IBC support

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!!

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,

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?

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

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.

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. 

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.

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.

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, 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.

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 - 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.