Topic: I have IBC...do you? Please Read!!!

There are many of us out there who are going through the same scary thing.  Check out ibcsupport.org for lots of info and support.

I have IBC.  It began in Jan. 07 as invasive ductal - a solid tumor.  But a year later it recurred as inflammatory.  My oncologist had never seen invasive recur as IBC in 20 years' of practice.  Great. 

Anyway, I'm in a clinical trial at Duke that includes targeted therapy (Avastin) plus two chemos, Abraxane and Carboplatinum.  It is working; the tumor is visibly shrinking.  There are many treatments for IBC and many women have survived it.  We both need to remain hopeful.  There is reason to.  I also have young children.  They are 7 and 12.  And I am a single mom to boot.  My ex has emotionally checked out.  At least you have a partner to go through this journey with you.

Valgalrunning

hi tamara i also have ibc, diagnosed last august. i have just completed all treatment , and wonder if it will reccur, but for the sake of family and friends  you have to stay positive, you have to count each day as a bonus there are a lot of woman who have survived 20 years and more, all the time there is new treatments for ibc, so stay strong and think positive

Looking at the symptoms of IBC it is very simular to what I have got now. I have an appointment on Monday at hospital and am very worried. Can you tell me what sort of tests they do. I have had a mamogram before as I have had cysts before but they never felt like this and I have never had an inverted nipple or breast redness and its never been swollen before.

Hello all,

I was diagnosed July 2007 and have followed the same path many of you have.  It is so interesting to read the different chemos we were given.  I had TAC.  My onc said it was the most aggressive chemo.  It gives me hope to see the other drug names as should I need it again, I know there are so many other drugs that have worked.

Mrs_X your daughter is so pretty.  I visited your website, great family pictures. 

How are you all liking your short hair?  I am pretty o.k. with it but would like a little more bang!!

 Keep us posted on how you are all doing and God Bless.

Diane 

The word remission was not used at my last appointment, and I did not ask it either.  My labs were great and I feel great.  My onc wants a pet scan yearly and gave me the option of when to have it.  So of course, I picked December.  I know it is a stick your head in the sand thought process to pick December, but last year was really cruddy and for my family, since I feel so good, I want to wait as long as possible for the pet scan.  I work at the Regional Cancer center and see my Onc almost daily, so if anything changes in how I feel, I can always track him down.

 Hope you are all feeling well.

Diane

suzyq18

I went back to work very limited during my radiaition treatments and then back to my normal schedule on April 1.  My last chemo was nov 4, surgery dec 3 and last rad tx on feb 22.  I take tamoxifen and do have fatigue but I find I do really feel good most days.  You mentioned mamos, did you have a mx?

Diane

Sue,

The reconstruction question is a big one.  I purchased a $700 prosthesis only to run into truncal lympedema and the OT wants me to hold off on wearing them right now.  So, I have been going around totally flat for 6 months now.  I did not think it would bother me, but with summer clothing it presents a bit of a challenge.  I am also over sensitive to my port insertion and removal incisions showing so I have put restrictions on what I am comfortable wearing.  So, back to the original recon question.  Yes, I would like to do it but I am not willing to do another year of procedures at this time.  I really do not want to be touched.  And, as you know, the fear of the cancer returning is so great, I do not want to "waste" anytime away from my family.  It is a really personal choice.  I do have a few side effects from the tamoxifen.  Insomnia is a big one but that might be more from the menopause club that I joined instead of the tamoxifen.

Hope you are doing well.

Diane

Sue,

I had 18 weeks of chemo as well.  6 treatments total, 3 weeks apart.  I did not start the tamoxifen until April, about 6 weeks after radiation ended.  My onc said this was controversial.  We have some oncs in our clinic that start it during radiation and some that feel skin needs to be healed to start tamoxifen, my onc being of the latter opinion.  My insurance covers about $300 of the prosthesis, but I made the mistake of going somewhere outside of  plan so had to pay a much higher deductible.   Oh well, its only money!!  I have not seen a plastic surgeon, and I think I will also hold.  The breast surgeon said she took as much skin as possible so I think I might not be a candidate for recon anyway.  It is nice to connect with other people with the same dx. 

Diane

There are many things about this particular form that people just don't get. There is breast cancer then there is inflammatory. I started my journey almost 3 years ago but just finished treatment in nov 07. It was a long hard road but I am sure glad to be done with it. When I got diagnosed I had a 12 and 14 year olds. My youngest was with me so she saw and felt it all. While my oldest just came home for the last 10 months (and has since went back home to Oregon).

I am still on Tamoxifen and I have gained weight and its bothering me a great deal. I opted for a double mastectomy because in my research it made sense to me. As to the person with trunkal edema... they told me to actually wear my prostetic and in fact I just got a bellisse bra which is for trunkal edema. Have you seen a Lymphedema specialist? Mine is great and this is the second one. I have had trunkal edema that has never really went away since my mastectomy 2.5 years ago.

As for reconstruction, I have also researched that and many doctors do not recommend it for 5 years due to the fact inflammatory is in the skin and can come back under the reconstruction and be out of hand before it is found.

 Just my two cents since I woke up WAY to early!

tina

Check out www.ibcresearch.org  .... I use their listserve and get all kinds of wonderful support from "yet to be met" friends who are IBC survivors.

I take Effexor 75mg for hot flash control ... and am on Femara (letrozole) with associated weight gain & aches.  Fish Oil supplements (recommended by GP) are helping with the latter.

 Karen

dx 12/07, IBC Stage IIIB, 4/11nodes, ER+/PR+, HER2-

hi diane, just thought id drop a line ,how r you doing, im feeling tired at the moment, i guess its due to all the treatment that i have had, not back to oncology untill sept,take care sue

Hi Everyone,

 I found out that i had ibc 3/01/08.i have now finished chemo and had a bi lateral masectomy. i am 5 days out of hosp had lymp glands on right side removed none on left side.Now i can only pray and live my life to the fulless.                        

                                                                good luck.

                                                                         Dorothy

hi diane, glad that you are  doing well, when i get a\headache or backache i also worry,im going back 2 work in the next couple of weeks so i am also trying to get my house tidy!! it will also b 12 months on the\20th august snce i was diagnosed, its been a long hard struggle but we have both done it and must now look ahead,hopefully things will get better for all of us. i live in coventry in the uk not far\from stratford upon avon.take care sue

hi bliss and dorothy this site will certainly give you strength and hope,i also have come through my first 12 months. you both have lots of treatment ahead,but you will come through it,take everyday as it comes,  you must rest after treatments, my family have been brill throughout the treatment days, take care both let us know how you are doing sue 

Hi Tamara - my best friend Eileen has been battling IBC for the past 7 years.....shes doing fine.....as a matter of fact, we're going on a cruise with our husbands in May!!!!  Yes its been difficult for her, but shes got a great onco...she looks great and feels great.  Dont let this diagnosis scare you - all cancer is scary.  A little advice......eat alot of raw veggies and fruits, cut back on red meat and dairy items and avoid sugar - cancer feeds on sugar......eliminating these will help your body fight this .  God bless you!!!!