If you are not Stage IV but have questions, you may post here
Comments
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Tessu, pain is usually a good way to monitor our own bodies so in a way it's a good thing for us.
Having fear of progression is very normal but how we deal with that fear is what makes the difference. For those who have already progressed, we know that we just need to do what we need to do.
Please let us know how you get on and never apologize for asking questions......it is how we all learn.
Love n hugs. Chrissy
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PezGal, I have significant bone mets, and my ALP has never been elevated. Combined with an elevated bilirubin, one would think about the liver. The GGT can be a little more specific for gallbladder and bile duct. As stated before, if these results are within the normal range(should be on your lab report following result), I would just keep a watch on them. What about your AST and ALT levels? These are enzymes that rise with cellular damage to liver. There are several viruses that can cause elevated liver function tests as well. The most obvious being hepatitis,but also Epstein Barr(mono) and CMV. If you are still concerned, talk to your MO. Ask if you should have a hepatitis panel drawn. This could just be a passing thing. Have you taken a lot of acetaminophen? As far as the triglyceride, were you fasting? Triglyceride is elevated if drawn in close proximity to eating a meal. Again, is it within the normal range? Hope this helps! Best. MJH
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Tessu - you are not alone. I am going through this exact same thing. I've been feeling great the last few years, always kept up on my scans and appointments. Fast forward to 2 months ago and I started feeling numbness in my toes.. progressively came up both of my legs. An MRI last week showed a lesion on my T10 that is highly suspicious according to the radiologist. PET and brain MRI scheduled for next week. The ladies here were incredibly comfortingly and supportive when I went through this crap years ago and I have no doubt they will be again, and for you, should you need them. I wish you all the best.
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I was diagnosed back in March, I had a biopsy of the tumor and of lymph node in my arm pit. So I knew I had spread to at least there. I had a strong feeling I needed a Pet scan after MRI showed cancer was throughout my breast. I had to switch drs to get that ordered. My scan showed multiple node active under my chest muscle and next to my airway under my breast bone, as well a tiny spot on my Lung. The Doc said she is more worried about the Lymph node then my lung so I am getting another biopsy next week.I was told I would be stage 4 if those nodes are positive as it is considered distant spread.
Has anyone else had spread in lymph nodes other than arm pit and not to other organs? What was your treatment//experience?
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Hi. So I'm right now undergoing the "red devil"... one more cycle before an 8 week weekly cycle of I don't remember what's next. My tumor is about 2 inches big and within my duct. I'm not looking for any sort of firm answers but all I keep getting going into the oncologist is nothing. No answers. They don't know what stage (thinking IV)and quite frankly I don't blame them for not giving me survival odds yet. I'm only 37.Surgery has to be done first so see how many lymph nodes exactly. Surgery should be done, according to my calculations, end of July, early August.
What do you all think? I'm pretty sure it's a stage 4. My grade is at 3. I know its in my lymph nodes and last PET there was no movement to my organs but have had a bad cough for about a week where I'm leaking urine.
I'm scared to death right now...
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JK1979-Clearly you need more information here. You deserve to have your MO(medical oncologist) outline your treatment plan and explain things to you so that you are clear. Ask! Have someone write it down for you.
I am thinking that they are wanting to shrink that damn tumor before doing the surgery. This is standard practice with larger tumors.They will stage the cancer after they do the surgery. it will depend upon tumor size, grade, and node involvement. I see that the biopsy must have shown Grade 3.
THERE IS NO REASON TO THINK THAT YOU ARE STAGE IV! Your PET scan proves it! A bad cough that is making you wet your pants is most likely just that. When I get a cold, my cough can get so severe that I have to wear Depends!
They are going to treat you very aggressively here in order to avoid Stage IV later. You have to take survival odds with a grain of salt. It varies so much between individuals. You are also very vulnerable right now and it's very easy to project what "might" happen in the future. Take it one section at at time. Easy to say, but it's a skill that can be learned.
Sending powerful healing thoughts and love, MJH
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I'm a stage 2B TNBC three months out before my five-year mark. But my friend (metaplastic, stage 3C) was just diagnosed metastatic to brain with a big tumor. She'll have surgery next week (not sure what kind), then some radiation follow up. The surgeon said it is just the one, big tumor. Does anyone know whether a SINGLE metastatic brain tumor is sometimes cureable?
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I'm so sorry to hear about your friend's diagnosis. I can empathize with her as I have been through a similar experience myself.
To answer your question, once you are Stage 4, the cancer is not curable. This does not mean she cannot have a decent life BUT it is important to know it won't be cured. She will be treated for cancer for the rest of her life.
I know this is scary to hear, especially since she is facing the unknown. How she does will depend on different things. Are there any other mets from the neck down, if not, she could recover and live pretty normally. She will likely be given drugs to control the cancer even if she becomes cancer free after the surgery and or radiation. If she is able to, she should consider some exercise before, during and after. This can help burn off stress and improve her fatigue. It also helps aid recovery from surgery and radiation.
I don't mean to infer she should not expect a good life, surgery and radiation can offer a lot of hope for a fairly normal life. She should do her best to avoid googling too much initially. This site is quite helpful ad she won't land in brain cancer sites. Brain cancer may have some similar treatments but it is different and much scarier.
I was diagnosed last summer with a brain met. I went through surgery, whole brain radiation. I have not had any other met since it was removed. It does take a long time to recover BUT I feel better now than I have in 2 years. I am at the gym at least 5 days a week. I still have my drugs every three weeks but they do not trouble me. I hope to continue a long time. If you have questions, feel free to message me.
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Thank you, Mara. I appreciate it. We went through our initial breadt cancer diagnoses three years apart. We both did chemo, radiation, BMX, and reconstruction. She was later stage and also Metaplastic in addition to triple negative, ie she's an even rarer form. She is staying away from Google. I'm doing some research for her. Thanks again
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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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