If you are not Stage IV but have questions, you may post here
Comments
-
An ultrasound can show cancer spread. Link below for more details.
0 -
Hi All, I'm totally freaked out and don't know where to turn... I found out yesterday - that I have "radiation recall". Its where you develop all the same symptoms from radiation (redness, swelling, pain) - months (or sometimes longer) AFTER you've completed radiation.
The RO said: If it isn't cleared up by April 17th - he wants me to off the anti-estrogen pills - for 2 weeks - to see if that clears it up.
Because, he strongly suspects this is due to my anti-estrogen medication. (I'm on Arimidex). And, would then have me take a different anti-estrogen medication. What FREAKS me out is: what if EVERY anti-estrogen pill does this and I can't take them????? I feel like this is my only REAL protection from Stage 4 and I am VERY high risk. And, if I go to Stage 4 - then I wouldn't be able to take this med? WTF.
I am beside myself with sadness....
0 -
Scared, I'm so sorry you're dealing with radiation recall. I don't really know anything about that particular phenomenon, but if it is possibly due to or exacerbated by Arimidex, it could also be only related to the specific Arimidex you're taking, that isn't in other aromatase inhibitors, or isn't in certain versions of them, as they are all made in several generic versions, as well as the brand name. If it was simply due to a lack of estrogen, it just seems that it would be a much more common issue than it is. Besides -- and I say this with the utmost respect for docs -- blaming the RR on a med, rather than something connected to RT, sort of sounds like what specialists do. In other words, this adverse event has nothing to do with his or her tx, but rather an outside influence.
But I also wanted to address your fear of Stage IV. Yes, you are at a higher risk than someone who was originally Stage I, for example, but there are many women who were dx'd at Stage IIIC who are many, many years out without a recurrence. I realize you are only a few months past your active tx, and hopefully this fear (which we all had) will lessen as more time goes by, because, in truth, there is very little rhyme or reason (at least not yet understood) as to why some of us recur and some don't. Please try not to stress over the current complication, as stress can actually be worse for us than anything else that's going on. Get the RR under control, and then try another A/I, if you and your RO feel Arimidex is implicated. Hugs, and hang in there. I know it must be very frustrating to feel like you are finally done with tx, only to have something like this pop up. I hope it goes away as quickly as it appeared.
0 -
Thanks Deanna - your kind words help so much...its so hard to deal with this. Because it was almost one year - to this day - that I heard the news that I have "cancer". This whole thing makes me feel like this is "Part 2" of what happened to me last year. I know that probably doesn't make much sense...but I just feel that way...
0 -
Scared, I wanted to read up on RR, and found a several research articles that seem to point to chemo drugs, especially taxanes, as being more a suspect cause than an A/I...
http://theoncologist.alphamedpress.org/content/15/...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32279...
0 -
Scared, your feelings are understandable. Please, if you dont have a perscription for anti anxiety meds, please consult your doctor. I had severe anxiety after my chemo was completed. Could not even get off the sofa for days. Had such a jumble of emotions it took me awhile to figure out what I was feeling was anxiety, the doctor had been perscribing antidepressants which made my anxiety worse. When I discussed the anxiety with the doctor, I was given a perscription for buspar, a non habit forming med that literally gave me my life back once I started taking it.
In addition, I have learned to live more in the here and now. What you are doing is catastrophizing what "might" happen. I have been guilty of doing that, too. But I learned to just live today, and then do that again tomorrow. Sometimes my thoughts try to run off with the fear factor, and the antianxiety meds help because I know now to distract myself with something right now, and the anxiety most often will go into the background. It was a process to get myself to do this, but worth it.
Yes, I think of bc every day, but the thoughts don't control me in a negative way. Please, try to take this one step at a time and deal with what is in front of you now and not some far off future that might not even happen. Best wishes to you.
0 -
Deanna - Thanks for looking up and posting the research articles on how the taxanes, are more likely to be the cause of radiation recall than an A/Is...very interesting! My MO was saying that - also - when I saw her on Thursday... (she actually doesn't think its radiation recall)...
DivineMrs.M - I can totally relate to what you're saying about anxiety...it is so paralyzing... I'm glad Buspar has worked so well for you!!! I tried it when I was first dx'd last year and I think I might have been on too high of a dose because it caused dizziness. I think I'm going to ask for it again - to see if a lower dose might work. I have leftover Ativan - but - have been trying to *save* it for upcoming scans (as my MO wants me to have these routinely done for the next 5 years)...
Anyhow- as I was telling Deanna - my MO doesn't think its radiation recall and wants me to have an ultrasound on the area. Its scheduled for 4/11. (She thinks I might have done something involving my right expander). I remember yanking hard on my back-pack about a month ago and feeling like I hurt something in that area.
I'm having a very hard time though - as this whole experience with BC started on exactly 4/13/16 (after a breast ultrasound). So - having an ultrasound scheduled for 4/11 - is really making it hard for me to function.
I know they say Xanax is addicting...but I feel anyone whose had or has BC should have a lifetime supply of it! Living like this - in a world of unknown and anxiety is not really living...
.0 -
Scared, interesting that your onc doesn't think it's RR. That had also crossed my mind -- not the potential of an expander issue, but possibly truncal lymphedema, which the pain & swelling fit, but not the redness.
This sounds like a case of hoping you have the lesser of two evils -- something not at all unusual when we're dealing with bc. Most of the time it's arthritis vs. mets, but your situation might be similar -- assuming an expander issue (inflammation? infection?) is a quick fix with antibiotics. Interesting that your rad onc was quick to think it was RR...
0 -
Hi Deanna...yeah...I'm thinking it might actually be truncal lymphedema...I never heard of it being truncal but I just googled it and think that's what it might be based on how I feel and the swelling. I'm not sure why my MO didn't say anything about it being a possibility...
0 -
Hi. I am hoping someone can give me insight on whether to push for some additional testing re: symptoms I've been having, as well as what type of testing I should push for. I am almost 5 years out from initial diagnosis of stage 1 IDC. About 2 months ago I began waking several times a night with tingly fingers (I am a back sleeper, so it was not from laying on my arm). In the past week, after doing some yard work, I have begun having very bad back pain, at times 8 or 9 on a 10-pain scale. It's mostly mid-back and neck, but I'm also getting strong aches in my lower back and hips. It ebbs and flows, and it's varied in behavior--sometimes achey like childhood growing pains, sometimes more muscular, sometimes sharp stabbing pains. Also in the past week, I've begun having nausea. I've had my calcium tested recently (albeit a few days before the nausea started), and it was normal. I had similar symptoms almost exactly a year ago, and my MO ordered a liver CT and brain MRI (she was more concerned about the unexplained nausea, and also some muscle twitching I was experiencing at the time), but nothing to check bone health. Both brain and liver came back fine. Shortly after those scans, I was diagnosed with Lyme disease -- which in hindsight probably explained a lot of the pain and nausea and muscle twitching symptoms I'd been having. After Lyme treatment, I felt great for a good stretch--until this past week when the pain and nausea started up. I am assuming it is a Lyme flare-up, but could bone mets present this way as well? Could the pain go away for a year and then flare back up? Or would untreated mets not be quiet that long? what about elevated calcium levels causing nausea with bone mets....could that ebb and flow as well, or would it stay permanently elevated? The other piece that has me concerned is my mental health. I have a history of anxiety and depression, but it rarely gets severe. About a week ago, I spiraled into such a bad state my husband ended up taking me to the ER; the last time I was like this was just months before my initial cancer diagnosis. I know it's unlikely to be related, but I've also done some reading on how tumors can affect brain chemicals/mental health, and it has me wondering. The similarities between last week's emotional episode and the episode I had months before my initial cancer dx have me concerned. I see my MO next week for my yearly checkup. Should I request a spine MRI? PET/CT? I'm concerned about sensitivity of bone scans/inaccuracies for lytic lesions, so am wondering if I should ask for additional testing and what kind. I've also been having A LOT of gynecological symptoms (although a recent TVU came back fine), so I'm wondering if maybe asking for a PET/CT is a wise option, so as to get a better look at multiple fronts. Thank you for any insights.
0 -
Adelaide - Sorry for all you're going through. I can't answer your questions, but I think it will help the others to know your age. I believe you're in your mid 30's?
0 -
Adelaide, I'm so sorry you're having back pain, nausea and a lot of anxiety not knowing what is causing them, and if any of your symptoms could be related to metastatic bc. So for what it's worth, here's my take on your situation. The fact that you have had Lyme disease in addition to bc, I believe makes your situation one that really requires input from and communication between more than one specialist -- ideally doctors who have dealt with patients with similar histories, which would probably mean a major medical center, where they can thoughtfully unravel your current symptoms and will be sure not to miss anything.
As far as tests to rule out a metastatic recurrence, I would think a concerned onc would do complete blood work, including a CA27-29 (tumor marker test; not always 100% reliable, but certainly could be an indicator if anything is going on) and also liver function tests -- another potential early indicator if something is going on in your bones, although I don't know (and this is why I think you need specialists who can work together) how Lyme might affect the latter or any other blood work. A PET is the scan most commonly used to dx mbc. If your insurance company will authorize a PET/CT, all the better -- and one more reason for coordination, so that you get any necessary tests for all possible concerns covered at the same time.
A few other miscellaneous thoughts... (1) Back pain -- including both aching and severe, shooting pain -- after gardening is very common, especially if you're not used to bending and squatting; (2) It sounds like your scanning was area specific. I would not be the least bit shy about asking for a full PET Scan now, if only for the peace of mind it sounds like you need. (3) Stop Googling. And I mean this in a very kind way. Google is wonderful when we have a diagnosis to then educate ourselves, but it's absolutely horrible when it comes to self diagnosis.
Hope this helps. Please keep us posted. Hugs, Deanna
0 -
What Deanna says makes sense. I will add that if you can't get a PET/CT, the next best choice would probably be bone scan plus CT with contrast. This is what my oncology nurse practitioner told me about scans.
0 -
Here is my question:
For those of you who were in the middle of reconstruction when you got a stage IV diagnosis did insurance still pay for you to complete the rest of the reconstruction or deny it?
0 -
9lives, I'm not an expert on insurance, but I've never heard of an insurance company denying reconstruction that's in process -- or at any other point, for that matter, although starting it with a Stage IV dx might not be wise if it delays treatment because you might have to wait for the surgery to heal before taking any meds that would delay healing. But a flat out denial because of a Stage IV dx is ridiculous, and if it happened, I can't imagine it would not get reversed on appeal. Thankfully, these days, many women live a long time with mbc, so it should have no bearing at all on recon, other than the timing issue.
0 -
MinusTwo, Deanna, & ShetlandPony, thank you all so much for your insightful responses. I will try to stay away from Dr. Google. :-P Yes, I agree...he does often cause unnecessary worry and fear. I appreciate the suggestions on the best imaging for my situation; I've taken notes to share with my MO at next week's appointment. Again, thank you so much for taking time to respond to my questions! It's been a great help. Best to you all.
0 -
Adelaide, thanks for checking back in. How is the back pain today? Please keep us posted on your MO appointment. Deanna
0 -
Thank you, Deanna. Pain was pretty bad today; moving seems to help, so I went to the gym and did a gentle workout on the elliptical and felt good for about an hour afterwards, but feeling lots of tightness again now. I will try to check back in after my MO appointment next week. Thank you so much. :-)
0 -
Deanna thank you. That is reassuring :-)
Shetland pony--
0 -
Hello and thanks for taking a minute to read my post. I also have questions about pain in my back. I have had on and off pain for several months in the middle of my back. It has mostly felt like a throbbing or stabing pain....but like I said it comes and goes. Until recently. The last week the pain hits and stays, to a point of almost being constant. My 7 year old pressed against my back and that is what set this off.
I know this could be nothing, but still I'm starting to worry. My situation is more complicated because I lost my insurance in February. Idk, Im not even sure of my question. Just worried...thx
0 -
Are you worried about it being bone mets possibly? Pain that does last more than two weeks or is not relieved with pain relievers should have a scan to rule out mets BUT there are also so many conditions that can cause back pain. The only way to know for sure is to get it checked out.
I did read that you have no insurance though so I know this is MUCH easier said than done. I hope it is something that goes away or has a benign explanation. Hugs going your way.
0 -
Just saw your other post. Do you still have the option to sign up for COBRA? When my husband was fired last fall, I was hysterical. I thought it would be the end of me. COBRA is more expensive but they gave us I believe a few months to sign up (we signed up right away though) and let us do some creative calculating i.e. two single plans instead of a family plan. We wanted to cover him because we know all too well that being young and healthy is no guarantee but could've just covered me too.
If not, what about Medicaid? Even with the current politic situation, I doubt rollbacks with expansion will be happening anytime soon
0 -
The window for COBRA has closed and as far as I can tell Medicaid is not an option unless I have active cancer treatment going on. I have worked out a plan with my MO to get a discount on my scheduled visit in June. That covers blood work and office visit....about $200. They will allow me to pay it out, still alot of money. I think I am going to give this pain another week and then call if no improvement. I'm not really able to do much else and honestly if I dwell too long I wont be able to function. Not having insurance is not a good place.
0 -
Trying not to get paranoid here, but in addition to my lower abdominal on and off discomfort most likely Tamoxifen being the culprit on my uterine fibroids, I have more often pain on my bone far right side, like top part of my hip? I'm doing a pelvic ultrasound on 5/1 and pcp will give results then for the on and off lower abdominal pain, but should I demand a bone scan? It's been going on for weeks and seems to be getting a bit worse. Worried bone met.
0 -
Hi Artista, the fibroids can cause pain and pain can be referred but if that hip pain is getting worse it's always better to get it checked out .........even if it's just to put your mind at ease.
Good luck with your ultra sound.
Love n hugs. Chrissy
0 -
Thanks Chrissyb! Is bone scan the only way? Or would a pelvic u/s show the pelvic bone too and if there's met? Of course after quite a time last night, it feels fine now. Does it have to be pretty frequent pain? thanks!
0 -
Hello warriors....I have a question for myself about my friend, who's cancer has come back, and I need to know how to best support her, as she has been asking for my support for holistic medicine, my opinion as I told her is that it has it's place for sure, but I don't think one should replace the other. But I also am not dealing with cancer for the second time (knock on wood)....She was diagnosed about a year after me, with identical cancer, one big exception being she found her lump later than I did, so it had spread. She had a recurrence in her bones not quite a year later, and now it is in her lungs and she had a few spots on her brain. She is going through chemo, and had a very invasive, and brutal surgery on her lungs, which helped, but she's getting fluid in them again. She is convinced it's sugar, and meat that caused this, so she is eating a very strict vegan diet.
My question is, is there anyone with a success story about holistic treatment? She is losing a lot of weight largely due to her diet, her doctor wants her to eat meat, but she will not budge on this point. She has had a lot of people criticize her for these choices and although I do believe she does believe in it, I also know it's the one thing she can control in an uncontrollable situation.
The chemo has seemed to help, her spots on her bones have cleared up and she said that her brain spots are getting better?
I am worried about my wonderful friend, and trying to help her husband with his questions and her very scared mother and small children. The one thing I have been able to be definitive about is that she and her husband need to decide what is best for her, this is not my decision, but I have been through treatment myself, but nothing compared to what she has been facing.
Thank you and hugs to you all!!
0 -
Artista, the most common diagnostic imaging to look for possible bone mets is a PETScan. A bone scan is normally used to ascertain the level of activity when bone mets are known and being treated -- in other words, is the current drug regimen helping.
kytylove, I'm so sorry about your friend's re-dx. I happen to be extremely holistic minded, but barring a complete change of lifestyle with a miracle thrown in, I don't believe anything holistic will cure cancer. OTOH, I totally believe in all sorts of modalities from Eastern medicine to complement our tx. Your friend may want to find a highly qualified integrative oncologist who truly understands the limitations and trade-offs of both Western and Eastern medicine. Here's a link she may find helpful: https://integrativeonc.org/
As far as diet goes, forcing yourself to eat red meat if you are adverse to it for any reason makes no sense to me. If she's anemic, it's probably not due to iron deficiency, but to her tx. If she needs calories, there are plenty of healthy non-animal products, such as avocado and nut butters. I'm not a nutritionist, but my layman's opinion is that a mostly vegetarian diet is healthier than a meat-laden one for many people.
Glad to know her chemo is working! And yes, even spots on the brain can clear up. Deanna
0 -
Artista, a simple xray will show anomolies but then would need to be followed by a PET for definition with a bone scan after that.
Sometimes we are so worried over the possible return that we almost convince ourselves that it has happenned. Keep a check on the pain and just wait and see what your ultra sounds says before heading into high cost scans.
Good luck.
Love n hugs. Chrissy
0 -
Thank you Chrissyb. Thank your for having this thread for us and helping us. You are a Godsend.
love and hugs back to you! xxx0
