Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

If you are not Stage IV but have questions, you may post here

1…7980828485…173

Comments

  • minustwo
    minustwo Member Posts: 13,402
    edited June 2014

    Hindsfeet - just have to jump in and agree - yes do get a 3rd opinion whatever the Bisher Clinic tells you.  You owe it to yourself to at least go to a teaching hospital & hopefully to one on the link that pajim posted.  Good luck moving forward.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited June 2014

    Hi Chrissyb & kathec, an update.  CT scan came back clear (YaY!). The spot noticed on my liver during the first CT Scan was confirmed to be a hemangioma.  Spoke further with the doctor and surgery is scheduled for 7/11.   My DX will be given after final pathlogoy report after surgery as the Dr. indicated information might change and also because I have been labled with an Occut Primary Breast Cancer, meaning there is no tumor to be found anywhere which was confirmed through MRI.

    Again, I feel shy about posting on Stage IV so glad I found BCO and the support community.  

    Thanks again all for the support. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited June 2014

    Thanks. Someone gave me a oncologist name from Los Angeles, whom I plan to contact for a third opinion. My oncologist back home even suggested I go for another opinion at a major breast hospital. She said there was one in Los Angeles. I'm not jumping in Bicher Clinic with both feet. I'm asking a lot of questions. I am also asking them if they would be open to me seeing another oncologist along with the heat treatment. I do want to move quickly ahead with Herceptin. I do not want my lung zapped with heat until I see a lung specialist. The swollen lymph nodes are next to the heart and esophagus. 

    Funny, my oncologist gave me the news of diagnosis Friday 13th, June. The news is still pretty raw.

    I have lurked stage iv bone mets thread. I have a lot more questions than answers. I should just jump in, but not sure yet I belong there. I feel like it is a private group. I have not yet emotionally accepted the fact I am stage IV. I still feel like a early stage cancer member.

     

      

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Ladyb I am so happy that you have a good report........as you say, YAY!!!!  Hopefully the report won't change after surgery so I will be keeping my fingers crossed for you.  Yes this thread is in the stage IV forum but it's probably not really categorised as a stage IV thread.......it's sort of a mix but feel free to post here anytime you like.  As it says at the top, if you have questions or concerns and that applies to everyone.

    Waiting with anticipation for a good result.

    Love n hugs.     Chrissy.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Hindsfeet, I understand completely that feeling.........it's almost like denial but not.........it's hard to accept that this thing is happening to you, how could it happen to you?, what could you have done to prevent this........yes all these questions and more can go through your head......don't worry, it's all normal and at some point something will click and you will be able to say you are definitely stage IV and join in with ease any thread in the stage IV forum.

    I'm so glad you are exploring with many question all your options for treatment........I think it is so important to be able to say to ourselves that you have done your homework and are satisfied with what you choose.  What ever you choose we will be where to support you so good luck with it all.

    Love n hugs.     Chrissy

  • clarrn
    clarrn Member Posts: 160
    edited June 2014

    Quick question:  My infusion Centre had a bell that people ring when they complete chemo.   I worry about how it effects those who know they  probably won't get to ring it.  Anyone have an opinion?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Clarrn I would wish them well and hope they never need to be back in that place. 

    Love n hugs.    Chrissy

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2014


    Clarrn -  It is the same at my cancer center and I often hear the bell and clapping it rings.  I'm in a drug trial now but I know more chemo is a possibility for me if results are not positive.  I'm stage IV so at some point yes it may never be done.  I have met others who will never be done chemo (while I was doing my chemo) but I didn't see them anything but happy for others who did finish nor would I feel anything but happy for them also.  Some may feel different but I would think that it wouldn't be the norm.  If anything I want to inspire people and because of what they see in me they never give up... I'm not!

    Cathy

  • mary625
    mary625 Member Posts: 154
    edited June 2014

    Couple of questions about Stage IV...First, I am seeing articles about women working with Stage IV and I think that's great for those who want to.  I worked during all treatment except 4 weeks after mastectomy, and in hindsight, I think it was a mistake.  If I'm ever diagnosed with Stage IV, I'd like to feel that I don't need to work so that when I feel good, I can do something other than work.  Have any of you had problems with disability (private insurance company) claims?

    Second, what should I be looking for in terms of bone pain?  I am having some roving pain in legs and sometimes arms when I am sitting down or resting, but at the same time, I've been overly active lately.  However, I am a little worried about it.  Seeing oncologist for regular visit next week.

    Thanks.  

  • Tomboy
    Tomboy Member Posts: 2,700
    edited June 2014

    mary625, good way to describe them, 'roving pains' , i am having them too, and i do suspect it is from the femara. are you trying to get disability? i was thinking about it, talked to one of those online lawyers, he told me to stress the depression, because it is harder to prove or disprove. i am turning 55 in the fall, and supposedly it is easier to get after that, especially if you can no longer perform the work you usually do. for me, i was in construction, and since tx, have aquirred lymphedema, and much more frail bones, and am not supposed to pick up anything heavier than 10 lbs..... 

    women that are/have become stage 4, have what they call ' compassionate allowance', where it is not denied, and happens very quickly, i heard three months or less. hope that helps, for me, saying i am a mental case(because of bc) does not fit well with who i think i am! even if i am! will you let me know what the doc says about roving pains? hope all goes very well, next week for you.

  • julieho
    julieho Member Posts: 164
    edited June 2014

    hi

    I have a question about follow up after treatment. 

    I had grade 3, HER2+, IDC with no lymph involvement. I had a BMX, chemo and herceptin. I have a gene mutation NBN that gives me a higher risk of several kinds of cancer and a huge maternal family history of breast, 5 woman on mothers side including my mom all died and two had colon and one died. 

    I was told that they don't do scans to get a baseline after treatment that everything is gone.  The reason being that with metastatic cancer they have found detecting it earlier on scans doesn't change the outcome...it will either respond to treatment or it won't.  And they end up tracking down things that show up that aren't anything. 

    I sort of get this but I also don't.  My Mom had 5 different, unique cancers before one metastisized.  I also feel like from a treatment efficacy point of view they should scan us afterwards to see if in fact all the chemo did something.

    Anyway sorry this got so long but I would love to hear from others about this. 

    Thanks

    Julie

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Hi Mary, I can't comment on the disability insurance thing as here in Australia disability comes from the Government pensions system and if your doc signs off that you are stage IV you can apply for disability and be pretty much guaranteed acceptance.

    As for the 'roving leg and arm pain' that you are feeling, I would say it's more likely to be from the Femara than mets but I would definitely mention it to you doc when you see him next week.  

    Good luck!

    Love n hugs.    Chrissy

  • minustwo
    minustwo Member Posts: 13,402
    edited June 2014

    julieho - When I found the recurrence & was diagnosed by/ULS, I had MRI & PET/CT before starting neo-adjuvent chemo.  Had both again after chemo & before planned ALND surgery both as a surgery guidance & evaluation.  Found there was not PFC w/tumors, so had more & different chemo after surgery.  Then had rads.  Still on Herception through September.  My Mo believe in scans every 6 months after treatment.  However he is retiring the end of the year and did say I might have a problem convincing other docs to do either MRI or Pet/CT.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Hi Julie, after the first line treatment is complete the docs presume all is clear as that is what the first line treatment is for.  They are loathe to scan as too much scanning is bad as all that radiation is exposing us to the probability of the radiation causing some form of cancer as well.  Most docs do bloods as a least invasive form of watching or they wait until you present with symptoms that need further investigation.

    I know with your family history and the fact that you have the gene mutation NBN you would be on edge and that is understandable and because of this I'm sure your docs will be keeping a close eye on you.  Not doing scans does not mean they are not doing this.

    Hope you can move on and learn to live your life without this fear riding on your shoulders.

    Love n hugs.   Chrissy

  • julieho
    julieho Member Posts: 164
    edited June 2014

    Chrissy

    Wow it was so helpful hearing this from you.  

    I think I needed to hear from the women who have actual experience with this that what they are doing does in fact make sense. 

    I so appreciate your quick response and that you created a thread for women who seek advice from other women who have had experience with metastatic cancer.

    Your words help a great deal. 

    I hope you are doing well.

    Take care and thank you,

    Julie

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2014


    Hi Ladies,  I just applied for the Canada Pension Plan Disability.  No decision yet but it has been close to 6 weeks since I applied but less than a month since the doctors forms were sent in. I am stage IV and was also told that here in Canada it's pretty much guaranteed and put through faster than the normal 4 to 6 months.  I'd say if you find it hard to work it wouldn't hurt to try. 

    Cathy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Cathy I have been on a disability pension for five years.  When I was dx I ask my doc if I would qualify and he sId yes, get the forms and he would fill them out.  Once they were lodged it was only about four weeks before I got my first payment which was back dated to the day I lodged the forms.

    Glad you will qualify for yours as it really does take a weight off your shoulders knowing you have some money coming in.  Good luck with it all!

    Love n hugs.     Chrissy

  • carpe_diem
    carpe_diem Member Posts: 599
    edited June 2014

    In the US Compassionate Allowance applies to stage IV breast cancer and a bunch of other conditions and guarantees you a rapid response. I got my first check in less than a month. It's not necessarily automatic, but I've never heard of anyone being turned down. Your benefits start five months after diagnosis or stopping work, whichever is later, and then you receive Medicare after two years of benefits. 

    The number of work credits needed for disability benefits depends on your age when you become disabled. Generally you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled. However, younger workers may qualify with fewer credits.

    I have heard of people being asked to show that they are still disabled after about five years, but most of us would be thrilled to have that problem.

  • Momine
    Momine Member Posts: 2,845
    edited June 2014

    Hindsfeet, from what I can see Dr. Bicher does not have the greatest reputation. There are reputable cancer treatment centers that do hyperthermia, the Mayo Clinic, for example. I agree with the others that hope never dies and you need to find an onc who will help you.

  • Tomboy
    Tomboy Member Posts: 2,700
    edited June 2014

    hi carpe diem, thanks for clearing that up! it is funny tho, cause when i went to look at the compassionate allowance page, it must be outdated. because it also said there that women who have more than ten nodes positive would qualify. because of some other questions i had asked earlier,and i really don't remember where, i had read that it was only 9 short years ago that they changed the staging for bc, that what is now considered st 3c, was staged at 4 then. and i just don't know if s.s has quite caught up. so when they threw everything at me, they said it was still with curative intent. even if it did leave harsh side effects, but: they didnt throw anything at me harder than they did lower stage ladies! (TCH). in some of my clinic notes, old bs accused me of not understanding the gravity of my situation! reaallly!?! i did, but chose to be as cheerful as possible. and since they did no other scans or mri's after, then how do they know if certain lit up places, like lung nodules, right renal uptake, etc, were "incidentalomas" or actual tiny mets? at that point, chemo would take care of them,right? so, if they are gone, when i do the follow-up pet/ct scan i am supposed to do soon, does that mean they were mets, or just gone? last breast mri showed "non mass enhancement associated with architectural distortion at lumpy site w/ the most pronounced area of enhancement surrounds a 13mm oval fat lobule, no earlier post-operative mri to compare to/with." does that mean my old stupid b.surgeon fell down on the job,not ordering a mri of them, in two whole years/ for someone who is high risk? xxxtremely dense tissue, and no fat lobules before treatment! she was the same bs, who completely forgot to even look at my other breast, for a whole year! at which time she scared me and bullied me into doing nine biopsies,because of microcalcifications there! i told her they were there since the beginning, on the notes and films from when the cancer was first discovered, the notes which they refused, 'because they would do all the imaging themselves' and she was supposed to to mammos of both, and never did, cause she had wanted to go straight to mri, while waiting for films to show up, ...and she never did that mammo on the left, for a whole year. and when i told her microcalcifications were clearly noted at the beginning, she said if i was going to fight with her, she would no longer be my doctor....it was horrible. anyway, i am wondering what other tests, procedures she may have missed, cause they wanted so badly for me not to be anything more than lllc...

  • carpe_diem
    carpe_diem Member Posts: 599
    edited June 2014

    kathec,

    The list for Compassionate Allowance includes "breast cancer - with distant metastases or inoperable or unresectable," which covers some stage III, especially IIIc. My husband's cousin was recently approved with stage III ovarian and stage III bc.

    It sounds like you've had a rough time with your doctor, but I hope you can find a better fit, someone who sees you as proactive rather than interfering. I've fired several doctors before and during my treatment. There are a lot of docs with god complexes and it's best to just move on if you have other options. I've heard the theory that it's best to wait for symptoms, but there ought to be a distinction between early stage and more advanced cases.

  • darkestb4dawn
    darkestb4dawn Member Posts: 4
    edited June 2014

    Hi Everyone, 

    First of all, I'd like to thank the wonderful ladies who contribute to this thread- it's such a kind and helpful thing to do! 


     I'm here for my mom- we're  looking for opinions and advice on what treatment she should try next- chemo, and if so what kind, or another hormonal. To avoid an endless post (which I'm prone to!) I will break this down into a timeline, which will give more info than the profile.

    May 2012- Mom, age 65- Dxed Stage IV ER/PR+ HER-. Bilateral malignant pleural effusions, mets to lungs/pleura, bones, adrenal gland, spleen and many nodes. 

    June 2012-Started Femara and recieved Pleurx catheter- ended up with pneumothorax and trapped lung.

    August 2012-Regression on scan, adrenal nodule gone, nodes shrinking, pleural effusions diminishing.

    Dec 2012- Pleurx catheter removed!! :)

    Declared stable- feeling great with no sx!

    Sept 2013- Tumour markers rising- CA127 & CEA both.

    Dec 2013- Both markers still rising, clear scan.

    March 2014- Liver mets appeared on scan- 3 small spots, largest 13mm. No change elsewhere. Faslodex added to tx- still NO sx!

    April-May- CA127 rising slowly, but CEA dropped from 21 to 7.

    June- After 3 Faslodex injections, liver mets increased slightly in size, new spot appeared. Tumour markers both dropped though. Dr. stops Faslodex and Femara, suggests clinical trial of Halaven.

    My mom is 68 now, still working full-time and very active, full of energy and enthusiasm. She makes a good salary but will probably not be able to stay long in her house if she retires. Prefers to keep her cancer dx fairly private- the thought of losing her hair is upsetting. Most upsetting is loss of vitality, feeling tired and nauseous, being  unable to live the lifestyle she loves. 

    Given all this, she is very afraid of chemo, BUT acknowledges that she doesn't want to give the liver mets too much time to progress. She has no symptoms right now.

    Our choices are the Halaven trial, Xeloda ( which onc mentioned a few months ago as a "down the road" tx) or another hormonal. Femara did work quickly and well and kept mom stable for at least 18 months. I've thought that the Faslodex might just be taking time to kick in, but progression isn't a good sign. Some questions I have are:

    Is Halaven too "strong" a chemo to start, and could it decrease the effectiveness of subsequent chemos? I wonder if that is one reason for the trial.

    Is Xeloda a good first line chemo, or are there gentler or better ones?

    Once one aromatase inhibitor fails, is another likely to work?

    Is a chemo more likely to work, hence the onc's suggestion, or would it simply work more quickly if it was effective?

    Any thoughts or advice is appreciated. Thank you all so much!






     



  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Hi DarkestB4dawn, The best advice I can give you is look up both medications and check out and compare their SE.  I know a few women on Xeloda and they are having a very good response with it but I'm sorry I haven't heard much about Halaven.  I would also ask her onc why not another AI at this time, he may just think one of the chemo may well be more effective right now.

    Sorry I couldn't be more help but I hope your mom is happy with her decision and what ever that is, it works well for her.

    Love n hugs.   Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    OMG Kath!!  What an incompetent doc!  I do hope with all my heart that you have fired her and found someone that you can talk with and come to an agreement with rather than being told.  I don't know anything about your disability over there but I do hope you can get everything sorted.

    Love n hugs.   Chrissy

  • darkestb4dawn
    darkestb4dawn Member Posts: 4
    edited June 2014

    Thank you for your reply, Chrissy! I'll definitely compare the two chemos- research is always good. I agree that mom's onc is suggesting chemo due to slight progression of the liver mets. My understanding is that chemo can work very quickly, that's probably what he is looking at. Have a great day- I love your avatar btw! 


  • Tomboy
    Tomboy Member Posts: 2,700
    edited June 2014

    thanks chrissyb. i did finally request a new breast surgeon at my treatment center. supposedly, the one i had is a "darling" of them, and i guess i am not! i have been told that i ask too many questions, so i am guessing that i am just the squeaky wheel, and i am not getting greased! (no satisfactory answers). It really is getting to the point where i wonder if i should change facilities altogether. i wanted to a year ago, and just felt like i couldn't muster the energy to do so. i am trying to finish up all of my follow up testing, and then to think about what i want to do. I do trust and like my med onc there, and i loved my lymphedema therapist, and when i was hospitalised, they had pretty good food, i must say! but really, for me, answers are the best, and it seems many of the women here do have great patient/doctor relationships, that is all i am asking for. thank you chrissy, for being an inspiration on how to live with grace and humor, and understanding, to me, you are one of bco's, 'stars'.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2014

    Kath as far as I'm concerned you can never ask too many questions and if you have the right doc they will think the same.  I know it's a pain but I would explore the notion of changing centres.......you may find you will be much happier if you do.  Thank you for you kind words.

    Darkest, yes, that is probably why your moms onc is looking at a chemo as they work quickly where as an AI will also work but at a much slower pace.  My aviator is my two cheeky nieces (7 & 4) and myself taken last February when I visited for their dad's birthday.

    Hoping you both are able to get things sorted one way or another.

    Love n hugs.   Chrissy

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2014

    Kath, I agree it's a pain to even think about changing docs, but since you're in LA, I'm going to PM you who I use, absolutely love, and have never had a problem getting any questions answered, no matter how silly or complex.  And I know other women on BCO who use them and feel equally as passionate about them.   Hopefully it's not who you're already using!!! 

    I can't imagine EVER asking too many questions when your health and life are involved.   Not sure who made that comment to you, but if it was a doc, it sounds like they're threatened by your questions, which might be a red flag in terms of their knowledge.    (((Hugs)))  Deanna

  • purple32
    purple32 Member Posts: 1,767
    edited July 2014

    Hi Ladies

    My husband had stage 4 colo-rectal cancer in 2009.  Recovered fully to excellent health and was working 7 days a week.

    Just found out ( Yesterday) after many many mos of hip pain, he has mets....inoperable,

    Anyone here know how to get a fasttrack to SSDI?  compassionate care /??  They are going to give him  a   3 mix cocktail of chemo to try to shrink the tumor to relive some of the pain.

    Without most of his intestines , there is no wy for him to work on such chemo ...or in such pain...or in this state !

    Sorry...just a mess here today.

    Please PM with any answer.  I do not come to this board on order to respect privacy.

    Thanks for any help at all.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited July 2014


    Purple 32 - First of all a warm compassionate hug for you.  So sorry you have reason to bring you here and please feel most welcome.  I have only been dx stage IV as of May 2/14 so I know the overwhelming pain and heartache your having along with your husband.  Do NOT give up,  you or him, there is so much they can try and if he responds well to the treatment he could live years if he gets the mets under control and there is also no reason to be in pain now.  Insist on something for pain.  I too have applied for CPP Disability as I am Canadian.  Get the forms from your nearest gov office and get the paperwork done ASAP and get the doctor to fill his out ASAP and do not wait to file your portion send it off first and doctors can follow. Do not mail but take to the gov office and they should go over it with you rather than taking days in the mail they will fax it in or at least they did for me.  I would say to get it started quickly as your claim will start for back pay as soon as you file.  It is pretty much a given that he will be accepted without too much delay.  Hope you find peace soon as you both start to accept and cope with this dx and then I hope you both don't forget to still enjoy life.  Don't let this terrible disease steal all your good days!  Believe me you will get there, it just takes some time.  I know first hand.

    Cathy

     

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.