If you are not Stage IV but have questions, you may post here
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No problem. I understand about rare BC myself having inflammatory breast cancer. The treatment re brain surgery and/or radiation I can also answer questions related to those.
You are an amazing friend to help her navigate this new part of her BC, especially since it means diving back in yourself. That can't be easy for you either. You are quite exceptional.
As far as google, the main culprits to look out for are survival stats for Stage IV (they are outdated and do not reflect improvements in treating BC. The other is what is mentioned above about the brain cancer. I kept landing in Glioblastoma forums when researching my whole brain radiation and managed to scare myself to death about my outcome. I feel quite well now.
Good luck to you both. If you are researching, reading back the Brain Mets Sisters is helpful. It is not a super active thread but that is because a lot of us are busy or more involved on other threads. link is below.
https://community.breastcancer.org/forum/8/topics/777599?page=1
Another thread I like when needing a pick me up https://community.breastcancer.org/forum/8/topics/818931?page=1
and if she is into exercise or even just wanting to be active at some point, this thread is excellent and motivating. https://community.breastcancer.org/forum/8/topics/851580?page=1
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Greetings,
I am taking care of my mother who was diagnosed with Stage 4 a year ago. She had never been diagnosed before this and had been under the care of a totally incompetent primary care Dr who said her illness till then just required her to drink more water and get more exercise over a dozen visits over a year. It was bad, I had to intercede to get even xrays taken when my mother had rib pain and upon finding 7 fractures, the primary care Dr just said, oh she has osteoporosis. Her undiagnosed cancer had spread to her bones and she was almost in a coma from calcium poisoning before I brought her to the emergency room and they diagnosed her there. It is hormone positive and she responded well to the anti hormone treatment till it did not. She looks and feels much better but it has spread to her liver, adrenal gland and perhaps lungs. She has started the oral chemo pill but even with this her CEA reading is increasing and she is feeling sick from the chemo.
Her CEA level was pretty stable around 400 while the anti hormone was working. As it began to fail the CEA increased and over the last five months it has basically doubled every three weeks. The end of March it was 3,993, mid April 10,498, beginning of May 16,736 and now the end of last week 30,495. I can't even find online anyone who has had them this high. Her cancer has been spreading the last few months particularly in her liver. My mother does not speak English well and I interact with the cancer Doctor who is great but you know how hesitant they are to say what they really think. Has anyone else dealt with tumor markers this high? Even the Doctors, though they try and hide it, seem very alarmed about the levels. I want my mother to have the best quality time left. There is no one I can talk to about this or even ask about the tumor markers. Has anyone with markers this high had them knocked down and have quality time? Has anyone had CEA levels this high and they did not mean much? Her CA-15-3 is now 2617. Thank you.
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hi, happy that there is a discussion hear. I am not diagnosed with satge 5 but concerned about some symptoms so would like to ask
Any body has pleural effussion. I am worried that i might have it bcoz i have dry cough and shortness of breat
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Dear Familycaretaker,
Welcome to the forums!
We're sorry to hear about your mom's diagnosis and of her experience with her initial primary care doctor. As well as the responses that you recieve here in this thread, you may also find it helpful to reach out to others in the forum below which is dedicated to family members of loved one's with a Stage IV diagnosis.
Keep us updated on how she's doing!
Wishing you and your mom the best,
The Moderators.
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Hi all,
Wondering if anyone has an opinion on tiredness vs. fatigue as a symptom of recurrence. I have been very tired lately, like muscles feel like jelly kind of tired, and that's after a nap. I haven't felt like this since I was actually going through chemo. I do have a 1.5 year old that doesn't stop moving and I'm not the best sleeper at night but I do rest every day for 2 hours while he naps. I just always have this worry and question in the back of my mind, wondering what is normal tired vs. what is fatigue indicating a bigger problem? I have also noticed some weight loss, not major but the last time I lost weight without trying was just before I found out I had BC. I feel kind of dumb mentioning this because other than that I feel pretty good...
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I can understand worrying about recurrence as it is always in the back of our minds.
I like this article that gives the difference between fatigue and tired. http://www.reuters.com/article/us-fatigued-tired-s-idUSCOL75594120070207
I understand the anxiousness you have. Things that are common if recurring would be things like pain that does not go away after a couple of weeks, fatigue to the point that you cannot think straight or function. When it comes to brain issues, looking for things like falling down, sudden weakness in the the legs, vision problems are the most likely factors. I would not be surprised that your busy lifestyle plus having already having been though cancer treatment contribute to your fatigue.
Mention it to your family doctor unless you are still being followed by an oncologist. Check what your eating, hydrate and to fight your fatigue, exercise if you do not already do so. Even if it involves walking a few times a day if you don't like long distances. It would not take long to benefit and is one of the easiest ways to improve our energy level.
Good luck with everything.
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Thank you so much for the thoughtful and helpful message.
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You are more than welcome. Glad I could be helpful.
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Hi
Can any of you explain to me early symptoms of breast cancer mets to lun
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Posting here because I'm very surprised her mets showed up 27 years after her primary in 1992. Does this seem even plausible or would it be from an unknown primary? At some point I'd like to stop worrying about posible return of BC, or maybe this is the lesson, to forget about it or you'll worry for the rest of your life
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Nilelady, signs of lunf mets are tiredness, shortness of breath and a cough that won't quit. Not everyone gets all of these some will only get one. The best thing to do if you are very concerned is to have a conversation with your doc.
Quinncat, Olivia Newton-Johns cancer return is definitely mets from her BC dxd 25 years ago. Unfortunately this can happen to anyone who has been dxd with BC. It can return at anytime but please don't allow this possibily to ruin the rest of your life..........live each and every day the best way you know how and should your cancer return, you will deal with it knowing that you have lived.
Love n hugs to both of you. Chrissy
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Chrissyb-that is certainly the lesson if BC can return at any time, but I've never heard of that amount of time lag. I'm also thinking she may have been Stage IV for longer than she is letting on, but finally was forced to announce it given it interfered with her tour schedule? In any case, 25 years is a long time, so might as well be a new cancer. My Aunt is on her third cancer and still kicking at 87 (BC twice at 79, 84 and kidney cancer at age 85)
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ONJ seems very involved since she has a center in Australia and was vocal about it during a time when it wasn't talked about as much publicly as today. She seems like a loving sweet lady who wants to help others. I think she's just in the 1% or whatever the % is for being that far out then stage IV.
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Quinncat,
I have heard of others who had a long period between original diagnosis and recurrence. I myself was almost 16 before having mets in the lung. It does happen unfortunately but as you have been told, this is a good reason to live each day. Worry will get you nowhere.
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My first biopsy was in 1995, first treated in 2004 (they missed it in 1995). I was diagnosed with mets in 2015, surprise, surprise. It just didn't occur to me after that long.
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hello everyone, hope you're all doing well. I had my last radiation on 01/31 and I'm taking Anastrozol since December 2016 and since then have hip pain and lower extremities, spoke to OC she kinda dismiss it for AI. I have a history with degenerative disk disease and lately have some backaches. I always sleep on couch because my bed is not good for my back. Then I also stopped down to clean the litter for my cats so it might cause. My OC has not mentioned anything about PETSCAN. If it's bone Mets, what kind of pain do I look for? Do I need bone scan or PETSCAN? Thank you everyone.
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Houston- AI's cause a lot of joint and muscle aches. When I was diagnosed with mets a year ago, I had three areas in my torso that hurt like the dickens-like some one is drilling a hole in your bones. Sounds as though you have reported the pain to your Onco. I believe that mets in the knee and below are quite rare, but if the lower back pain worsens, report to your Onco. Maybe they could do simple imaging to check for the status of the disc disease. The best scan for mets is a PET scan. Best, MJH
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I'm blessed to be an almost 20 year survivor; Stage 3, one cm tumor, estrogen positive, four l nodes involved out of 22 removed. I had immediate mastectomy then tram and 12 chemos of adr., 5fu, and cytoxan. After this, 35 radiation treatments. I tested positive for the BRCA 2 gene in 08 and had right breast and hysterectomy. My question is; have any of you had a difficult time with family and friends during and after this ordeal? I put on 60 pounds during chemo and have taken off only 15, my family is very 'image minded' when it comes to, appearance, etc. I've probably been extra sensitive since this happened but hey, I'm single and on my own and feel I've done pretty well. I deal with MASSIVE fatigue and have to say 'no' to lots of invites then family and friends don't 'get it' at all. Just curious if anyone else, especially single ones have dealt with this? Was on tamoxifen for three years and then arimidex for nine. Are there any single folks out there who have ever dealt with this?
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Congrats on 20 years out scar88! My fam is very image/status minded. When I was put in a psych ward 6 years ago pre-bc they were more concerned about my getting better asap/image stuff than what's going on with me. They gave me simple to understand info to give to my fam to understand what's happening to me and I saw they threw it away. No support. So with bc I chose not to include fam. They don't know and I have no intention of ever spilling. I'm not a fit for them, never have been. So I just stay in touch with mom/dad via email and not much the rest. I have major anxiety issues and their insensitivity could drive me back to the ward again so I'm doing what's best for me. As for what I told them for being mia for the past 3+ years except email and cards is anxiety. Feel so much better not being around such stress.
Sometimes it's best to be alone than surrounded by people who ultimately aren't a positive for you. I have a great friend here and my bro who knows about my bc is cool. Everyone else who doesn't get it, bye. They aren't your true friends. I've said no plenty of times to my bff here and she's cool. I don't hear you are STILL tired after 2 years being out? My fam would say that.. So I let go of anything that doesn't help me and forge on.
Join us here https://community.breastcancer.org/forum/99/topics/768339?page=288#idx_8614 where us singles talk about anything and everything with being single. There are other such threads to to join in. You aren't alone.
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I was just wondering how many were diagnosed with a recurrence, but did not have any obvious symptoms? I went to the MO the other day for some swelling in my neck. He said it was nothing cause he could not feel any lymph nodes. Blood work was run and my CEA and CA 29-29 came back elevated as well as my liver tests came back higher than usual. None of the numbers are extreme, just above the range (except for the CEA). Having a Pet scan done. Anyone experience similar?
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Hi Lori. Personally I had symptoms but I do know of many who had none and the mets were found purely by accident.
Keeping everything crossed that your elevated numbers have some other explanation.
Love n hugs. Chrissy
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Thanks Chrissy
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How didn't you know you had bone mets? Was any of your blood work elevated? I have pain in my right hip and have had it since Jan probably. Some days are better then others. Frankly I blame tamoxifen because I was only stage 1 with no lymphnodes. Plus had bone scan at original diagnosis a year ago. But how would I know I feel it was cancer? It doesn't seem strange that it's only my right hip that hurts. No other joint or muscle hurt
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Hello everyone, I have a kinda similar question like Loribach, I would like to know if anyone has a recurrence after treatment with neoadjuvant chemo, as part of their treatment? I heard many success stories but many also have surgeries as initial treatment. I wish I know better and tell the doctor in April 2016. The OC just give me chemo first as her plan saying she wants to save the breast. Realistically, I have a few calcification too so how can you do just lumpectomy?? So later they did mastectomy in Oct and found LVI. I blamed that on neoadjuvant chemo. If I had done a mastectomy to begin with, it wouldn't have a chance to spread. Now I'm afraid that recurrence is more likely. Does anyone have an experience with neoadjuvant chemo. Thank you.
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Hello everyone, I have a kinda similar question like Loribach, I would like to know if anyone has a recurrence after treatment with neoadjuvant chemo, as part of their treatment? I heard many success stories but many also have surgeries as initial treatment. I wish I know better and tell the doctor in April 2016. The OC just give me chemo first as her plan saying she wants to save the breast. Realistically, I have a few calcification too so how can you do just lumpectomy?? So later they did mastectomy in Oct and found LVI. I blamed that on neoadjuvant chemo. If I had done a mastectomy to begin with, it wouldn't have a chance to spread. Now I'm afraid that recurrence is more likely. Does anyone have an experience with neoadjuvant chemo. Thank you.
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Hello scar88, congratulations on your longevity, that really inspired me. I would like to know do you follow any diet plan, avoiding certain foods, like red meat, milk, sweets, or stay active exercise? Do you take any herbals, vitamins? Thanks so much.
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Ladies - this is a stage IV thread. By understanding, and as detailed in the header, those of us who are not Stage IV normally don't post or "visit" or "chat" on Stage IV threads since the concerns of these members are different than ours.
Crissy started this thread for people who have serious concerns about mets to Stage IV. Many of us have had recurrences, and all of us are nervous about every ache & pain for a long time - maybe forever - but there are lot of other threads to discuss our aches & pains and what general health plans we want to follow through out treatment & beyond. It's important that you make an appointment with your doc if you have on going concerns.
I think we need to respect our Stage IV sisters and only post serious mets questions that we've already tried to explore on the regular threads. I'm not meaning to pick on anyone. Crissy, please let me know if I'm incorrect. This thread has been on my favorites since my diagnosis & I read it every day. Because of course like every BC patient, we always vigilant if not downright worried. I just know that the resources of our Stage IV cohorts are often stretched. We do so appreciate their time & advice & guidance.
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Mom2fourplusmore... A couple of thoughts on your hip pain, which I suspect is from the Tamox. One thing you might do is ask your onc if you can take a little Tamox holiday to see if it improves. If it does, you'll know Tamox is the the cause. Or, you can ask for an MRI, which should give a pretty clear indication if it's med-induced arthritis or similar non-cancer issue. Assuming it is something like arthritis (or similar joint discomfort), sometimes the supplement curcumin can help. I use the one by Life Extension, and it makes a big difference in my joint pain. Deanna
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Deanna, that's a good idea with taking a break to see. I will see if that helps it.
MinusTwo, that is very nice of you to try to make sure this board is staying on track. However if you look at the original post it says "for people who DONT have stage IV but have question she about stage IV." So I believe this is the spot to post questions if you are wondering about symptoms. I can see how this wouldn't be confusing because the thread is apart of the Stage IV only group.
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Mom2four - I have bone mets in my ribs but have never had any pain. conversely, I've had such severe pain in my left hip that my MO ordered a bone scan and CT, with no mets findings. We suspect a pinched nerve or possibly arthritis (I don't take Tamoxifen or an AI so that's not the cause).
Pain isn't always a good indicator of mets. But if you have pain for > 2 weeks that isn't easily controlled by OTC pain meds, see your PCP it MO. AIs and Tamox can make already-challenged joints even more painful.
Good luck!
*edited to finish my post since my uncaffeinated fingers hit the Submit button too wuickly
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