If you are not Stage IV but have questions, you may post here
Comments
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Linda, I saw your other post. Maybe some Ativan for your anxiety. Every ache and pain and new bump makes us all think the worst. Most of the time it isn't.
However I've put this project off too long as well so my husband agreed we need to review what we have and fix what we don't. He has heart disease so who knows who goes first. He's so good with our IRA's, I don't want that job. He doesn't want my jobs. Aren't we a pair?
Ahhhhhhhhhhhhhh paperwork.0 -
I was stage III and didn't handle chemo very well. I was horribly anemic and neutropenic and have remainded neutropenic since I ended chemo in Feb 2010 three years ago. I am on Arimidex and I have a lot of pain. In spite of that I live a very active lifestlye, but I do get sick frequently because I am so neutropenic. So what I am saying is I am sick all the time! I have pain all the time! How would I know if it were metastatic pain/illness? I just went to the doc today for respiratory crud I have had a month and he put me on a third antibiotic. He did order CBC CMP so would that show some major abnormality if there were tumors somewhere? How would I know? I don't want to live my life in fear Im going to die (guess what- we all will), I just want to have a grasp on what were other peoples signs or symptoms that led them to the mets, so I can figure out which pains are caused by being in a post menopausal 38 year old body and which ones are concerning.
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karody - sorry that you are not feeling well. It was not you that didn't handle the chemo well, it was the chemo that was very rough on you and your body. It is hard not to think of mets every time there is an ache or pain. Often the meds we are given have SEs which cause a lot of aches/pains. I have been told that if the symptom/pain lasts for two weeks or more then it should be checked out.
I have just gone through a yr where I was sure that everything was a symptom of progression or new mets. Definitely worrisome. But after all of the scans and testing and now with the help of Ciprilex, I am feeling a bit more relaxed about things. It all takes time and perhaps some anti anxiety drugs to help us enjoy more of the good and push the fears to the back burner.
I hope that you are able to get to a place where you are feeling better both physically and emotionally.
((hugs))
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Karody,
If your tumor markers are accurate, make a plan with your doctor to have yourself screened every six months. That way, you can keep an eye on any progression.
Contact your original oncologist and ask if she ran a CA 27-29 blood test on you to see if you can use this test as a way of checking things out. You might also request a baseline PET scan. That's a more expensive test, so your Doctor will have to present a compelling reason to the insurance folk to cover the test.
As for the aches and pains of a post chemo body, and the use of same to indicate disease, Barsco is right - any pain that lasts longer than two weeks needs to be checked out. I keep a log on my daily planner. That's what sent me in to the doc when I was dxed Stage 4; I had rib pain that didn't resolve.
You also need to get with your Doc and figure out how to get your body feeling better. Maybe you need to see a nutritionist, a trainer, etc . . . . A post-chemo body needs more management than the average person's.
Remember, most of us don't progress to Stage 4, and even when we do, it can be treated and managed.
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hey everyone. there is a contest going on now for best healthblog. the winner will receive one thousand dollars. two blog sites are neck to neck. one of them is for rheumatoid arthritis and the other one is our own ann [coolbreeze i THINK is her user name] Please google Breast Cancer? But doctor i hate pink blog. you can vote twice a day. anne is stage 4 and not doing well at all now. she desperately wants to win so that she will have a grand to go towards her sons college. PLEASE VOTE FOR HER. you can vote every day[3 days left] Also, after you have gone online and voted, please mention this in threads you are active in and any social network you are part of. thanks
vicky
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Just so you know, in order to be able to vote you must belong to a social network like Facebook or twitter.
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Ladies ~ You are all a true inspiration! I know that sounds so cliche, but there are no other words for it.
I joined BCO in January due to a little scare about a "thickening" on my mamo. I had a biopsy and it's b9. I have an MRI coming in late March.
Now, I'm back to this website for a much bigger scare . . . My sister was dx 9 years ago with ILC. Even back then it had already metastisized to an area in her abdomen (I'm not sure exactly where). She had a hystorectomy, chemo, radiation, and I'm sure she was given drugs but I'm not sure what. She was been declared "in remission" after a year. Although she has had a lot of pain in her legs, she has been living life for the last 8 years as a widow raising two boys.
Last week, she (finally) went to the ER after a month of vomiting after eating large or fatty meals. They found a "blockage" in her colon. Surgery confirmed that it was a BC met. Before her surgery and during all the tests the hospital was giving her, an MRI also found two "bone lesions". We are already convinced that these are mets as well. My sister says she's prepared to fight and go through treatment once again. She is still in the hospital recovering from her surgery and will probably go home in a few days; once she's able to have a BM.
Her ONC has not yet seen her because she is still in the hospital's care. She's hospitalized for her "blockage", not her cancer treatment. She will see her ONC once she released from the hospital.
Obviously, I am beside myself with fear . . . Fear that she may not make it for even another year. I know now that she was lucky to have already made it 9 years with metastisized BC. Her boys are now 18 and 19 years old, but they still need her! She's everything to them.
I will soon have the opportunity to speak with her ONC. Even though he has not yet seen my sister, he does have all the recent test results and reports.
My question to all of you: What questions should I ask the ONC when I talk to him? I can only think to ask what he thinks her prognosis is, or how long he thinks the cancer was there. Can anyone please give me some advice to the information I should try to get from him? Also, has anyone here ever have mets to their colon or bones?
Thank you in advance for any advice or info you can give me.
Blessings to each and everyone one of you lovely ladies!
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Mets to the bone are quite common and the first area of mets for many of us. Your sisters colon blockage is not common and I can't contribute much to that.
I will tell you what we say about prognosis on here. There is no expiration date on the bottom of your sisters foot. However there is also no cure for stage IV breast cancer. She will be on treatment for the rest of her life. It really doesn't matter how long it was there, it is what it is. Now she will need to face a treatment protocol that is about buying time.
Your questions might be more in line of how you can support your sisters treatment. What her side effects might be. How often she will need to see her oncologist. Whether she would benefit from an NCI cancer center with clinical trials or targeted treatments. By understanding how the treatment may affect her, you'll be in a better position to understand what you can and cannot do for her. Unless she asks you to, please don't bombard her with Dr Google research or miracle cures. Nothing we all get more irritated with than a family member or friend trying to direct our treatment.
Ask her what she wants from you and then follow through.0 -
Chickadee ~ Thank you so much for your response.
Yes, I've done what you all say not to do and I've been to Dr. Google. I know that her prognosis MAY not be good, but I am not taking that to heart and I'm not sharing the information with anyone. I don't want to scare anyone and I also know that my sister's case is her case and no one else's. She has already beat the odds by far.
I've also learned that she's got positive things going for her. Those who have bones mets generally do better than those with mets on other organs. I'm not sure if the colon counts as a "other organ". Her cancer is also estrogen receptive and therefore grows slower (I think), and her hysterectomy helps with that as well. She also went a fairly long time before her relapse which, as I understand it, helps her longevity.
I want nothing but to help her. Unfortunately, I'm 3000 miles away from her and can't help her as much as I'd like to. My mom, who also lives in another state and lived with her for a year when she was diagnosed the first time, is going back to her next week. I thank God that my mom can be there to take care of her, but I also hate to see all of this put on my mom and that my dad is being left home alone. Both my parents are in great shape, but they're getting older. I am going there for a week at the end of March, but I just wish I could be there the whole time to help her.
Thanks for listening . . . and thanks for the advice. I promise not to hound her with anything. I will be there for her (although 3000 miles away) and make sure she knows that she is loved very much.
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Hi Ladies, I have a question for brain mets, I was wondering if you had headaches and if so how did they start out? If so did they start out sorta mild and gradually get worse? I have had a non stop headache for a month. I have suffered with migraines for years but they usually last 2-3 days and were with my cycle and since chemo 2 1/2 years ago I have had less of them. My migraine meds. help lessen the pain of this headache but if has never gone completely away in a whole month. I am trying to stay positive and not run to the Dr. because I know she would scan and if just a hormonal migraine Id just a soon not pay for another scan. Still paying on the last of them post chemo rad. and surgeries. Thanks ladies.
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Sue you are allowed to post here, that's what this thread is for.
I don't have brain mets but a good rule of thumb to live by and many do is if the pain lasts longer than two or three weeks and seems to be getting worse, get it checked out. It's always better to err on the side of caution than want to kick yourself because you neglected to check something out.
Good luck.
Love n hugs. Chrissy0 -
Hi ladies I wanted to ask if anyone with ILC has mets to their stomach or intestines? I know this is less common. Bean Im sorry that I am asking this question after you said your sister has a blockage and it could possibly be caused from a GI met. Thanks for any info ladies.
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Meimcbee, I don't have ILC. Hopefully one of the other ladies will check this thread and be able to answer you.
Love n hugs. Chrissy0 -
Hi Mel ~ Yes, it is an ILC met in my sister's colon. I have not heard from anyone else on this website that this has happened to, but I'm curious as well. I hope you find the answers you're looking for.
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I do know one lady she was older she had BC and when it can back it was in her colon. I don't know the status of her 1st BC.
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I have a question about my mother. She was diagnosed with stage 2a breast cancer, grade 2 tumor her2 positive. She had the breast completely removed then chemo and herceptin back in 2010. The past few months she has had bone pain in her hip. Its a deep pain, local and its the bone that sticks out at the top of the femur( I hope I am explaining this right) maybe called the trochanter region? Anyways she says it hurts for a couple of days then about a month later it returns for about the same amount of time then goes away again. Off and on like this for months. What worries me is she says its feels like its in the bone and that hurts her mainly at night especially sleeping on it. I honestly dont like the way this sounds and I can not find any other reason than mets to cause her pain. She has blood work every 3 months it all has been good but I have seen that its probably more like 50/50 on catching recurrence so I don't have very much confidence that it would have caught mets.
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It could be arthritis or a spinal compression........but she certainly ought to run it by an oncologist and perhaps a bone scan is in order.
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I second Chickadee. Other things can cause deep bone pain but a bone scan would be a good place to start ruling out mets. Or identify the need for further checks.
Depends what your mum wants to do. It can be hard to think about getting back on this bandwagon. But unfortunately, not getting it checked out won't make it go away either.
Moira
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Thank you for your replies. She is going for her check up this week and I will bug her and make sure she tells the onc. She called last month when it hurt and they told her to go to her GP but by the next day it had quit and she never called. I'm really worried and I know she isn't wanting me to talk to me about it much since I'm pregnant and she is worried I will get too upset.
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Hi again OBX,
Hope she does raise it with her onc. If she thinks it might upset you then you need to be super calm and encourage her to do it so that it doesn't continue to make you anxious. "Do it for me Mum".
Maybe a little pregnancy guilt to encourage her to keep you happy. She will not want to upset you or do anything that will spoil the pleasure of the coming baby. Congrats on that joyful event too.
I am careful here to say I'm no doctor and this is not gospel but generally pain from bone mets does not come and go. Mine started like a pulled muscle and then over a couple of months increased to a very deep pain in my right hip. Didn't ever come and go. Pain meds helped but they were just over the counter ones and bone mets need something much stronger usually. Still the pain was always there. That is the usual pattern for bone mets but with cancer it's a tricky beast and throws curve balls sometimes. Still the fact it is not constant and steadily getting worse is hopeful I think.
All the best for the visit this week.
More best wishes for the new baby.
Moira
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Moiralf, Thank you for your kind words and for taking the time to respond. I agree and will try to stay as calm as possible so I don't stress her out. Although it is so tempting every time she has a bone ache or head ache to take her running and screaming in panic to the doctors office in fear of it coming back.
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One of the best things you can do is not be a 'know it all' like alot of people have tried to be to me when they don't even understand what Stage 4 means (they 'know' someone who was Stage 1 and survived so they assume every breast cancer patient is the same and they know everything about it now) and then tell me, oh you'll be just fine ...... Secondly, be there for them. I have been so blessed with family and friends who love me and ask about how I'm doing and truly offer to help. On the other hand, I have many "friends" who have disappeared. Needless to say, they will never be welcomed back into my life or that of my family's.
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This should be discussed with her onc. Perhaps a Pet or Cat scan is in order.
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I am trying to raise the profile of Stage IV patients at major breast cancer events. Metastatic patients should be honored as heroes at these events, not hidden away as downers. Many people untouched by breast cancer believe mammography guaurentees early detection and cure. I want to raise "awareness" it isn't always true. I am captain of a team called IV Moving Forward in the American Cancer Society Strides Against Breast Cancer Walk in Park Ridge, IL May 4, 2013.
I am looking for feet on the street, not fund raising dollars. If you can join me, I will pay your registration fee. If you can't join me consider sending a passionate advocate who will speak out. More cures, less marketing.
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The event website is main.acsevents.org/site/TR?fr_id=47497.8&pg=team&team_id=1380444
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Cynthia - while I applaud your desire to not hide metsters away and for people to realize that breast cancer isn't the 'good' 'curabley' cancer, I certainly don't feel I'm a hero. I'm just a regular person doing my best in a sucky situation. I would cringe if someone honored me as a hero at an event.
I hope your event goes well!
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I second that. The intent is wonderful but we are not heroes, we are flesh and blood women with families in pain and we want it understood that breast cancer isn't pink, pretty and curable. Just like every other terminal cancer its painful, ugly and incredibly difficult. The money isn't getting to the research for metastatic cancer.
I hope you get lots of feet and attention.0 -
I don't feel like a hero, either. But I DO appreciate that Cynthia is actually DOING something to raise awareness. Regular mammograms normal for years, then suddenly diagnosed at somewhere between IIb and IIIa (probably at least IIIa if not IIIc initially due to number of nodes involved...) and metastatic within 2 years. I, like many others, did what I was supposed to do, but early detection failed me, surgery & chemo failed me. And I DO hate hearing that breast cancer is curable - yes, that's almost true for some, but not for all, and somehow I sometimes feel guilty for having advanced stage - what could I have done more to keep myself healthy and from progressing? And I realize there is nothing I could have done differently in all likelihood, I just had the bad luck that so many other people with cancer have, including metastatic BC, as well as many other cancers. Sorry to ramble.
So, Cynthia, you GO GIRL! Best wishes for a great turn-out, raise some awareness about metastatic BC, as well as other cancers that are not curable. We are not heroes, as Chickadee and Annie have said, but we just do the best we can with what we have.
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Hi Cynthia
I am on the board of the Metastatic Breast Cancer Network. Three of our board members are based in the Chicago area. Pls PM me and we can go from there. Thanks.0 -
Hello all. I've been lurking here since August, obsessively learning all I can about this damn disease, ever since my 32 year old DD was diagnosed. IBC with bone mets, Stage 4 fresh out of the gate, ER+, HER2-. She's done some reading here at BCO, and other places, but a lot of it was overwhelming at first, so she's delegated me to do most of the research and relay the info to her.
She's got a great oncologist, very straightforward, which my DD appreciates, and she has moved forward very aggressively with her treatment. She's had 4 rounds of AC, and 12 weekly Taxol, ending on 2/15. Just repeated all her scans and got great results. Dramatic improvement in all areas, resolution of many of the bone mets, and much less skin thickening, etc. We are SO grateful that she responded so well to chemo, but now we are at a crossroads. She started Tamoxifen 2 days ago, and got a referral to the surgeon, which my DD was very happy for, because before now the ONC was hesitant to even discuss the topic.
Just met the breast surgeon today, and the recommended step was MX for the left breast, with BMX if DD prefers, and just continue hormonals for now. She's recommending holding off radiation so it is fully available in case of progression. She's also agreed with our questioning the need for ALND, since we know for a fact that the BC is 'out of the gate already', and since the one swollen aux node has resolved with chemo, just to watch it for now. That greatly eased my DD's qualms regarding the risk for LE from BMX. Surgeon referred DD to a plastic surgeon to discuss immediate reconstruction w/small implant. She has very large breasts, and wants to end up with much smaller ones, for sure.
I guess the questions we still are kicking around are because of the IBC along with Stage IV. From what I've read, usually that means delayed reconstruction, because it seems most get radiation right after surgery. Is it crazy to even consider having immediate reconstruction with a small implant?0
