IV, with mets to my pelvis, femur, rib, and cervical spine.
I had said on another thread that I was trying to do other things and not rads for the pain in my hip, but after talking about it some more with my onc and one of the nurses, I now have an appointment to talk to my rad onc about it.
I went through rads to my reconstructed breast and underarm area when this whole thing first started, so, for myself, I kind of know the basics, but first hand experiences would be great to hear (how did your skin hold up (that's the crazy minor thing I'm focusing on today)? or is that not a problem with a shorter course of rads like this?).
Thank you!
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RosesToeses, the rads we receive for the mets is a little different to the rads that are given as part of the first round treatment plan. The number of treatments is much less so the skin, at least for me, was not effected other than it got a little dry but was not red and did not break up. Once the setup was done, for me, each treatment lasted about a minute and I had seven.
I think you will find that to begin with the pain may feel a little worse but then should dissipate and leave you feeling much relief.
Love n hugs. Chrissy
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Roses toes I had horrible pain in my right hip, had difficulty walking and when driving it hurt hitting the brake pedal. Tried pain killers. The meds worked on the pain but interfered with getting things done. Did rads in the fall. At first it did get worse but eventually the rads did work. Rads to the pelvic area does affect the bowels. I also experienced the fatigue. You also might want to stock some panty liners. My skin was not burned, but I still did use lots of cream for the skin. No need for the expensive prescription stuff, over the counter cream worked for me. It did take a few months for the full effect to take care of most of the pain. I had 10 sessions which helped some but not enough so the radiologist said I should try a boost of 5 more, did the 5 more and now I feel a whole lot better. As usual I found that scheduling the sessions for one of the first appointments of the day kept me from having to wait too long when they got backed up. Good Luck Charlotte
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Welcome Carol. I'd echo what the others said. My first oncologist said 2 years and plan for hospice. My current oncologist (who I love) said he has plenty of patients who were more advanced than I am who are still here 15 years later.
As to why I love my oncologist...I've been having a lot of pain in my hips and back and shoulder. It's just at the top of the pelvis and really sore. So I went to see the oncologist and told him I might be being neurotic, but had new pain that's persisted. So his first words were "bone scan". Just got the results and NO PROGRESSION!!!!!! Whooooo Hoooo! I have the family disease of choice - arthritis. I am thrilled and happy and glad and excited. What a nice one year anniversary (was dx Feb 2013) to know that I'm arthritic and neurotic!
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Chrissy and NYCchutzpah, thanks for the information!
I'm glad to hear the skin will probably do better since it's a shorter course, I think I got away better than many with my skin on the breast radiation, but thinking about it on places where I move and sit was making me a little nervous.
I was wondering what kind of angle they would have to take to get in there, but I hadn't thought as much about the bowels and other things that would be in the way. I'm glad you said that, I see my RO today and I'll discuss that with her when I do.
The pain isn't always so bad, but there are times when it is and I would be glad to be rid of it and moving around better, maybe even able to take a walk when good weather finally decides to stick around for a while.
And KiwiCatMom, whoo-hoo for no progression (and even whoo-hoo for arthritis!)!
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Yay KiwiCatMom!!!! So glad it's just arthritis!!!.........isn't it awful that we celebrate arthritis.......lol......but it sure beats mets!
Love n hugs. Chrissy
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To all who are experiencing pain, especially the "newbies": I had extensive bone mets when I got my DX last June. Skull, ribs, sternum, spine, pelvis, tailbone and upper left arm. I was in a lot of pain from that, but until my DX I thought it was just arthritis or something. Wrong, my stage IIIA cancer that I had "beaten" in 2002-03 had come back. My onc. put me back on Arimidex that day last June, and Xgeva shots began last October. As of a few weeks ago when I had my third PET scan, I have nothing "lighting up" now. (Pardon me all, but Praise God!). Those two treatments helped a lot to control the pain (by regressing the cancer in all those lesions in my bones) BUT they are not the only reason for my pain lessening.
Last August when I complained of pain, a kind lady (I think on this site) suggested Fentanyl patches. I wear one 24/7, the dose is 25mcg. Since the Arimidex and Xegeva have now helped so much, I may step back down to the dose I first started on, 12.5 mcg. If not, at least now I don't have to go any higher. Many women are scared of Fentanyl thinking it's so strong you're a zombie. That's not been true in my case at all, but I had already taken Oxycodone sometimes for the worst pain, and that's key to starting Fentanyl. I am not incapacitated at all from them. I still drive, still work a full time job, still go home in the afternoons and work around the house, still do almost all of the things I love. I have even started back riding my bike! The patch hasn't affected anything but my pain, and that's in a good way. So if any of you are having debilitating pain, please ask your oncologist about the Fentanyl patches. They aren't the horrible things that some people lead you to believe. Many of the naysayers have never tried the patches, or tried them briefly and attributed everything bad that was happening to them to the patch. I trust my onc. and he would never have me on anything that would cause irreparable harm.
Think about using these patches ladies, at least for a while. Hugs!0 -
kiwicatmom,
Three cheers for arthritis! Funny, isn't it?
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thanks for your post wondering. I have extensive bone mets and I'm in pain although I am taking 30mg OxyContin twice a day plus oxycodone as a breakthrough. Your post is inspiring. I feel like a 90 year old but I'm only 37. I have 4 rounds of chemo left then my onc says ill go on tamoxifenI will be getting my 3rd xgeva shot on Monday. Does arimidex work the same as tamoxifen? . I too want my mets not to light up on a scan. Haha
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Garlikbread,
I am praying for you. And wondering if you are on ibuprofen, or neurontin. There are lots of pain meds out there, can use some along with the oxy. I do.
Anita
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Anita,
I'm not familiar with neurotin. I had tried some over the counters when I first started chemo and when my counts continued to remain low I mentally thought that I was doing more harm to my body and making my organs work overtime processing the meds. I'm sure that's stupid thinking! I'm just so afraid that my body will give out with all that's going on inside. Nevertheless the pain is making my quality of life not so great right now. Thanks for listening.
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Kiwicatmom: It really is funny, we are all giving high fives for your arthritis. I got arthritis from Femera. So glad it's not progression, I'll add my wa hoo's!
Terri
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KarenCanada - I live in Saskatchewan and my oncologist does either ct or Mri every few months just to make sure that the oral chemo - Xeloda that I am on is continuing to either kill or stabilize my bone mets in spine and pelvis!! I had radiation to my spine as well after a surgery on it in 2012!!
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Saskie I think the scanning schedule is more a personal thing with each doc and how insistent you are...............some scan often and others only on presentation of symptoms. It doesn't matter where in the world we are, all docs have their own ideas.
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Chrissy,
You are right about that. There seems to be no standard at all when it comes to scan frequency.
Caryn
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Wandering Spirit,
Thanks so much for your remarks re: Fentanyl patches. Thus far my regime works well for me, but I always wondered about the patches. This was really informative.
____________________________Folks,
With regard to scans writ large, my present MO relies solely on the written radiology reports. Last year when I was experiencing such debilitating pain in my lower back my pain specialist strongly urged me to discuss a consultation by a radiation oncologist urged in a way that said "You need to see one, but I'm treading a fine line." So I did. When in her office I saw the tumor is had taken over roughly 2/3 of my L4 vertebra! No wonder I was in such pain! Cripes, the thing should've been treated when it first started causing problems, but reading all of those reports you'd never know that it was so large.
The same thing happened today. Lower back pain, radiology reports refer consistently to this lesion in the sacrum, but they varied. None were alarmist. I had too much pain recently and the PET showed what was described as a new lesion. Long story short, I meet with an interventional radiologist and he shows me the area. My jaw hit the ground. It's about 3 cm and usurped pretty much the entire left side of the sacrum. Had I seen those things I would have been pushing for intervention at a much earlier stage. It is, I believe, unintended negligence.
How many of you have MOs that actually show you the images? Do you have an opportunity to see changes to areas? My first doc--a surgeon--always showed me any study I had, including the one that ultimately said I had metastasis. I got to see where it settled. That made a tremendous difference to me.
Anxious to hear your thoughts.
Scorchy0
