If you are not Stage IV but have questions, you may post here
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Well ladies, bone biopsy scheduled for Nov 15th. Now I just have to wait. Can anyone let me know how they felt after the biopsy so I can know how much help I might need that day and the next? Also, how quickly should I expect results?
Thank you again, especially to Ann and Moiralf for reaching out when I needed a shoulder to cry on.
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I had a bone biopsy on my sternum, no where close to the same tho, so I don't know if this will even be useful, but I had no pain or any after effects other than feeling like I had a big bruise in the middle of my chest. It didn't hurt unless I was messing with it or leaned on it and even that was gone in a few days.
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Hi Swimmom3,
My bone biopsy was on my L3 or 5 can't remember. Had some type of anesthetic and felt nothing as they did it. Sounds like I'm very confused but it was 5 years ago and in the midst of other tests so memory is a bit blurry. I know I didn't have any problems afterwards though and had no need of extra help or any more time off work. A bit of tenderness around the spot was about all.
The waiting to have it done and for the results are the hardest bit. Can't help with the time for results as that is dependent on where you are getting it done.
Hang in there and do whatever feels right to help you get though the wait. Stay positive and don't let those bad, bad fears get a hold.
Moira.
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Hi all,
A close friend of mine was recently diagnosed with a second breast cancer, 4 years after DCIS with microinvasion and ITCs in her sentinel node. This time it's stage III, I think IIIa. She had a UMX and discovered that the supposed 1.5 cm tumour of IDC in her breast was in fact two huge masses -- IDC and DCIS -- that basically took up her entire breast. She's now planning to have the other breast removed, since these large tumours were not discovered despite regular surveillance with mammo, U/S, AND MRI. She's struggling with whether she should have the other breast removed now, before starting chemo, rather than waiting until her active treatments are completed. She's very concerned that her remaining breast also has cancer.
Since the cancer has spread to her lymph nodes, she'll be having a couple of scans for distant mets prior to starting chemo. If you were in her shoes, would you wait for the scan results before deciding whether, or when, to have another UMX? In other words, if she is found to have MBC, would it still make sense to have a prophylactic MX? Or what if cancer were known to be in her remaining breast? Do you stil treat the breast separately when you have MBC?
Many thanks for your help!
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Thanks for your information about a bone biopsy. I'm nervous to say the least, but my doctor said I would receive twilight sedation and shouldn't remember much. Then he told me I would need to "take it easy" for about 24 hours or so. Glad I'll have a few days to heal before Thanksgiving. I hate that this will be hanging over our heads, but I don't want this to spoil the time with my family no matter what the result. Many thanks to all for your kind words and support.
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I have read some posts by women who had no symptoms of bone mets and their blood work was also fine. I am concerned about some achiness and burning feeling in my lower back. It is pretty much constant for the last 8 or 9 days. It feels stiff when I try to stretch out. I am obviously worried about mets. Just had a 3 month checkup in October and blood work was fine. I don't see onc until January and hate to call and have to get an xray or do more blood work which may show nothing anyway. For anyone who has had mets to bone, did you have any pain or discomfort? I wonder if the achiness is the tamoxifen? I had a bone scan twice this year last one way in May and was clean but....
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Hi Cheryl, I have answered you on the thread you started with the same question.
Live n hugs. Chrissy0 -
Does anyone know if there is a thread for women with multiple local recurrences? Just had a "button" removed with wide excision on Oct. 8 (recurrence but clear margins), now my MO found 2 more tiny tiny hard lesions (maybe suture?????) and wants me to see BS again in a couple of weeks for another punch biopsy. I am growing very weary of this.... grateful it is not yet beyond the local/regional stage, but honestly, there is less and less skin and tissue to remove here.... and I am getting really tired of having to see the docs once or twice a week along with physical therapy twice a week - each of which takes a minimum of 3-4 hours with travel time and clinic time. And today she said I have hypercalcemia so have to have labs repeated in a couple of weeks, and wondering what next????? I thought hypercalcemia went along with bone mets, but she says no, other things can also cause it, and I need to drink lots of water. I am already doing that, am thirsty all the time, peeing every hour.... she wants to put me on Faslodex even though I am not stage IV to see if the local recurrences can be managed with that. I will amble over to the Faslodex Girls to read, but if anyone has any positive experiences with it, I would LOVE to hear from you. (I don't need to hear the negatives right now - have been able to come up with those all by myself and have terrified myself enough to reject the idea right now, but realize options are few right now). Thanks for being here! And best wishes to those going through biopsies this week.
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I'm just jumping back in with a bit more scanxiety. Alkaline phosphatase levels were high at my last MO follow-up. Bone scan was fine, but had a liver US this morning and am starting to freak out while waiting for results tomorrow. I saw the comment about not trying to read the scans, so I'm not obssessing over the weird looking spots I thought I saw. But part of me wants to throw up. I do appreciate everyone's stories of long-term survivors. I need to keep remembering that if it is mets, I don't necessarily have to start planning my funeral. I am so glad I have a place to go to talk frankly about all this.
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Linda so sorry you are going through all this. I don't have any experience with localised recurrence but I can relate to the stress that you are feeling. It's worrying when we don't have definitive answers but here's hoping you will get some soon.
Rachel it's always hard when we think we know what's on a scan but it is so much better for our psych to just have patience. We get answers sometimes sooner than we want. You are right when you say that even if it is mets there is every possibility that you will be around for a long time to come. Take a deep breath and try not to think on the negative.
Love n hugs to both if you. Chrissy0 -
Thanks, Chrissy.
Linda - Sorry to hear you're dealing with recurrences. It does seem like there is no end to the stuff we have to deal with. Hang in there.
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Clean scan. I'm breathing again. The social worker at my cancer center got back to me with the name of a nearby counselor who has experience in working with BC survivors. I think I could use a little help in coping. Yes, I'm a 'strong woman,' but this is something that I've never had to face down before, and I'd like a little help in managing my fears and reality.
Thanks, as always, for the support.
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Rachelvk, So glad your scans were good. I finished chemo in Feb & had my last herceptin last week, but have had a much harder time coping with the post treatment emotional recovery than I did with all the physical stuff (bad as it was). I started seeing a therapist in April, and she has helped me so much. I'm still dealin with it, and expect to for a long time, maybe forever, but just talking through it all with her has helped. I think you & I live in the same area so if you ever want a recommendation for a wonderful therapist, just PM me.
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Appreciate any responses as I have two questions.
1) Skin mets - what do they look like? Have developed a slightly smaller than dime sized raised red welt.....
2) If one has local recurrence such as skin mets, does this change staging?
Hope I am not intruding and really appreciate any words of wisdom as I usually need all the help I can get
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I get to see a dermatologist this week for a raised sore. Hoping it is not mets. I also get a PET and a CT. I'll let you know the results. Mine is now about the size of a mangled silver dollar (not round).
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I have always struggled with my weight. I have lost and gained a lot of pounds over my years. I know my weight contributes to the possibility that I may get another recurrence and it was probably the reason that I got my first recurrence. But I am terrified of losing weight (weird, huh?) because I have never been able to keep the weight off. And every time I gain it back I do so and then some. I cannot be bigger than I am now. So I work to maintain this weight instead. I would love to lose the weight but cannot entertain the thought of putting it and more back on.
Anyway, my question for those who are Stage IV......did you put on weight after you were diagnosed? Did you lose? What was your experience with weight and being Stage IV?
Thanks for answering all these questions. You ladies are the BOMB! BTW, never say that to a flight attendant. It will surely get you thrown off the plane! Or almost.....whew?
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I gained 18lbs over 3 months time due to the anti hormonals. 18 lbs I surely didn't need. Then a subsequent treatment choice made me so sick I lost that and then some. Recently I have stabilized back to my normal (over) weight and am holding.
The treatments can reek havoc with your digestion and weight, up and down.
I've been told not to concentrate on weight loss at this point, just try to eat healthier and keep moving when I can.0 -
Anyway, my question for those who are Stage IV......did you put on weight after you were diagnosed? Yes. Food is comfort and I needed a lot of comforting. LOL. About 30 pounds worth.
Did you lose? Yes. During my last chemo (Ixempra), I lost 30 pounds. I wanted to keep it off so I started swimming, an hour a day in the lap pool.
What was your experience with weight and being Stage IV? Right up front, all my team (medical) said to not worry about weight. Exercise is good. Of course, with the neuropathy I could not walk/run/zumba etc. So I tried swimming. It is working. I still eat my comfort food (ice cream), and refuse to deny myself the joys of living, which translates to eating what I want and not eating what I don't want. The swimming has kept my weight stable and given me more energy.0 -
I too gained weight during initial treatment, mainly over eating and inactivity. A little help from steroids.
The year after I got back on my bike and worked to get healthy, didn't lose weight but was toned and reasonably fit for a largish old bird.
Then I fell off my bike, broke a shoulder, out of action for months. Stage 4 diagnosis happened while still disabled so the weight just went back on plus more. Treatment SEs took away walking and riding but I love swimming so off I went again. From January this year to May, I ate very healthy and calorie controlled food, swam a lot and lost 18kg (lb?) Got back into ALL my per-cancer clothes, felt fantastic.
Then in May, another tumour, surgery, radiation, chemo SEs mean I cannot move much due to breathing difficulties. I am determined to keep as much of this weight off as possible, whilst still staying strong and fighting my main enemy and here's why...
When cancer came back in May, I felt hopeless, lost and like I had no control over anything. The fact that I could wear anything in my wardrobe and look ok gave me great positive energy and a big smile. I don't want to lose that feeling. I am on steroids again and I am inactive, but I am trying to eat as much healthy food and avoid the junk as much as possible.
Look, when we are battling this bugger, it really seems stupid to worry about our weight and how we look, and of course my number one priority is to be here for my family as long as possible, but I also want to live a happy life; not be depressed in my final years. For me to be able to dress reasonably and not feel unattractive makes me feel stronger and happier. I will do what I must to fight cancer and I will do what I can to stay healthy and within a weight range that suits me.
Love to all
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Hi Odie, I do not have skin mets but I have looked them up as at one time I was having the same question run through my head. I googled (yes I know, not usually recommended) and found some pictures of mets to compare but it really didnt answer the question properly for me. The only way to do that is show the lession that is worrying you to your doc and if he thinks it may be skin mets, I'm sure he will take a small biopsy for confirmation. As to the stage change, my understanding is that anything outside the breast area is concidered stage IV but that also would need to be confirmed by your doc. I do so hope that all is clear for you.
Skutters I'm hoping that your scans are clear and your lession a patch of dermatitis, (((((hugs)))). Yes please, do let us know the outcome.
Wrsmith, yes, I put on a lot of weight due to taking first Arimidex and now Femara but I am happy to say that I changed the way I eat and have successfully lost 10kg and kept it off! I'm aiming for the next 10kgs now and hopefully I will be as successful. If you want to know what I did just PM me and I'll write it out for you but the biggest thing I do is I eat every two to three hours.......no longer between meals, and the meals are all gluten free and loaded with veg and protien. Because I eat so often the quantities are small but I never feel hungry. This last one was soooo important as I have always been a big eater........until now.
Love n hugs all! Chrissy
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weight gain, such a awful topic!!! I was actually losing weight prior to my dx, don't believe it was from the cancer but more so that I started walking daily and was up to several miles with my two dogs each night after work. I continued to slowly drop weight for about 6 months. After that, once they put me on tamoxifen it was a continous weight gain until I went off the AI's. I have lost over 60 pounds this past year on chemo, right now I am on afinitor/aromasin and I have had the most dramatic weightloss on this combo. So much so that my onc is getting concerned. I'm ok with it because I am finally out of plus sizes and starting to feel like a normal person again!!!
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I lost weight during chemo for my initial dx of bc, but put some back on when treatment was done. My onc was concerned that I was still underweight, though, but it's what I had weighed for years so I knew it was normal for me. Then, Tamoxifen really killed my appetite and I lost weight again and really struggled to keep my weight up. When I was put on Arimidex for mets, my appetite improved but my weight stayed the same even though Arimidex really gave me a belly. Then, Faslodex didn't make much difference, but Megace - look out. It definitely increased my appetite and I put on at least 10 lbs which thrilled my onc to no end. The weight stayed on for awhile even after I was switched to Xeloda, but once I managed to get the Xeloda bloating under control, I lost a few pounds. So, I got bc even though I was "underweight" and had a recurrence as well. I find it interesting that all the women in my support group who have had a recurrence are thin as well. As some others have said, we're all individuals with our own genetics that determines what diseases we get and why. Since the horse has already fled the barn, I figure it's too late to worry about what might have opened the barn door.
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I've been a yo-yo with my weight since I was a pre-teen (I'm 45 now). I am tall (5' 11") and can carry it reasonably well. When dx'd, I was at my all time high of 204. As I said, I yo-yo and this wasn't the first time I went over 200. My lowest weight was 140 about 7 years ago. I was too thin, felt weak and would get dizzy standing up (well...that still happens sometimes being anemic). I looked fantastic on the outside, but only felt that way standing in front of a mirror. Otherwise, I felt icky inside.
I think my "ideal" weight is 160-165. Right now, I am 182 so I am down 22 lbs. from my dx weight. It is because I am eating healthier and exercise, not because of treatment. I just joined my hubs gym. Now I have to live at least 3 years (the length of my "buy two years got one free" membership) since I am not going to lose my money...hee! I try to go 3-4 times a week and I use the treadmill.0 -
Thank you for the opportunity to ask my question in this forum. Concerning bone mets - is there any tendency for a metastasis to go to an OLD fracture site? I had a stress fracture in my left femur about seven years ago from running (had plantar fascitis at the time and was unconciously turning my foot out to avoid the painful spot, thus torquing the femur...and...crack).
I'm a little over one year out from stage IC IDC. Was HER2+ on biopsy, but onc retested it TWICE because it didn't "fit the rest of my picture" and it came back negative both times. We even discussed at my most recent appointment that maybe the biopsy got the one bit that was HER2+. Mentally, I packed up all the worry and stowed it away in long term storage. I'm not a worrier/anxious at all, so once treatment was over, I was done and ready to get back to life.
Recently, however, the left femur has started to hurt. I remember the bone pain when it was broken - not an easy thing to forget - and this is bone pain. SO different from muscle pain/strain. Not nearly as bad as then, but pain. I am active - I run, cycle, and teach an aerobics class - but nothing to excess. Maybe it is my 50 yo body telling me that I'm not as young as I used to be, but now I have to wonder if something else is going on.
So, long question short, would an old fracture have a higher risk of mets, being a so-called "weak" spot?
Again, thank you for your thoughts.
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Madpeacock - not sure if mets have tendency to grow in old fracture sites, but maybe you have some arthritis in that area. I think osteoarthritis can develop in areas that have been injured.
Annie
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madpeacock- i havent heard of fractures being more susceptible to cancer, but i would def get any pain checked out. More than likely it is one of the many other things that cause bone pain, but better safe than sorry!
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Hi sweet ladies -
I just wanted to know when I get to post in the METS board. Long story short I've had a Chest CT and PET scan that showed multiple lesions in my lungs and in my chest wall. After a lymph node and lung CT-guided biopsy that were both inconclusive, and a second opinion, both doctors are positive that it's mets.
I'm meeting with the lung biopsy surgeon on Monday, they want me to get the biopsy done ASAP. The lung resection will most likely confirm what my doctors are saying. Sure, there's a tiny glimmer of hope that it "could" be something else, but the reality is that it's not likely.
Both doctors said that the lesions are foci and because of number of them and location inside AND outside my lung, there's just not much hope that it's anything other than mets.
I got my second opinion today so I'm in the middle of just absorbing that news and preparing to meet the lung surgeon. I'm kind of numb right now but I know the emotions are going to hit me hard very soon.
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Hi Shelmel I'm so sorry you have had this dx but welcome to the stage IV boards. Post when ever you like.
Love n hugs. Chrissy0 -
Thanks Chrissy. Right now I'm just reading, and praying for all of you wonderfully amazing women.
xoox0 -
So sorry ShelMel. Of course you are welcome. Of course you probably already know that you will find caring and comfort and understanding and information here. And it is also a great place to rant when the need arises. Here's to your team coming up with a plan, getting the plan in play, and most important having the plan work!
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