If you are not Stage IV but have questions, you may post here
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I lean on stories about long-term Stage IV survivors to remind myself that if this sucker spreads, I can still live a long time. But it seems like most of the long-term Stage IV ladies were stage IV from the start of recurred a long time after initial dx, allowing for better drugs to be developed. Obviously, a quick recurrence indicates some degree of treatment resistance.Are there any stories of anyone who has lived a long time after a metastatic recurrence, especially if it happened in the first few years?
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Ladies - This is off topic but I'll bet you might be able to help, My FIL has stage 6 Alzheimers. We got the first call today from his independent living facility that he was wandering. He was trying to get to our house which is several miles away. DH and I are his primary caregivers but have personal care aides at his facility. When he was of sound mind he did an advanced directive and made it clear where he wanted to be placed (the VA Center) and that he wanted no life prolonging care. Should we have the AD on file with the local hospital? Thanks so much in advance. Hugs to all. Jill
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^^^ Oh thanks for chiming in. So the Taxotere isn't given every 2 weeks? Are the SE worse than AC? I'm doing AC every 2 weeks with so far having done 2 of 4 having first 4 days bad then myself until the next round.
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Thanks for the best wishes ladies. Just been confirmed stage 3b but was glad not to have any mets to distant organs. I have decided to name my BC 'supercell' because whatever I throw at it, it comes back again. It starts getting very surreal when you repeat the process so many times.
Sending positive thoughts to everyone just dx, there is always hope and if it returns then there is still lots of hope too x
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I have a question...did anyone here start out with a axillary node large and positive, with a small mass of DCIS, but primary tumor (IDC) unable to locate? What kind of screening, testing (genetic included?) staging, treatment did you receive? Please make your answers as long as you want! I will read every word and respond. Thank you and HAPPY THANKSGIVING everyone.
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FarmerLucy: if you think your FIL may end up at the local hospital, I would have a copy of the AD over there too. It can't hurt to have it there. Sorry to hear that he is wandering.. ((hugs)) glennie
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Thanks Glennie! I appreciate you!
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farmerlucy. I'd keep a copy of the AD with me too. My aunt is in a nursing home and was recently hospitalized. They had my address from 5 years ago on file even though there was an updated one.
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Hi everyone!
My mom was just diagnosed with Stage IV at 53 (Pr+ ER+ HER2-). She only has one met to her liver, which is not affecting liver function at this point, although it is a pretty large one. Her onc is starting her on Femara and Ibrance next week hoping it will shrink or get rid of the met. Does anyone know whether a lower number of mets affects prognosis? She hasn't had her biopsy yet; has anyone gotten this far and then found out that it wasn't cancer after all? I'm trying really hard to stay positive, and could really use some encouragement.
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Hi, Libertylady. Sorry to hear about your mom, and it's awesome that you are here trying to help her. That is strong medicine that her onc is giving her, and there is some thought to the fact that just one metastasis has a better prognosis. It's called oligomestasis if you want to look that up. But there are also ladies on here with widespread mets, that are living a good and length quality of life! Good luck to you and you mother!
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Thanks tomboy. I've been through a few other threads here and am very encouraged by what I've found. I know that Stage IV does not mean an immediate death sentence, and that many women with this diagnosis can, as you say, have good quality and length of life with this disease. My mom is blessed with a great onc who has encouraged her that no one can put an expiration date on her life and that there are many treatment options available. Speaking of treatment, does anyone have any experience with Femara and Ibrance together? I understand that preliminary findings are quite promising, but haven't seen much from patients about their own experience. I would like to have an idea of what my mom might expect with this treatment.
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Libertylady, we are on the thread called Ibrance 2015.
https://community.breastcancer.org/forum/8/topics/...
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Chrissy - Thanks so much for starting a thread for those of us with concerns. I mostly need to vent. I've had a cough for 6 weeks that I haven't been able to shake despite treatment with antibiotics and an inhaler. I went to see my internist today who thinks that it's allergic reactive airway disease and she prescribed inhaled steroids but you know the drill, "because of your history, we'll do a chest xray." She knew that I'd be concerned about the results because the implication was that this could be mets and said that she would get the result stat in 1-2 hours. Well that was much earlier today and now the office is closed and I never heard from her. So you know that my mind is going to dark places. I'm so angry that she didn't call me with the results today. Thanks for letting me share with you folks who understand.
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Toomuch: I'm sorry that they didn't follow up when they said they would. I wish that they realized that giving an accurate eta on when they can get you results is better than saying that they will get them to you ASAP but then not being able to. Best wishes for a clean scan.
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Toomuch, so sorry you've been left to wait and worry. If it's any help to you tonight, my experience has been that it's the bad test outcomes that get the immediate calls, whereas something that's not a concern tends to get shuffled to tomorrow's to-do stack. Let's just hope that's the case, or else she just didn't get the results as quickly as she thought she would, possibly because the day after a holiday weekend turned out to be busier than usual for the x-ray folks. But either way, it seems like making you wait in this kind of situation isn't very considerate or sensitive. (((Hugs))) Deanna
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Ladies I need your help. I had just been told that I have bc grade 2 several hours ago. Of course I am now petrified. My lump is on the right breast about 1.9x1.5cm. I have been having a painful left arm for the last 3 weeks. I was moving some heavy boxes around but did not think that I had felt a sprain. It hurts when I tense the muscles and move it in certain directions. It does not hurt at rest or at night unless I turn wrongly in bed. I have not taken meds for it since I don't feel it unless moved wrongly. So what is racing through my mind is that maybe the cancer has spread to my bones. The last few days I have seemed more achy too throughout, don't know if it is just stress or imagination. So if you can offer any insight , I will greatly appreciate it. Unfortunately wouldn't even see my drs till 12/8. Sigh, patience can be a virtue right about now.
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Kiks1, bone mets are rarely rarely found below the shoulder or the knee. Never say never, but it's extremely rare. Most likely you tweaked a muscle. If it only hurts when you move it a certain way, I'd put lots of money on a muscle.
I'm so sorry about the breast cancer diagnosis. Hang in there.
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Hi Toomuch, just a question for you, are you on one of the AI's, (Arimadex, Femara or Aromasin )? Why I ask is because these meds can have a persistent tickly cough as a SE so if you are taking one of those meds that is very possibly the cause of your cough rather than mets. Try not to stress too much as if it's bad news they would have let you know sooner rather than later.
Kiks1, I have bone mets in my arm so I know exactly what that pain feels like and what you are describing is nothing like that pain. It is possible that your tumor is lying close to a nerve that runs fown your arm and if this is so that achy pain you are having could definitely be from that. Please try not to stress too much, I know that's easy to say but hard to do but to be kind to yourself right now is really important for your peace of mind. I wish you all the best with the journey that is ahead of you.
Love n hugs to you both. Chrissy
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Kiks, I agree with Chrissy that what you're describing doesn't sound like the pain we experience with bone mets. Chances are you've strained a muscle moving those heavy boxes. Anyway, it's very normal when we are first dx'd with bc to start thinking every ache and pain must be related to the bc, and that's it's spreading fast or has already spread to other parts of our body. Try not to go there because stress+imagination actually can make any pain worse until it's proven not to be mets.
So sorry you're dealing with a bc dx, but glad you've found BCO! (((Hugs))) Deanna
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Pajim and Chrissyb, how do you gals have such a generous heart. You give me so much hope and inspiration. Thank you. It is hard to be positive and harder to see my family so affected.
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Dlb823, sorry did not see your post before I replied. Thank you for the reassurances and I will try my bestest to stay positive.
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Kiks it because we know what it's like to feel the fear that we pass on knowledge and reassurance........we call it paying it forward and one day soon you will do the same thing for other new members......just hopefully not in the stage IV forum.
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I had high grade 3, HER2 positive breast cancer three years ago.
I did BMX, chemo and Herceptin but also have a gene mutation, (NBN) that is linked to cancers and a strong maternal history of multiple cancers in addition to breast.
My doctors only follow up is to stay on top of symptoms that appear and persist for more than three weeks. I don't have blood work or any scans.
Did most of those diagnosed with Stage 4 find their reoccurrence through symptoms, and if so, what kinds?
I am always on edge about a reoccurrence or a new cancer. My Mom had five separate cancers before having a sarcoma that spread and killed her.
I don't want to chase false findings on a scan but feel like I should have had one at some point to know I am cancer free.
Any thoughts?
Julieho
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Julie, scans without symptoms are not the standard of care and your onc may have a hard time getting one approved in that scenario. Also, although the risk is small, scans do carry some risk of actually causing a future cancer, especially in some people. So they're best reserved for the times you really need them.
My recurrence absolutely manifested with symptoms, including horrible unexplained aches and pains in my lower back and ribs, plus an illness I couldn't shake, which was totally unlike my usual healthy self, and at that point my tumor markers and other blood work indicated something wasn't right. But some women have absolutely no symptoms and their mets are found quite by accident, -- sometimes with a scan done for an entirely different purpose.
I would say, if you are going to continue to worry that something may have been missed, ask your onc if he would consider ordering a baseline PET or CT scan -- just for the peace of mind it would give you. I suppose you could also say you're having ongoing back or rib pain or something like that, if he can't get it approved without a symptom. Or, as an alternative, perhaps he could at least add a CA27-29 (tumor markers) to your next follow up. If it's totally within normal range, then I think you can rest easy that everything is okay.
Good luck! It's horrible to continue to worry, so I hope if you can be honest with your onc about your fears, he will find some way to reassure you. (((Hugs))) Deanna
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Julie, I agree with dlb that it is reasonable to have some some blood tests (TMs, CMP) and maybe baseline scans to reassure you. Testing and false positives can be stressful, but I guess you have to weigh that against the current stress of wondering. You were stage 1, but do any of your docs think the gene mutation is an argument for not just plugging you into what they usually do, which is nothing unless there are symptoms? Does the gene mutation make radiation riskier for you? Another thing you can do is make sure you get a thorough physical exam, with poking and prodding to check for liver pain, etc.
To answer your question about symptoms: I had intermittent upper abdominal discomfort for many months, but I attributed it to other causes. My docs didn't inquire closely enough about that. My yearly mammogram finally got the diagnosis process going, but only after a stupid "wait six months and check again".
Once you have had cancer, learning to live with the uncertainty is very hard. Especially if you have kids, right? Someone used to tell me that if it did come back, by that time there would be new and better treatments. They were right, because I am now on a newly approved drug that the oncs are quite excited about, and the longer I hang around, the more chance a cure will be found. Try not to lose today worrying about tomorrow. Kiss that baby for me.
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I have a question for those with brain mets. What were your first symptoms? Thank you.
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Hi 39andhip. I don't have brain mets but I do know that not all brain mets cause symptoms and are found at routine follow up. It truly depends on where the brain mets are situated as to what symptoms are present and they can be anything ie loss of balance, constant nausea, continuous headache that is not relieved with normal pain meds, blurred vision and the list goes on.
If you are worried as to your status, it is best to speak with your doc and perhaps ask for a CT.
Love n hugs. Chrissy
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Hi TechtonicShift, I can't help with onc recommendations but I can tell you who I told at stage IV dx. Of course I told my husband and grown children but not my grandchildren at that point. I never told my parents and at their passing they still didn't know. Gradually I told my siblings but that took a few months.
My grandchildren now know but they are no longer small so that's just fine.
When it come to whom to tell and when to tell it really is up to you so if you decide not to say anything then that is jyst fine.
I know you want to be ahead of the game by being prepared but please don't allow that probability of getting to stage IV rob you of the joy of living right now. In reality all any of us have is the moment we are in and projecting the future is really quite a futile exercise.
Love n hugs. Chrissy
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