If you are not Stage IV but have questions, you may post here
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I saw a visable lump 6 months after a clear scan and asked for an ultrasound instead of an MRI. They did ULS biopsy right then & that started the 2nd round.
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Hi, all. I'm on day 6 of intense low back pain. It seemed to come out of nowhere. I woke up in the morning with it. The only thing I can think of that I might have done was pulling suitcases or sitting on lousy furniture because I was traveling. There really wasn't an incident, so I'm scared. It definitely feels muscular in nature. It seems to be getting worse. In addition to Advil, I added a Flexerel today. I hardly ever take any of that stuff, and it takes a lot for me to do so.
As you can see below, I was Stage IIIc. I have a regular onc appointment on Wednesday, 6/24. How hard should I push for a nuclear bone scan? It seems to me there's very little radiation risk in that, so why should he deny me that. I know I haven't been in pain for two weeks yet, but this is unusual for me, and I happen to be seeing him?
If this is not what bone mets pain is like, please kindly enlighten me and I'll be quite happy.
Thank you, and love and hugs to all of you!
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Hi Mary, I know pain that seems to come out of the blue is really worrisome but there are a load more reasons for back pain beside mets. The pain from mets can vary a lot from person to person so it's really hard to describe it precisely. When you see your onc do ask about a bone scan if the pain has not eased by then but he may suggest an MRI due to the possibility of other causes.
Good luck with it all and I do so hope it is something other than mets that is the cause of your discomfort. Please let us know.
Love n hugs. Chrissy
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Responding to tangandchris who asked if stage iv is ever diagnosed without symptoms. In my case, I thought I had no symptoms, but really I did and like dlb, chalked them up to other things. I had reflux that I attributed to family trait and tamoxifen, an intermittent ache below my sternum that I thought was a tummy ache, and occasional right flank pain that I thought was just ovulation pain. It turned out all these symptoms were caused by liver mets. So I'd say it is important to tell your onc everything, and to not let your doctors behave as if low risk of recurrence means no risk of recurrence. Nobody ever poked me in the liver area to ask if I had pain there. My blood tests for liver, etc. were normal, but if they had been checking tumor markers that would have shown the problem for sure, as TMs have been very accurate for me. Remember this is just one person's experience.
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Shetland Pony--I know that you didn't reply to me, but seeing your stats makes me want to push for the scanning. It looks like you and I were diagnosed about the same time with ILC, but I had a boatload of disease on board at that time. I hope he will honor my request/need and that I won't have to fly all over the U.S. to get the scan. But heck, it's summer and if I have to do so, so be it.
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Hi, Mary. I looked back at your earlier post. I'm sorry you are in pain and so worried. I had neck pain some time in 2012 I think, and my onc ordered a bone scan to put my mind at ease. It was just muscle pain and it got better. I think it is perfectly reasonable for you to get a scan so you can put your worry to rest. It's not standard, but some oncs will order a baseline bone scan even without symptoms. Why would you have to fly somewhere? Please let us know how it goes.
I see you are on letrozole. That is a good drug for ILC. I am on it now and maintaining the NEAD that taxol gave me.
I'm sorry my stats are scary! People reading this should know they are not typical.
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Hi everyone,
I have a new pain that just came on last week, it started in my underarm on my left side (where I had my tumour) but now it seems to be more of a side rib pain. I feel it whenever I lift my arms, lie down, breathe deeply, talk loudly, etc. I feel it when I stretch but it doesn't hurt worse (like a pulled muscle). Normally I would wait a few weeks to see my ONC but I happened to have an appointment so I told him about it and he ordered a chest X-ray (which I did) and a bone scan (in 4weeks). Should I be worried?
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p.s. This is the second this has happened to me. A few months back I also had a rib pain (different spot, closer to the centre of my chest) and after a bone scan I found out I had a fractured rib.
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Stephanie as long as your one is taking precautionary measures and getting you checked out I wouldn't worry overly much. It's always concerning when there is an unexplained pain that is continuing but in a lot of cases these are due entirely to other things not mets.
Due to radiation damage to muscles etc often these sorts of things are ongoing so being aware and vigilant is a good thing. Right now I would just wait for the results of your tests before hitting the really worried buzzer as stressing over a maybe tends to rob us of the joy of now.
Good luck with your scans!
Love n hugs. Chrissy
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Stephanie, are you familiar with truncal lymphedema, and has it been ruled out? If you're not familiar with it, you can search for threads about it here, but basically a swelling that comes and goes on the affected side (underarm, side, back)... can be exacerbated by things like heat, including hot baths & hot tubs... and at times can be very painful.
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dlb823 thank you that makes a lot of sense. I emailed my onc as soon as I read about that asking to be referred to a lymohedema clinic but he said he didn't see any swelling when he examined me so I should wait for bone scan results but my X-rays looked ok...
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Stephanie - I have truncal LE and you don't often see the swelling. A 'lucky' ultrasound showed it riding on top of radiation fibrosis. The self training & work with a PT that is experienced with both really made a difference. Mystery pains are mostly gone if i keep up the routine. Most docs don't give much credence to LE since they only get about 30 minutes of training in 8-10 years of schooling. So it's something to pursue if all the scans come out OK. FIngers crossed!!
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Onc agreed today to an MRI. He says that the pain seems to be coming from the sacral region. I'll be having the MRI on Friday night.
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Will be thinkng of you on Friday, Mary
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Goodluck Mary, I so hope the results are all good.
Love n hugs. Chrissy
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Hi!
I have a question about how easy/difficult it is to do a biopsy for bone mets. After I was diagnosed for IDC in July 2014, I got a PET scan to see whether my cancer had spread beyond the breast/lymph node area. Something lit up on my hip, but MO said that it wasn't necessarily a met. Then, I had five months of chemo and got another PET scan. It showed that the chemo had cleared out the cancer in the breast and the node that had tested positive prior to chemo. But, the PET scan also lit up something on my hip. Now that I've done surgery and rads, MO wants to do another PET scan to check out the hip area. If there is a met on my hip, could it be biopsied? How is that done?
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Hi Elaine. To answer your question, yes it can be biopsied but if it is in the hip joint this may well be a little more difficult. Usually a local is given and then the skin and flesh is pierced with a scalpel and an instrument is placed through the piercing and a small amount of the bone is removed. This then is sent to the path lab and you wait for results.
Some people say it is uncomfortable and others have said it is quite painful but if you have any real concerns on this side of things you can always ask for sedation.
Keeping my fingers crossed for you that what ever was there is now gone and there will be no need for a biopsy.
Love n hugs. Chrissy
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Just saying "HI" , Sugar Glitter Cheeks! Hello!
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Hi Tomboy!! How are you doing?
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I am pretty well! I might still hurt most everyday, but for now, i have an incredible amount of energy, I am getting back to my art, and that feels great. I am doing the deep cleaning of my house that I missed out on for the last five years, (I was really too too busy!) and just now thinking of looking for a part time job. i am treating my LE arm kinda like normal, and it is much stronger, and I met the "Lets post our daily exercise " thread ladies in San Diego a couple weeks ago, it was amazing! Life getting back to more normal for me, and i hope you are thriving too!
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Wow! You sound amazing!! 'Normal' is a wonderful thing to be.
I'm doing okay as well, busy taking care of my eldest DD and two grandsons at the moment but I'm enjoying it so it's all good.
Keeping my fingers crossed for you that you get the part time job you are looking for.........I guess the job market over there is pretty much like it is here, hard .........so really hoping that you can find something to your liking.
Yes I read that thread and pop in every now and then on the 'Lunch Bunch' ladies just to say hi and check on how everyone is. I just love seeing the pics of you all that are posted after just about every lunch.........you never know, I just may pop in for real one of these days.........lol.
Take care now and good luck with everything!
Love n hugs. Chrissy
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That would be so amazing if you came back! I would love to meet you!
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Thanks, chrissyb! Hopefully, it's not a met, but I'd be happy to know for sure.
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Hi all, I haven't been on this site for a while, everything has been going pretty smoothly. But I've started having some symptoms and have a drs appt next week but just thought I'd see if anyone else had something similar. Brief history dx May 2011 IDC stage 2 grade 3 chemo rad bilateral Sal Ooph in Jun 2013.
A few weeks ago I got abdominal pain (like period pain) and a bit of spotting. Only lasted a couple of days, thought I'd take the wait & see approach and it's back again. I shouldn't be bleeding if I've got no ovaries right? Any similar experiences?
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Hi Julie, you can spot as a consequence of taking either Tamoxifen or one of the AI's long term. The lining of your uterus can still build even though you don't have ovaries. I am really glad that you have an appointment to see your doc next week as this needs to be checked out ASAP.
Hoping it all is okay.
Love n hugs. Chrissy
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Julie,
I had spotting even though I'd had a total hysterectomy for endometrial cancer. It turned out to be bladder cancer, found early and easy to treat. Yours is more likely to be related to current treatment, but Chrissy is right - have it checked out ASAP!
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Thanks Chrissy & Carpe,
Pain was unbearable so got into doctor early and had ultrasound today. Radiologist suggested I see my GP tomorrow so I've got a morning appointment. Fingers crossed it's nothing too serious.
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sorry for your pain Julie but you did the right thing getting in early. Keeping my fingers crossed that it's nothing too serious.
Love n hugs. Chrissy
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I got my ultrasound results. There were no masses and the lining was ok but there were two areas that they weren't 100% happy with so I'm off to my gyno for a hysteroscopy next week. I'm pleased they are following it up further.
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Julie that is good that there are no masses and it's really good that your doc is following through to check out those iffy parts. Keeping my fingers crossed for you that all will be well and please do let me know the outcome.
Sending love n hugs. Chrissy
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