If you are not Stage IV but have questions, you may post here
Comments
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Psalm-I was seeing a gastro-enterologist for several reaasons. At that stage there was doubt as to whether there could be a link between bowel cancer and BRCA2 (I have the latter, and my Mum died of mets (?) from BC to bowel. I also have diverticular disease, so he was monitoring these conditions. I said that I had had "a tickle" for some time, which was irritating me,but not causing me undue stress. He sent me for a chest X-ray-where a shadow on my left pleura emerged-and subsequent testing showed mets to liver and bones. It possibly is still nothing in your case,but it might be worth seeing about an X-ray.
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Thank you ElaineD, for sharing your experience. I see my Onc on June 26th & have several concerns to discuss with him. My last chest x-ray was pre- surgery in 2009 also had bone scan & that's it. Chest x-ray showed old infection scarring & bone scan showed scoliosis, neither of which I had ever been aware of. Thanks again for your reply & advice
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Hi Steph,
I didnt mean to freak you out...sorry. I had 4 nodes removed in May 2010. We knew I had one node positive at diagnosis in December, it was 6cm at bilat breast MRI and ultrasound. Did chemo first then had mast with the SNB. I only had the one positive node out of 11 removed.
My arm really has been swelling since Feb but got super bad after going on vacation even though I always wore my sleeve when traveling and exercising. I hope it gets better once I shrink the nodes.
Call your onc, cant hurt to have him evaluate you. PM me anytime
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I had no symptoms other than just a sense that something was wrong. I had to literally beg my doctor into getting a PET, otherwise, it would have been next month before I would have had one. He listens to me now when I say something is wrong. Be your own advocate..you know you best.
amy
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kayb - will be thinking of you this morning as you get your MRI done. I am usually an optomist, but will be thinking negative (as in neg. results) for you today. Keep us posted!
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Boobuddy, have you seen a pulmonologist for that cough. That's important enough to get evaluated.
I never had any symptoms either. Cancer is a sneaky bastard.0 -
kayb - HOORAY! So glad that you were able to get results right away AND that they were negative!!
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Boobuddy...you have a lump on your sternum and u are stage 3....you have bone pain. In my opinion those are all reasons to be very concerned and I would be seeing my onc and she would be getting me some scans right away. You need to have that cough checked out too. I never mean to scare people but it is what it is and you need attention. When I was first dx with bone mets in 2006 my only symptom was severe feet pain for 2 weeks. I woke up one day with severe lower back pain and by late that night I lost use of my legs (legs gave out when I went to stand). My hubby took me to ER and the met showed on a regular xray. I was dx with bone mets in my 5th lumbar vertabrae. I had great results with Aromasin and Zometa and my cancer was inactive until recently. I had been having increase pain since december but the onc I had at the time brushed it off. I asked for some scans a few months ago and the onc said i was all clear. I was NOT clear. Knowing my pain was caused by something I found my old onc who actually read the scan results which said I had extensive bone marrow mets in my hips, pelvis, lumbar spine, sacrum and right thigh. Aromasin gave me 5 yrs but was no longer working. I am now on Faslodex and hoping it works as well or better than Aromasin did. I no longer take Zometa as I have osteo necrosis of the jaw. Call your oncologist and if you arent satisfied with what he does....find a new onc. HUgs, Mazy
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Hello Mazy,
It's frightening that an onc would be so ignorant, he should be investigated and lose his license. Thankfully you were persistent & went to a new one. With your recent Dx, did you have fatigue? We who are looking for answers to our complaints /symptoms learn so much when y'all share your stories & paths to Dx, thank you...0 -
Hello friends....
I've been scheduled for a bone scan on June 25th....Thx for the concern & advice....it validates our intuitions when you are so supportive & forthcoming with your own experiences. Never underestimate the powerful impact you have!0 -
Hello friends....
I've been scheduled for a bone scan on June 25th....Thx for the concern & advice....it validates our intuitions when you are so supportive & forthcoming with your own experiences. Never underestimate the powerful impact you have!0 -
Psalm so glad that you have a bone scan scheduled. Please let us know your results and fingers crossed for that result to be negative.
Love n hugs. Chrissy0 -
Good luck on the 25th Psalm. Will be thinking of you and hoping for a good report!
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Hello,
I am looking for advice because I would like to help my neighbor. I found out recently she was diagnosed with Breast Cancer from another neighbor, and she was wanting to "keep it quiet". So I did not go over to talk with her, and just hoped to run into her on the street while walking the dog. This was a little over a month ago. I just ran into her husband and we got to talking. She had a BMX and her doctor told her she would be fine and everything was great, they caught it early. Then three weeks later after the surgery, which was a week ago, she was told that it has spread and she is Stage IV (he did not share where the mets are). Her husband says she is not doing well (totally understand this), but does not want to talk about. I told him I would love to visit with her and if she wanted to talk I could be a good listener, take her to any appointments she may have, you know just be there for her. He said he would let her know.
Since then I have not heard anything. I still run into her husband on the street, he says she isn't doing well at all. I want to just go over there, but do not want to 'intrude'. I really want to help her in some way because I know how much the support from friends and collegues have helped me with my journey with this crappy cancer.
I was wondering if you could advise me as to how I could let her know I am here for her, able to help in any way, etc... without crossing over that line and invading her privacy. I don't want her to feel alone with no one to talk to, since her husband says she doesn't talk to him since he can't understand. But I think he wants me to visit because he seems to be running into me more when I am walking my dog, if that makes sense.
Thank you for any advise.
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Hi Proudmum perhaps you could send her some flowers and a card mentioning your own dx and offering to be a pair of ears for her to use when she needs to get thing of her chest as you do understand the journey. Then it will be up to her to contact you. Oh please place your phone number on the card.
One n hugs. Chrissy0 -
Thank you Chrissy.
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Thanks so much for starting this thread,myself, as a patient,I am meeting other patients at the docs who are all in different stages. I know how I feel and some of it is similar to your feelings in that we just want to be treated normally by our friends and family no matter what stage we are in. Its tough to be sick no matter the stage.
I just wanted to ask if there were any stage IV who were patients with a recurrence or if they were stage IV to begin? I read so many stories of women who got a recurrence even 20 yrs later. I feel a little afraid because I am so allergic to the Arimi and those drugs and cant take those and worry without it I might have a recurrence. Wish you well and speedy recovery. I think we all anxious to get thru treatment and get our "normal" back as much as is possible. Hugs((()))
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Proud Mom-she must have had several messages via her husband that you are available, but has still declined contact. Please respect this decision from her. At stage 1V we all have to make this type of decision-and whilst your offers are kind, she sounds as if she doesn't need/want input at the moment. Please let her do things at her own speed-she may need your help soon-or never. There is no rhyme nor reason to these type of decisions-but she knows best what suits her. I too have said very little to my neighbours. I'm disappointed that her husband appears to be trying to involve you against his wife's wishes-should he need support, there will be organisations which will help him-I would be furious if my hubby was trying to involve people against my wishes-sorry, this is not what you want to hear, as I suspect that you are desperate to be included-but this just doesn't feel the right way forward. I hope it all works out according to her wishes.
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I have to agree with Elaine on this one. She knows you are there if she needs you.
I havnen't told anyone other than my family about my DX, I don't want people to know, they get all weird about it. Both of my parents have been more than happy to tell everyone for me. My dad has brought 2 different women over to talk to me because "they are in the same boat" he says. One had stage 0 and a lumpectomy, shes done. The other is doing treatments right now, but she is stage 1 and a lumpectomy also. The are both much older than me, and total strangers to me.
I have no idea what to talk to them about. I have told my dad not to ever do that to me again. I can't help them and they can't understand what I'm dealing with even if I did feel comfortable talking about it to them.
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This forum is support enough for me. I suspect your neighbor is more comfortable alone with her life and her thoughts. Her husband needs the comfort of others, so be there for him.
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I suspect no one can really answer this question, but I was wondering how long I may have between stage IIIC and IV.... had less than one year from IIB to IIIC (and wonder if I was actually IIIC to begin with as my scans seem to be false negatives - no nodes seen on PET scan before BMX, but lots of nodes positive at surgery). Had lumpectomy + chemo, tried tamoxifen, couldn't do it. Recurrence 6 months after end of chemo, then did BMX, tried tamoxifen again, just can't do it. Declined rads because statistically they seem to improve local recurrence but not overall survival and risks were higher than I could agree to. So I know that my choices have probably put me at higher risk for progressing, I was just wondering if anyone had any thoughts - and I know no one has a crystal ball. Thanks.
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Hi Layla I had a recurrence five years after initial diagnosis. I had a very bad reaction to chemo and my onc refused to give me more so I was put on Tamoxifen. It happens that I am allergic to that so I had no treatment for four and a half years.
When I was dx'd stage IV I was given radiation for pain and to kill of the cancer and was then put on Arimidex. I stayed on that for fifteen months but I was terribly depressed and could hardly move because of bone and joint pain. My onc changed me to Femara and I started to feel like a new woman very quickly. I have now been on Femara for twenty months, feeling well and still controlling the cancer. Time can be your friend or your enemy, you can live your life well and enjoy it or you can give into the fear and allow it to spoil your life. Some how I always knew it would come back but I never allowed it to stop me from living and enjoying each and every day...... I still don't.
Please do yourself a favor and live day to day with as much joy and vivre as possible and don't give into the fear. You will, no matter what, handle / cope with what ever comes your way but there is no crystal ball telling us what that is to be.
Love n hugs. Chrissy0 -
Linda, given your bad relationship with tamox, hasn't any doc suggested an ooph?
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Thank you for your advise. It is very much appreciated.
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ProudMom,
I agree with the others - she knows that you are there. Have you mentioned these boards to her husband? The people she needs to talk to are other women who know what she is going through. Honestly, if he's running into you on purpose, I think he's the one who needs to talk. So you could just talk to him, ask him how he's doing, etc. Giving him some sort of support might help him support her better, you know? (Of course, you don't want to seem inappropriate, but I know that you won't do that.)
I am in a similar situation - several friends have put me in touch with a mutual friend who was diagnosed Stage IV from the get-go. Our friends all think that we are in the same boat, but I know that isn't true at all. I got some great advice on how to approach the situation from the women on these boards and and I honestly think I did it right. I mostly correspond with her through her husband (she's had a rough first few months), but he said that she feels really supported by me. Anyway, the ladies here are giving you good advice.
And stormynyte, I'm so sorry about what your dad did. He was probably trying to help, but dear lord.
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Yes I have told her husband about these boards in hopes that one or both of them might come here, along with a few different support groups I know of in town, including a seperate one for caregivers.
Thank you all for your input, it really helped.
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Hi Linda,
Good to "see" you here! I think you're asking the million dollar question. No one knows, time wise, the rate of progression. Also bear in mind that progression does not accelerate numerically through each stage, although by stage III there's only one way to go. I was IIB after surgery and less than 3 months later, stage IV. Never saw stage III but suspect my bone met was there all along and if you remember my story, discovered by accident. No pain or any other symptoms. I have been fortunate in that I have tolerated Arimidex, Aredia and rads to my bone met very well. Love my one step implants too and have carried on with my life very normally save for too many medical appointments. Recently released from pt since my frozen shoulder has almost completely disappeared and my last PET was clear so I get a 6 month pass from seeing my mo. I know it's not easy but try not to focus on the possibility of progression. Treat yourself well and enjoy each day. I know my good run won't last forever but I plan to enjoy it while I can.
Caryn0 -
Psalm, I had been more tired than usual for quite some time...maybe 6 months or so. I was in alot of pain and it was wearing me out emotionally as well as physically. The onc who didnt give a damn told me that I was getting older, probly did too much, I was fine cause my labs were ok, maybe I needed to have physical therapy, and on and on and on. He was an idiot !!!!! I needed attention, I needed treatment and no matter what I said..he brushed me off. You are your own best advocate and always listen to what your body is trying to tell you. I pray for great results on the 25th.
Layla, I was diagnosed stage 2B ILC and then my first bone met was diagnosed 3yr and 9 mo later. I have new mets now and it had been 5 yr and 5 mo since the last one til this was found. Do you know what percentage ER positive you were? I am and have always been 90% ER pos.
To anyone who is fearful that cancer may be sneaking back in...I know you have probly heard this a hundred times. But honestly...If your symptoms have lasted 2 weeks or more or if they are severe...then you need checked out by your onc. Sometimes symptoms gradually worsen and you dont pay attention at first. When you start thinking that you should be checked then you probly do. If you are not satisfied with what your onc does or says...tell him so and ask til you are satisfied. If you dont feel your onc is right...get another opinion. Its your life they have in their hands and you need to do what you can to make sure they pay attention. HUgs, Mazy
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Thanks Mazy for your reply. A friend of mine that was dxed Oct 2010 w/ triple negative IDC had the "you need to walk/exercise more, get physical therapy for that shoulder pain" speech from her onc who is also my onc, she went to another facility entirely & has learned she has bone/liver metastases. I was honestly surprised when he set up my bone scan so quickly with my just one phone call. Do the oncs base the possibility of scans/tests on what our level of complaints are? Did I say something in my symptoms that sent up a red flag to him? What is the deciding factor on us getting further tests scheduled or just being "reassured" ? This is overwhelming
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Thank all of you stage IV for your help. I have a question about Abraxane and missing treatment due to low WBC. I am stage IIIb with skin mets. ER+ PR+ Her2+.
I have had 10 Abraxane chemo treatments and I am on Herceptin with Tykerb and a couple of other drugs.
My HBG went to 6 and I had to have blood transfusion 3 units after 2 weeks of chemo.
I have had to miss a week every 3rd week because of low WBC. Now my Onc has changed me to Doxil. He said that the tumor has not shrunk but he thought the nodes under my arm is less swollen. My question is would my agressive IDC/ILC bc be getting a foothold when I missed a treatment? At one point my Onc had said the tumor had shrunk. I have 3 tumors but only one is large enough for him to feel.
Thanks for all you do for us newbies.
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