If you are not Stage IV but have questions, you may post here
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Momto3: I know it's extra radiation, but I swear by the PET/CT. Cancer cells light up & spark on the films. My MO believes in them also so I had two last year - before final diagnosis of recurrence and between 1st chemo and surgery. See what your doc thinks.
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Momto3: I had a PET/CT this week too. It's not a difficult test and it gives them information that they wouldn't get otherwise. Might be something to ask your oncologist about.
Soriya: I would ask for a referral to a rheumatologist. I've seen one fairly regularly since I started taking the hormone blocker type drugs because my arthritis went from mild to kick-butt almost overnight.
All of these doctors have blinders on though, and that's something to remember. Oncologists see cancer, rheumatologists see arthritis, GPs think you're just depressed...I think it's up to us to put all the pieces together and push for definitive answers.
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Hello everyone. I've been avoiding posting here/asking questions because I've been living in the town of Denial these past several weeks. As soon as I finished radiation mid-late January, I started on Xeloda as a precautionary drug (long story) but also because I'm TNBC and had sneaky positive nodes that were found two months after my surgery. After the first week I had this crazy localized back pain that went away after about 4-5 days. I went and saw a chiropractor which seemed to help. I did yoga stretches, also helped. Then it moved around. It has not been consistent but has gone from middle back to low back, and so on. Currently my chief complaint is stiffness. In my back, hips - and worse after I've slept through the night. I am constantly "on high alert" so I think I am probably making it worse by being afraid of certain movement. If I slip or trip, I seize up immediately for fear of hurting myself, which as you can imagine just makes it worse. I use a heating pad and take ibuprofen which helps, but obviously the thought has been on my mind that it is bone mets. And honestly at this point I feel that if it isn't, I will be so shocked that I will probably go skydiving naked or jump in a river and scream with joy. Those things are unrelated but you get the idea.
Anyway - I've read so many posts about post-treatment effects, drug side-effects, radiation affecting your back, etc... and I could be lumped into any of those categories, really. I have an appointment with my onc next Wednesday - my last appointment in late Feb went fine, he seemed unconcerned about my pain, probably because at that point it was new. When I mentioned to the nurse practitioner that it could be the Xeloda, she brushed it off, even though back pain/stiffness is listed as a side-effect!! Anyway, I assume my blood counts were fine because I got no call about that either. I know that I need to ask for a bone scan - which I swear I will do - I guess I'm just asking if anyone wants to talk me off the ledge? I'm only 31. This blows.
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Flimsical in amoungst your post you really have answered your own question but I will say 'Get off that ledge NOW!' .........lol.
I understand your fears and I can't say I blame you but right now you are your own worst enemy as you are causing yourself so much stress which really doesn't help your situation. To ease your mind I would ask your onc about a bone scan 'just to make sure' but I think you will find most of the pain is caused by the amount of tension and stress you are putting yourself under and a SE from the Xeloda (regardless what the NP says, they never do want to acknowledge SE's).
Have you tried a massage to help relax your muscles and your mind? You may find yourself feeling a whole lot better. You may find other ways of trying to relax that will also help.
Love n hugs. Chrissy
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Chrissy ... Simply, thank you. You are a gift. :-)
Also, scheduled a massage. Gonna give it a try.
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flimsical, you were on some pretty toxic chemos (Adriamycin AND taxotere -- woah). I think they really do a number to your system. Now I am a lot older than you (48), so for me to have arthritis is different than you to at 31, but I will say that I seriously feel so much older now than I did a couple of years ago -- everything seems really creaky and painful. And I am someone who has exercised regularly for decades (swimming, which is low impact). I feel like an old woman sometimes (I know 48 probably sounds old to you but it won't when you get there!). I have no idea about xeloda, but a lot of times we notice SEs that aren't on the list.
So probably a good idea to get a scan of some sort b/c you are so young and were TN and are having these symptoms, but I think it is probably from the drugs.
Grumpy! so true-
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flimiscal,
Sorry you got the horrific "beast" so young. Not fair.....I do not think the MOs take our pain as seriously as they should. I got the blank stare when describing my SE from A/C & Taxol.
Hope you get good answers next week, no ledge walking, BASE jumping or any other risky moves...
A relaxing massage is the BEST.....
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NEED A COUNSELOR IN SEATTLE - I have a Stage 4 friend whose husband has been very caring and supportive during the last long round of chemo, but after it was finished, he fell apart in a messy way. Now the Stage 4 has shown up again, chemo is re-starting.......and he's not doing well. Does anyone know of a skilled counselor who helps spouses navigate this path? He's really beyond himself at this point.
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kcshreve, the hospital that your friend is being treated at should have councillors that are available to her husband to help him get through. If not, they should be able to direct him to the right place.
Hope he can get the help he needs.
Love n hugs. Chrissy
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lago reminded me too, of this place you can find online called immerman angels, she actually does some volunteer work for them, they find you a match-up whether you are a person going through it yourself, or a care-giver, or family member of a person who is affected. it is in every state, i think, and you can choose to meet or just talk on the phone. at least if he doesnt find professional help to his liking, or that is not his desire, -if he at least knew that there was someone out there who had been thriugh something similar, maybe one day he would call to talk to some one. i just responded as soon as i saw your post, kcshreve, so i didnt go retrieve the number. bless you for trying to help in such an outstanding way.
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kcshreve, a couple of other places to look are cancercare.org and cancersupportcommunity.org. The latter has counselors and a hotline to call.
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I hope this isn't an intrusion. I do not have breast cancer, however, my 10yo has a step mother who has just wen DX with bone mets. She had an MRI done today to see if it has spread anywhere else besides the shoulder. I'm very worried about her and my son.
I don't mean to upset anyone with these questions, just hoping for some knowledge. Everything I read about prognosis is all over the place.
What is the life expectancy today for stage IV metastic breast cancer?
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Hi Hopeful,mayor are not intruding, you have a legitimate question so that is fine. I know hearing that someone close has been dx with stage IV BC is really scary. Depending on what type of BC she has, will determine her prognosis.........if it was oestrogen fed ie ER+ then she has a lot more meds to help her as the Anti Hormonal meds will work well for her........if she is ER- then her treatment options are chemo only.
Should the cancer not gone anywhere else other than her shoulder ie bone, it is possible for the treatment to get her to a point we call NED....no evidence of disease. This does not mean a cure as at stage IV there is never a cure but it does mean that it is possible to be NED for a long time.
The docs usually give the 'two year' talk but these are statistics that they are quoting and a lot of them are out of date. Everyone's BC is their BC and even though we all have cancer in common, we all react differently to the treatments available to us.
Please have hope as there are man women who are living long happy lives with bone mets..........I'm five years up and living life to the fullest.
I hope your GS stepmom gets good new that it is just in her shoulder and I wish her and you the best that life has to offer.
Love n hugs. Chrissy
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Hi Hopefull,
to add to what chrissy said, if she is her2+ there are a lot of options along with chemo, like Herceptin and perjeta, which are very effective in treating that kind of cancer. I don't believe those are really considered to be chemo, though they are administered with an IV and usually along with chemo.
so it's -- is she er/pr positive? If so, what chrissy said
is she her2+? if so, add what I said.
You can be er/pr- and her2+, or er/pr+ and her2-, or positive with all three, or negative with all three.
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Dear Chrissy,
Can't thank you enough for starting this discussion. I have a general question/ concern. And I think it is very similar to what goes around in the minds of most of us. I had a stage I BC with clear margin and no lymph nodes involvment. My oncologist thought that I don't need PT scan, and i was not so convineced. i finished chemo and radiation April 2013 and recovered quickly. I have no pain or any other symptoms, my energy level is back to normal BUT I still live in fear of the possibility of having MBC. Does MBC always have symptoms?
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I just attended a meeting on living with metastatic breast cancer in Rochester, NY, that discussed this question. Some doctors scan regularly, maybe once a year, but the standard treatment is to wait for symptoms and then scan. The theory is that finding mets a little early doesn't affect the outcome and frequent scans expose you to more radiation and may cause cancer. An example was given of a woman who had clear scans and then developed symptoms a few weeks later. Both she and her doctor minimized the problem, since she'd just been given a clean bill of health, and her mets were found later than if they had waited for symptoms and then scanned.
On the other hand, a radiologist spoke to the group about treating individual metastases with stereotactic radiation as possibly curative in some cases with one to five mets limited to one organ. You'd think that would need to be found early, so go figure.
I had mets right away and had symptoms (shortness of breath, pleural effusion) months before I was finally diagnosed with bc, but if I hadn't I'd have wanted to be followed at least with regular blood work and maybe tumor markers that might pick up a problem early.
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idk what form she has yet. She will get her results tm. Hoping for the best.
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Hi Abby, the general consensus on this is wait for symptoms and then scan.......as carpe_diem said, the docs have to weigh a balance between over exposure of radiation and the cancer possibilities from that as well as keeping an eye on us. Even as a stage IV, unless I present with specific symptoms which can be felt on examination,the only scan I get on a regular basis is a mammogram for the one breast I have left.
I will dare to say that anyone who has been dx with a cancer feels the what I call the 'cut loose' anxiety when treatment is finished. The only thing we can do is keep living and just be vigilant as there are no guarantees for anything.
Love n hugs. Chrissy
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Hi ladies,
I have a chemo question..my mum has been on navelbine for a few months. She always used to get diarrhea on the day she took the tablets (it one day of tablets then none for the rest of the week). It was so predictable, she knew it was 9 hours after her last tablet. But last week it was a bit better, then this week nothing. Nothing at all. So much so she and to double check she had taken all the pills.
Is this heard of?
Now don't get me wrong, we are not complaining about a lack of diarrhea! Lol. Just find it a bit odd. Almost unsettling.
She has been trying to eat a little more, maybe that helped..
Or maybe people "get used" to the chemo?
I feel a bit scared as I automatically see it all a bit like morning sickness - that you feel like crap, but you know that because you feel crap baby is ok, hormone levels are high...like there is a correlation between feeling so sick and a healthy pregnancy.... So in the same way, when mum was having side effects we kind of knew the chemo must be working....but now... Is this nonsensical?
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Hi Papillon, it's always worrying when things we are used to change. All drugs can give you the big D but usually as your system becomes a bit more used to then it can also become a little more tolerant of them and it sound like that's is what is happening for your mom. Eating a bit more is also a good thing as her system has something in it to help the digestion of the chemo and protect those sensitive linings.
Love n hugs. Chrissy
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thanks Chrissy. Reassuring and helpful as ever. Xxx
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Hi - I am really enjoying this thread. Thank you. My question is for those that have had bone mets and what your symptoms were. I have been having some persistent, intense mid-pack pains the past many weeks - mostly in the middle of the night that persist til morning, then ease up during the day. I don't have any numbness but have had some other weird sensations. I'm not an alarmist but last time I had low back pain it was a large cyst on my ovary that resulted in a hysterectomy last year so I try to listen to my body. My onc just returned back to town, and I am slated for a bone scan in the morning. Thanks for any insight!
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Hi jltandreilly, bone pain that comes and goes but is worse at night s usually one of the first indicators the docs look for when looking for bone mets............that's not to say it couldn't be anything else it can. I think you are doing the exact right thing by getting that bone scan to make sure.
The best of luck to you that it is the something else.
Love n hugs. Chrissy
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so I got the update... My sons step mother had her bone scan done. The mets seems to be only in the shoulder. She has to do chemo, radiation and hormone drugs.
First, they have to be sure her heart and liver can take it.
They said her prognosis is "decent".
Is that a good word when dealing with this??
What if her heart shows it's not up for it?
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Hopeful, the docs will probably scratch the chemo but continue with the Hormonals.........don't panic, those little pills pack a powerful punch and can do wonders they just take a bit more time to kick in to high. 'Decent' is a not too bad prognosis and I think you would find that most bone metsters would get the same, including me..........as I said earlier, I'm five years out and doing just fine after being given the two year speech.
Dealing with stage IV is a waiting, treating, watching thing and even though it can be very frustrating for all of us including those around us, life can go on reasonably normally.
Wishing your sons stepmom a good response to her treatment.
Love n hugs. Chrissy
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Thank You so much! Its a very stressful time and I want to do all I can to help.Would you have any insight as to how I should approach my son about this? He was told about her original BC about 3 years ago but I know he doesnt really know the extent of it.
Is it best just to leave it alone until/ IF the talk is inevitable? Is it better to inform him of the risks now?
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Dear Hopefull32, In addition to the support that you are receiving from our members, you may want to check out the link above that offers information about talking to young children about cancer. You may want to share it with you son's stepmom as well if that seems appropriate to you. Thanks for posting your questions. The Mods
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Hopeful I know you want to protect your son but it is up to his step mom to do the telling. She may not want to worry or upset him right now until she has a better handle on it herself. With the cancer just being in her shoulder it is quite possible for her to live well for a lot of years before the inevitable happens.
If I were you, I would just stay in the background ready to offer a strong shoulder for when they may need you and then you can impart what you have learned here. I understand just how stressful all of this is and I also know that you want to help in any way possible.
Love n hugs. Chrissy
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Thank you for responding. Scan done today - waiting, hoping, praying!
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jltandreilly, keeping my fingers crossed for you!
Love n hugs. Chrissy
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