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

TamaraT70

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

TamaraT70

I was diagnosed with stage IIIB Inflammatory Breast Cancer in July 07.  I am really feeling the need to speak to someone else going thru my battle as well.  Just need to feel like someone out there understands what I'm going thru as it's such a unique and aggressive / scarry type of cancer.  (I know, what cancer isn't scarry!!)  I am a Mom to 3 beautiful children all under 14, and am married to the most wonderful man - thier Dad.    Everything to live for, to be happy about... I love my life.  But I have a fear that no one else seems to truly understand.  Please, if you know someone or ARE someone who is also battling IBC and would just like to touch base with somebody else who understands what you are going thru, please feel free to email me.  Thank you,

Tamarat70@aol.com

nixieschaos

Hey Tamara,

I just sent you an email...I am right there with you!

shrink

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.

mrs_X_Sunneedazee

Tamara,

I am a young mom of 29 with 5, yes, FIVE kids. I was diagnosed stage 4 IBC May 2007. I have made it a year, and I hope that I will have many more years to come. My husband and I celebrated our 11th anniversary today. I just live for these small milestones, and enjoy each day. There are some days that the fear almost overcomes me, and I get sad about what I might miss out on if I die too early from this disease. I just have to force myself to remember that every day is a gift, and no one knows when it will be their time to go.



Cancer treatments are hard, and scary, and the tests, and doctors appointments changes our lives, and we can never go back to how things used to be no matter how much we wish for this to be so.....



Welcome to our group!!!! We're sorry for the reason, but we look forward to getting to know you!!!

Hugs,

Amber

valgalrunning

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

nixieschaos

Valgal,

There is EVERY reason to be hopeful.

I am stage IV. My girls are 8 & 13. How are yours handling this?

suzyq18

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

suzyq18

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

doz

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.

suzyq18

hi doz the symptoms i had were a very itchy breast that was red and warm to touch, it was also a lot larger than my other breast. they did 2 core biopsys that were back in 2 days which confirmed that i had the dreaded ibc mine had also gone into my lymph nodes, this all happened within a very short time,treatment of fec chemo was started straight away. my tumour was 8cmx5cm i am now cancer free, and pray that it will nor reccur the consultant has said i have a high chance of it coming back but i will stay positive, you must do the same to fight it let us know how you get on

DianeE

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 

suzyq18

hi all wondering how doz got on hope it all went well.

you asked the question on hair!!! glad i have some now but would prefer it to be longer,as i am sure all of us would, loosing my hair was 1 of the worst things for me.hi diane have you been told that your cancer is in remission now,you were diagnosed just before me.

DianeE

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

hi diane, glad that you r doing well do you still get tired after all the treatment, im not back at work yet but hope to  return  in the next few weeks, my breast nurse said it will take at least another 6 months before my energy level return, due  to the harsh treatment. we are not given yearly scans in the uk just mamograms every 18 months and blood tests we see oncology every 3 months.have they told you if you have a high chance of the cancer returning, i cant have reconstruction for 2 years just in case it comes back dont want it anyway,so that doesnt bother me take care

DianeE

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

suzyq18

hi diane, glad to hear that you are feeling well i didnt finish treatment untill 9th may, but still get tired. i had a masectomy and lymph nodes removed, think this is the norm for ibc, do you have any side affects from the tamoxifen, i have put on a little weight, but no other side affects. my oncologist says there are no side affects but i read a lot of woman on here get pains in their bones etc. are you having reconstruction take care sue 

DianeE

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

suzyq18

hi diane reconstruction is a big one, but the thought of 5 hours of more surgery really puts me off, my surgeon will not do it for 2 years in case the cancer decides to come back, i dont know if they do it straight  away where you are  i think its because of  the type breast cancer that we have. i am going for my fitting for my prosthesis on july 10th ours are provided by the hospital, we can have a new one every 3 years, unless they are faulty then you can have a new 1!! i think you can buy them here for about 100 pounds, do your insurance not cover you for them. i also dont sleep very well at night due to the hot sweats ,so you get up in the morning feeling tired which does not help., did yours start when you had the chemo. how long have you been on the tamoxifen i started in feb, straight after surgery . did you have 18 weeks of chemo or was yours for longer, its really nice speaking to someone who has been through the same thing take care sue

DianeE

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

suzyq18

hi diane  you had the same treatment as me then, i think the treatment is the same worldwide for  ibc chemo surgery,rads tamoxifen. i read that you have young children this is more challenging as you have to stay focused . i am 45 but my kids are 26 and 23 i think the worry for them has been awfull my daughter came to all my chemos so she knows how awfull the treatment is. my veins have never returned to normal yet, if the cancer came back i dont think they would tolerate any more chemo and i would have to have a central line put in,hopefully this never happens. which part of america do you live in, iv only visited florida.my oncologist started me on  tamoxifen a week after my masectomy i was not not told about it affecting the skin, they are all different!!! How long will you be on it for , im on it for 3 years then are going on arimidex. take care sue

txred9876

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

suzyq18

hi tina, are you having hot flushes so cant sleep very well. there seems to be quite  lot of us with ibc, although saying that during my treatment i have not found anybody else with it.the docs are very reluctant to tell me the true facts about ibc, probly dont want to scare me, you had a lot of treatment is your cancer finally in re mission now, i wonder every day wether mine will come back. are you going to have reconstruction, i have opted not to have it i think my body has been through enough. sue

germangal

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-

suzyq18

hi karen i am on tamoxifen, and have gained quite a lot in weight. will try and see what the doc can give me for the hot flushes as they do get me down, especially when you are trying to sleep will also have a look at the other site, it sure is good to know that people are surviving ibc, and the treatment is working, and giving better outcomes. sue

suzyq18

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

Bliss

I was diagnosed last month with invasive ductal carcinoma and inflammatory breast cancer.  I had my first round of chemo last Thursday.  Adriamycin and Cytoxan.  I was happy to hear they found no mets on my pre-tests.  I also have Secondary Progressive Multiple Sclerosis, and am wheelchair bound.

I know I have a long road ahead of me, but it is heartening to see so many of you making it through.  Reading about IBC can scare the bejebers out of you.  They also suspect I have probable uterine cancer (am I an overachiever or what?)  My oncologist had me through pre-tests and on to my first round of chemo less than a week after I first saw her.  She says the IBC takes precedence over everything else and there was no time to wait

One thing that has raised the curiosity of both my oncologist and surgeon is that my IBC seems to be a slower growing kind than usually seen.  I hope that is a good thing.  

I'm not looking forward to losing my waist-length hair - but it's just hair after all.  It will grow back eventually.  I wish the same could be said of the breast I will lose, because there are no good options to make me match.  Implants nor prosthesis come big enough.  I'm more interested in being here for my family - my husband, and especially our youngest still at home - a 15 year old daughter.

I'm glad to have found you.

~Bliss

dorothy1918

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

DianeE

Hi Sue,

I   am doing ok too.  I am also noticing fatigue but I have been busy with family things and trying to clean out all the stuff in the house that has accumulated over the last year.  It really makes me nervous though when I have a back ache or headache. 

Glad you are doing well.  Where do you live?  Sorry if you posted this previously, memory not so hot anymore either.  I live in Green Bay, Wisconsin. 

To Dorothy and Bliss and any other newcomer, welcome.  Sorry you had to join but this site will help you through your journey.  I am just past the 1 year mark and can not believe it has been a year. 

Take care,

Diane

suzyq18

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 

suzyq18

hi bliss, did the docs\say they can do reconstruction at time of masectomy? over in the uk you have 2 be at least 2 years free from ibc before they will consider reconstruction. it would be good if they did it like that here, let us know sue