If you are not Stage IV but have questions, you may post here
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I had BC in July 2011, double mastectomy, chemo Sept-Dec, Tomoxifen since Dec... dx'd with central apnea Mar 2012, then inflammatory tenosynovitis, then started peeing 4-5L a day, now up to 7L... endocrinonologist is doing tests, looks like Diabetes Insipidus and that means pituitary tumor is a liklihood, another is mets mimicking the hormones of the pituitary. I'm really struggling with the feelings about losing my belief I was 'cured' let alone facing that a mets framework would mean facing that its about time, not expecting cure. I am still holding on to all possibilities it could be something else... chemo damage, sarcoidosis, anything other than mets. I know it could be an adenoma but only 1 in 1000 of those become clinically active... I know where the odds are. Its hard.
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Hi 1210donna, there certainly sounds like you have a whole lot going on right now. Loosing that 'cured' belief is really hard and the consequences should it be turn out to be mets very hard to accept in the first instant and yes you are right, the 'cured' side of things no longer apply and it's all about time and quality of life.......scary.
Which ever scenario it turns out to be, you are obviously in for another round of heavy treatment................here's hoping that what ever is causing the problem can be treated and sorted quickly for you. If you need to talk please PM me as I'm happy to chat.
Love n hugs. Chrissy0 -
1210donna - sorry that you have so much worry going on. Of course hoping for nothing but the best case scenario for you. Know that we are here for you no matter what the outcome.
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My friend Ceciles liver is failing
how long do you think she may have? Could another chemo help?
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lovely to meet you Chrissy. I took around a year to believe my cancer wouldn't come back... some people can just believe it, but I live with primary immune deficiencies so knew I might get unlucky, then was central apnea and inflammatory tenosynovitis, then the Diabetes Insipidus, I still got on with doing everything i ever wanted... moved house, got cats, became an art teacher, joined a choir, the love with my husband was even more wonderful than before cancer. So I was never a healthy person who got cancer, I was someone who knew illness well, who was lucky to get to my 40s, but I still believed in the positivity of my oncologist and I'm so joie de vivre, I believed that I could almost Mary Poppins away any spectre of its return. I'm very pollyanna, and i love that, and I was that all through chemo, through my whole life, and if this is mets, I'll be that through that too. meeting folks who can't living in cureville is good for me so I can get over mourning the loss of a cure I probably never actually had.
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lovely to meet you barsco. It is very generous of you women to chat with newbies like me. I know you've all been where I am just as I was a seasoned chemo traveller when newbies started chemo once I was further on in my rounds and I remember their anxiety and how alien it was for them, as it had been for me. I spent my life with primary immune deficiencies but always lived my life to the full in between fairly constant treatment for at least my first 26 years and then things got rather never ending since 2009 with the breast cancer dress rehearsal in 2011. Hope this is not my finale. But I'm being really creative about it, we have a box room... unused, and I'm making it a Donna space for my special things, my favorite clothes, a dresser with my things there so my hubby can still enter 'my space' and spend time with me. I see my body as 'thowing me out'... like its giving me an eviction notice... and I say, ok, so I'm losing my house, so where will my spirit live... and I'm making places for my spirit to live on for all who love me and can still visit me... call it crazy but it gives me peace. I'm still cheery, finding silliness and laughter and snuggles every day. I think primary immune deficiencies trained me well that I didn't own this body, I was renting it. They never let me be boss for too long... I hated that, but now I see it didn't me favors, spiritually. Thanks for listening.
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Hi Jan-m, so sorry to hear about the state of Ceciles liver, unfortuately liver failure is very serious. Her time may not be long and truly, another chemo would only make things a whole lot worse as her liver is in no condition to process it.
I cannot say exactly how long so spend what time you can with her keeping in mind that each time could be your last with her.
Love n hugs. Chrissy
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Donna, the thing with BC is that even though we hear talk about being cured, we are never really 'cured' as it has a way of popping up again even thirty years later. I really think that people who think 'cured' need to know the word should be 'remission' but that the 'remission' may last the rest of their lives.
For myself, I always knew it would come back so was sort of prepared when it did.......my famiy took that news far worse than I did, but you do learn to live with it and life can still be sweet.
Love n hugs. Chrissy
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jan-m So sorry to hear that your friend is not doing well. Chrissy has some wise words above. Be present for your friend, help her to be comfortable and try to make those final days together as pleasant as the situation allows.
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Thank you crissyb and barsco for your kindness and wise words!! Cecile almost seems relieved, she has been all about quality not quantity, she will go out the way she has wanted! The rest of her very large family are all coming back in the next couple of days and I feel like I should step aside and let them be there for her. I will try and have a last moment with her alone today if possible and then fade into the background but still be there for her and her family if they need me in any way! We have been friends for 13 years and were diagnosed 1 week apart.. it is going to take her soon and I guess I will see what the future will bring me.. cancer sucks!!
I will miss her very much.. but we both know we will see each other again one day!
Thank you again and
Thank you for being here for me!!
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1210Donna, thank you for the reminder that we don't own our bodies - we are renting them! You brought a smile to my face and my heart as I contemplated that!
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JanM, you are very welcome and remember we are always here for you when ever you need us.
Love n hugs. Chrissy
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donna - I like what you are doing to create your space so that your spirit can live on and your loved ones will have a place to visit your obviously very generous and loving spirit. I am glad that you are able to find the good in every day and remain cheery. It is often easy to "wallow", which is ok for short stints, but it is so important to enjoy life while we have it.
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JanM - Cecile seems to be at peace knowing that she is nearing her final days. How wonderful that she will have her family and yourself at her side as she makes the transition. You are a wonderful friend to have. And like chrissy said, we are here for you whenever you need us to be.
((hugs))
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Hello,
I am not sure where to go to ask these questions. I think that this may be the place but please direct me otherwise. I was diagnosed initially at stage 0 last year and that lasted only until the path report from the lumpectomy. This past week , after finally recoverying from 2 surgeries, chemo, and radiation and their side effects, I went for a check up and a new cancerous mass was found (a 2cm palpable mass) thought to be a lymph node On the Other Side. The path report is not complete but it seems that it is the same type, I was told informally - waitng for complete details. I had a pet scan today and the report on that is coming tomorrow. I am told that the mass was likely there from the beginning OR it might be a new primary and that the pet scan will tell us if it has spread elsewhere. All fo this is very confusing. Is this metastatic disease? I don't know. May I post in the stage iv forums? Not sure where I am. Any counsel.
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Hi HVV you are in exactly the right place to ask your questions. Should your scans come back with nothing other than the one you know about then to my understanding you will have had a recurrence if the scan results show the cancer to be in one of your organs or bones then you will be stage IV.
As for posting in the stage IV forums it is preferred that unless you are dx stage IV that you don't but feel free to read. You can post your questions here anytime, that's what this thread is for. Should your scans show you are stage IV then, by all means you will be very welcome in the stage IV threads.
Hope this helps.
Love n hugs. Chrissy
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HVV - Here's hoping that you won't be posting in the stage iv thread. Best of luck for good results from the scans.
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Not sure how active this thread is but I am desperatley in need of advise. I had total mastectomy 6 years ago and was Stage 11b . HER neg. ER pos. Had chemo 8 rounds ACT. had such terrible neuropathy and bilateral drop feet. All well until this past 6 weeks. Arm and shoulder pain plus neuropathy in right hand. CT pos for lesion under right collar bone and a 1 cm suspect lesion in left upper lung. Have a biopsy sheduled next week of under collar bone area and have to schedule lung spec appointment. I am horrified that after 6 years this has risen its ugly head again. I took the hormone blockers for only 18 months as athritis SE were crippling me. Now I have an unsure future. I really do not want more chemo. The Neulasta shots caused me so much bone pain in my legs. I survived on Vicodin. ( Never again I said). So maybe radiation ( none before) Had just one lymph node positive before w/22 removed. Has much happend in 6 years w/ne drugs? is there much more to offer. I am 65 and have 2 wonderful young grandchildren . I moved to the Seattle area 8 months ago from Fl to be closer to them.
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Oh Grammy, I sure hope for you that it hasn't reared its ugly head again but on the treatment side of things there are always new drugs coming on the market.
As a stage IV the treatment is not as aggressive as first time around, it is designed to give as much quality of life as possible while controlling the cancer. To that end, chemos are administered at a lower dose so the SE are not quite as harsh.
This thread is always monitored and stays pretty active so feel free to post any time.
Good luck with the biopsies
Love n hugs. Chrissy
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Hello Chrissy and Barsco,
The pet scan showed nothing in other organs but other places in right breast/axilla - more details on Monday. Is that metastatic? or a Recurrence? I thought they were the same thing. Now not sure.
Grateful of course but not sure exactly where I am. MRI tomorrow for more details and then wednesday meeting to reveal more.
Thank you all. I think I am still inthe right place. Right?
HVV
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HVV, yes you are still in the right place. Anything in the breast /axilla area is recurrence anything outside that area, ie lung, liver, brain, bone or any other soft tissue area of the body is stage IV and definiftely not the same thing.
Right now for you can be so confusing while you are in the diagnotic stage but I'm sure, that once your doc are through with the testing you will get some definitive answers pretty quick.
Still hoping that if it is something that is recurrence not stage IV.
Love n hugs. Chrissy
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Grammy - sorry that you are once again dealing with so much anxiety. Best of luck with the biopsies and as Chrissy mentioned, there are many tx out there to try. Keep us posted on how you are doing. Hoping for the best possible outcome for you.
HVV - glad to hear that organs are clear. Keep us updated on results as you go forward.
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This is my first time posting. My mom was diagnosed with breast cancer stage 1V in April and I am scared. She had two chemo treatments of taxotere and has been in the hospital for eight days now with pneumonia. The pneumonia has gotten worse and worse everyday until yesterday she was put in MICU on a vent. The dr last night told me they put her on the vent because it was becoming too much of a strain on her heart not being able to breathe. She said moms lungs are waterlogged but this might only be for a few days. They are taking another chest X-ray today to see if her lungs are getting any better. I was wondering if anyone has been through this and came out of it okay. I am so scared she looks so terrible.
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Hi Autumnbreeze so sorry to hear about your mom and I can understand your fear for her. Her docs are doing what is needed in order to give your mom the best chance of recovery possible. All treatments can be rough on our hearts but with the added stress of pneumonia your moms would have been working overtime.
There have been people who have had much worse and pulled through and there have been people with much less who have succumbed ...........no one can say for sure what your moms outcome will be but be assured she is being given the best chance possible.
There is a forum for care givers and family of those with BC.......if you would like to post there, there are many who will be able to give you some added support.
Hoping your mom does well.
Love n hugs. Chrissy0 -
Hi all, I hope we are all ok.
Does anyone have experience with muga scans? My mum has one next week and myself and my 6 month old baby were hoping to visit that evening....will it be ok if she doesn't hold the baby? Or shuld we stay well away for 24 hours? i am hoping that to sit baby on the other side of the room would be ok....Just wondered what's advice you had all been given.
Love to all Xx0 -
Hi Papillon, a MUGA is nuclear medicine so your mom will be radioactive for twenty four hours so not a good idea for her to hold baby. I would think the other side of the room would be okay as all things I've read say 'contact'. I would suggest you give the imaging place a call and ask the question of them just to be sure. It doesn't have to be the one your mom is going to just an imaging place.
Love n hugs. Chrissy0 -
Thanks Chrissy.
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I'm going in to see my doctor tomorrow for shoulder pain. I called my MO yesterday and since she couldn't see me until Friday, she recommended I try to see my PCP earlier and get an x-ray. I was glad she was responsive, but her urgency sort of made me feel even more nervous.
I've had shoulder issues on both sides, sort of bouncing back and forth, so I had decided it was muscular a few months back. Then about two weeks ago, my shoulder - mostly the shoulder blade but radiating down the arm a bit - really started feeling uncomfortable. Last Monday and Tuesday, even just sitting, I could feel the pain. Naproxen helped marginally. It has started to let up, but in the evening when I'm sitting on the couch, it creeps back. And over the weekend my boyfriend was trying to rub my shoulders to see if it helped, and when he hit a point on my shoulder blade, the pain was pretty bad.
Hoping, hoping that it's rotator cuff or something else.
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Hi Rachel, so sorry that your shoulder pain has become worrisome for you to the point you need to get it checked out.......be assured you are doing the right thing and so is your MO in suggesting you see your PCP ASAP. I know her reaction has scared you but I'm sure she has taken the view that if the pain was bad enough for you to contact her it needs to be checked quickly.
Keeping my fingers crossed that it's something other than a met and please let me know how you get on.
Love n hugs. Chrissy
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rachelvk - hope the xray shows nothing of great concern. Fingers crossed for you.
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