IBC support

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shrink
shrink Member Posts: 936
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  • shrink
    shrink Member Posts: 936
    edited March 2008

    For those of you who have not been to ibcsupport.org, I suggest you check out the messages for the last 10 days.  Patti Bradfield requested that all long term survivors let us know how they're doing.  When you're newly diagnosed with IBC and read the stuff on the internet, you panic naturally, because the stats aren't too encourageing.  It turns out that there are many women surviving 5 years or longer and doing well.  It gave me hope anyway. And remember, this is just from women who are aware of this site. There must be many out there thriving long after they thought they would.

  • Squeaker
    Squeaker Member Posts: 87
    edited March 2008

    Shrink - I think we can always use news that is positive. Gold stars for posting this! Laughing It was good to see how it's helped those on that site and maybe it will do the same for the newbies from here that check it out. WE are out there and we're living our lives!!

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    hi all i was diagnosed with ibc last august and what a whirlwind its been. i didnt have a lump i found what found like a slab of butter in my boob, the doc thought it might be an infection but sent me straight up 2 the breast clinic to be checked. I had a mammogram, then a scan, the consulatant and scaner took ages looking at the screen in detail, they then looked at the armpit where they found enlarged lymph nodes, 2 biopsys were then taken, i was told to return the thursday afternoon 4 results(this was tues) was told then that it was cancer in both biopsy and treatment would start straight away, had 6 treatments of fec chemo as the cancer was 8cmx 5cm and was very aggressive,stage 3b had a full body scan but lucky 4 me it had not spread. on jan 2nd 2008 the cancer specialist said the tumour was now small enough to operate , so on feb the 6th i had a masectomy and all lymph nodes removed, the results of the tissue are estrogen positive so i have been started on tamoxifen and will start radiotherapy in april. At the moment i have a seroma which is uncomfortable . the cancer specialist nor surgeaon tell u the full facts of ibc, not in my case anyway ,reconsctruction cannot be done for 2 years, so hopefuuly the cancer might stay away!!

  • shrink
    shrink Member Posts: 936
    edited March 2008

    Let's hope the cancer will stay away and that we can all become long-term survivors.

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    have you finished all of your treatment now ? lets hope the cancer does stay away i dont think i could face anymore of that chemo,

  • shrink
    shrink Member Posts: 936
    edited March 2008

    All of my treatment is done.  I just have to take an AI for the next 5 years or so.

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    hi, i am just waiting to start radiotherapy, but have a seroma so r having to wait untill they stop draining. Did you also have a masectomy?

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    hi, i am just waiting to start radiotherapy, but have a seroma so r having to wait untill they stop draining. Did you also have a masectomy?

  • shrink
    shrink Member Posts: 936
    edited March 2008

    Yes, I had chemo, bi-lat mast and radiation with Xeloda - the works.

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    hi you had the same treatment as me then, i bet your glad that it is all over, you are now on the road  to recovery. did you get pain weeks after your masectomy!! i am quite uncomfortable r you still getting any pain

  • shrink
    shrink Member Posts: 936
    edited March 2008

    My surgery took place on Dec. 3.  The burning sensation and pain lasted for about 3 weeks and started to get better after that.  I didn't have any recon.  Every once in a while I have a swelling sensation in my upper arms but I think it's related to lymph node removal (21).  Hope you're feeling better soon.

  • suzyq18
    suzyq18 Member Posts: 33
    edited March 2008

    hi shrink, went back to hospital yesterday and saw surgeon sent me for blood tests and a chest xray, will see the oncologist next week, thinks it could be the tamoxifen making me so tired, have to wait and see , hope that you are well and your swelling is not lymphodema

  • Heidihi
    Heidihi Member Posts: 4
    edited May 2008

    Hi all, i just need some advice.  I am a breastfeeding mother of two.  And I have had mastitis in the same breast only one side 10 times.  I have been on antibiotics, antifungals, NSAID's etc....  I feel I have an underlying problem and the doctors are finally listening and looking further into my problem.  I get mastitis or the start of it at least 2x's a month. Sometimes it's debilitating other times I catch it and treat it before the fever's set in.   I went to see the doctor last thurs. because I wanted answers.   My milk was cultured and now I am waiting for the results.   The doctor said that the next step if the cultures are neg. would be to see a specialist because she would be worried about IBC. It's rare she said but is something to consider.  The symptoms I get when the mastitis come on are the same as IBC.  I seem to have underlying breast pain all the time, sometimes pain under my arms and down my arm, there are no palpable masses, no rash or reddness (only when the mastitis is present).  There have been times when I am nursing and I notice a small red spot that is very painful (about the size of my pinkie nail) then a few hours later 1/3 of my breast is very hard red, painful.   It usually goes away to return another time.  I really hate meds and have been on so many and i am sick of it to be honest and now just want answers so that I can nurse my baby normally and everyon could be happy.  Do any of you have any thoughts to all of this and what I am going through.  I will let you all know the culture reports when I get them. 

    Thanks Heidihi

  • nugget47
    nugget47 Member Posts: 13
    edited March 2015

    what happened to this site?  no postings since 2008.  did everyone decide to move to a new site?

     

     


     

  • BOOMBER
    BOOMBER Member Posts: 1
    edited April 2015

    Hi I am new to this site, I was diagnosed with IBC in April, 2013. It happened so quickly, aggressive chemotherapy, surgery double masectomy, radiation twice a day for 6 weeks, now I am approaching my last hormone treatment of herception.  I had 17 lymph nodes removed and all tested positive.  The pathology report showed several tiny microscopic tummers after surgery.  But after my radiation I had a PET scan and there is no sign of cancer at this time!  I'm still very scared and have never shared or attended any type of support for my cancer. But I feel it is time IBC is a very scary cancer and I feel blessed at this point. I hope that this will help others have faith.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hello Chaycollins and BOOMBER,

    It would be great to see this thread revived for those of you in need of support for IBC, so do keep posting here!

    There is also an active IBC Support thread. Check it out: IBC Support

    The link below is very helpful for links to information and support for IBC patients. (it's been inactive since 2013 but the header post has lots of helpful and informative links all related to IBC).

    IBC Information and Resources Thread

    Sending our kindest wishes to you both,

    The moderators.

  • nugget47
    nugget47 Member Posts: 13
    edited April 2015

    Recently found out U-M has an IBC Clinic.  I am told they are targeting specific genes causing IBC.  Every IBC pt has a different gene driving their cancer, and there are several of them.  We are checking into this.  Has anyone else heard of this or experienced it?  It sounds so promising. 

  • nugget47
    nugget47 Member Posts: 13
    edited April 2015

    Buy the way, thank you to the moderators for additional info. I do frequent ibcsupport.org also.  Best of luck to you BOOMBER.  My Dashboard says I have no friends.  I have no clue on how to do that and am having a hard time fitting into the chat rooms due to the fact that I have no idea what they are talking about.  But, I thought I could offer what new info I receive if it can help anyone at all. Great day to all.

  • Windermeremom
    Windermeremom Member Posts: 16
    edited April 2015

    chaycollins- Can you please tell me where to find more info on the new clinic at U M ? I was diagnosed with IBC in December and although my mass is shrinking with the chemo, I am trying to decide wether or not to go to a specific IBC clinic for the surgery and radiation.

  • nugget47
    nugget47 Member Posts: 13
    edited May 2015

    Windermeremom:  Sorry, I have not visited for a long time, so was surprised to see your post.  I think the clinic was started in 2007, but I only recently accidentally found it while researching the MD Anderson site, which has a state of the art IBC Clinic and the latest in research.  My daughter, who lives near Hudson, MI is now being treated at U- M.  She was diagnosed with IDC, subtype IBC, TNBC in Aug. of 2013.  The oncology surgeon who is to remove her other breast in June works closely with the IBC Clinic there, which is headed by Dr. Sofia Merajver.  After she heals from this upcoming surgery and reconstruction of both breasts, she will be seen at the IBC clinic for further testing specifically for IBC.  The number we used to obtain info about the IBC clinic is 800-865-1125.  I hope this helps you or maybe you have already found the information you were looking for.  In that case, I really am very sorry I did not check back here sooner.  The best of luck to you.


     

  • nugget47
    nugget47 Member Posts: 13
    edited May 2015

    Just wondering how you are windermeremom.  Where did you decide to receive treatment and how is everything going so far?  I was just thinking about you and hope you are doing well this far.  I love my daughter and feel so much of the pain of what she is going through and I feel I understand a lot of what you are feeling.  My best wishes to you.

  • nugget47
    nugget47 Member Posts: 13
    edited May 2015

    Hi Boomber,

    I am sorry I missed your initial post.  I sometimes get distracted and miss things.  I hope you are doing well after your treatments so far.  It sounds as though you got good news after your PET scan.  It is not unusual to be scared.  My daughter was diagnosed IDC, IBC, TNBC Aug/2013.  She has been through the wringer.  She still gets scared.  She is not out of the woods yet, by any means.  Facing mastectomy on the other breast June 3, then reconstruction of both, then she will be seen at IBC clinic at U-M for further evaluation.  Just hang on and try not to let the fear take over.  I wish you the best.

  • Windermeremom
    Windermeremom Member Posts: 16
    edited May 2015

    Thank you for your kind thoughts chaycollins. I am doing okay, three more chemo treatments to go. I am being treated by Florida Hospital's Cancer Institute. Insurance would not allow me to go out of state so I wasn't able to go to an IBC specialty clinic as I had hoped. I do plan on getting a second opinion before moving on to surgery and rads, probably at Moffitt or Mayo Clinic since they are close to me.

  • elsan
    elsan Member Posts: 1
    edited May 2015

    I'm a 37 year old and am new to this site. I was diagnosed with Stage IIIC IBC in Dec 2014, right before Christmas (I had been misdiagnosed by two different doctors for almost a year, but that's a whole different post). Started chemo immediately (completed 8 rounds A/C+T) and am now preparing for a bilateral mastectomy next week. I also met with a radiation oncologist who said I'd be doing radiation twice daily for 4.5 weeks. BOOMBER, you are the first I've come across who has been through the twice a day radiation. I researched MD Anderson, but would love to hear on how radiation went.... I'm a little worried about the blistering and burning as I know that's the purpose of the aggressive radiation treatment. Was bolus used during your treatment? .... To all those who have posted to this discussion board, thank you for sharing your stories. It has been a whirlwind since being diagnosed. Now that I'm almost a month post-chemo, I'm feeling more like myself and am able to read your stories and research more.

  • Meadow
    Meadow Member Posts: 2,007
    edited May 2015

    Elsan, nice to meet you. I am so sorry you were misdiagnosed. I have read that is unfortunately too common with IBC....Most doctors have never seen it, or will ever see another patient in their practice. I hope you are seeing results from your chemo, and are ready for surgery next week. Will you have support at home for a few days? hugs to you as you prepare for the next phase of your treatment.

  • nugget47
    nugget47 Member Posts: 13
    edited May 2015

      windermeremom, I  am sorry you cannot have access to an IBC Clinic and does not mean you will not receive excellent treatment at another facility.  Mayo clinic is a very respected facility.  And wherever you do go, let them know what your wishes are for treatment. Be strong and best wishes.


     

  • nugget47
    nugget47 Member Posts: 13
    edited May 2015

    Hello elsan, I saw you wrote that you were misdiagnosed for a year.  So many women say that.  I am sorry for that and that doctors are not educated properly about this disease.  I know that is past for you and you cannot go back, but from this day forward you can do everything in your power to change your future outcome.  Please learn all you can about IBC.  My daughter is enrolled in an IBC Clinic at U-M.  There is so much being learned about this cancer and new targeted treatments being used. This is sounding very encouraging. Stay informed, stay positive, and take charge of your future.  Best wishes with your radiation treatments.

  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2015

    Just to let everyone new know that I will be 6 years out from ibc diagnosis with bone mets from 6/09. Did chemo & hormone therapy (Femera and now Aromasin and have done Affinitor) plus Xgeva for the bone mets. No one expected me to last this long with a stage IV diagnosis. I believe survival for ibc has increased since new treatments are coming out. When you see statistics know they are outdated and that many of us are surving this longer than 2years.

    Terri

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2015

    ibcmets - Congratulations! I'm not too far bebind you in hitting 6 yrs from DX - Aug 8. I was IIIc and am still NED. When I hit the 1 yr mark all of my Drs told me that they hadn't expected me to make it a year - but here I am still and living and loving life every day.

    I agree - there have been so many advancements in TX for IBC (even in the years since our DXs). Also almost all the 'research papers' on line are VERY dated and not reflecting today's prognosis.

    Actually - I do not put any 'store' in stats or percentages. 'Stats' are nothing more the average of everyone lumped together, not anyone individually. We are each unique individuals - not the average composite that stats show. Some come to IBC (or any health issue) with no health issues that might compromise our prognosis/outcome of TX. Some come with major health issues that can/do potentially compromise the outcome and/or what TX plans are 'doable'.

    My only issues I brought to my battle with the Monster, were some arthritis in upper back and osteopenia, so no limits to what TX I could do. I also was within normal weight, was very active, never have smoked, never have done drugs, good diet and a positive attitude. Oh yeah, I was 63 when DXd - will be 69 next month and everything still applies to my life. Of course, this does not guarantee what tomorrow holds (nothing does as all sorts of 'things' can happen - I could get bit by a rattlesnake or something else) but as I see it, it's better if the body is not already compromised.

    %/Percentages also do not matter to me. Again - they are the collective average - not individual. As I see it, my personal %/is either 0% or 100%. Either I will be 100% developing 'something' (recurrence/mets/etc.) or 0% and never develop anything more. So, to me/for me it's either 0% or 100% - nothing in between. (I have discussed my thoughts on this with several of my Drs and they agreed with my outlook. Actually - my Chemo Dr said that he had been a bit surprised early on I had not asked for stats or percentages as most do.)

    I know I have a very different outlook than many - that does not mean that I think it's the only way to think/believe/feel for all - it isn't. I only mention to perhaps give a different prospective that may not have been thought about. The best to all - each and every unique individual - it would be a very boring world if we were all the same.


  • Madison4568
    Madison4568 Member Posts: 54
    edited June 2015

    Chaycollins,

    You daughter will love Dr. Merajver! I see her as well for IBC. I was diagnosed October 2014 at age 22. She will do everything in her power to help your daughter. She is so kind and caring! We are lucky to have her in Michigan. I just started a clinical trial for Olaparib for triple negative BRCA1. I am not sure if your daughter qualifies but I would certainly ask about it. Keep us posted and good luck to her.

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