Need some support and positivety

Hi i am 34 and got diagonsed with breast cancer, three weeks ago. I went into hospital today for a mastectomy, was put to sleep, but when the surgeon went to operate he had found that the tumour had grown a lot in two weeks and my breast was incredibly red and sore, they didnt do the mastectomy but told me that i had inflammatory breast cancer. I will now start chemo on thursday whilst they try and shrink it.

I am just so worried now as i have read that this type of cancer is very rare and very agressive and also that it is hard to treat and the success rates are much lower. I have three very young boys 1,5 &7 and so deaperately want to see them grow up.

Is there anybody out there who can show me some hope for the future.

Hi wallace80

I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes Sam, BCC Facilitator

Hi Wallace80

Sorry to find you here, it’s a dreadful shock when you are diagnosed. I was diagnosed with BC on 6th October, still waiting for chemo to start.

I am surprised your consultant didn’t know what type of cancer you had before suggesting mastectomy, and what about the tests? didn’t they show up the size?

I have a large invasive ductal carcinoma that has to be shrunk first before mastectomy, I should start my chemo next week or the week after - have 8 sessions in total (once every 3 weeks). I think they prefer to shrink it first to make it easier to operate on. Also have to have radiation after mastectomy.

I think it’s a terrible way for you to find out what you diagnosis is - you must be feeling shell-shocked.

The ladies on here give fantastic support and many have been through all kinds of different treatment, successfully, not always an easy ride, but the main thing is that it is very treatable.

Best wishes

Daysie

Hi there
It sounds like you are in a very difficult place right now, and with 3 yound children things must be tough :frowning:
There are a few IBC posters on here and hopefully someone will be along soon to support you. Whilst IBC can be very aggressive, so can the other more common types of BC; and seemingly aggressive cancers can respond really well to treatment, so please stay hopeful. It is very early days and Im sure your team have put together an effective treatment plan for you. What chemo regime are you starting on thursday? Do you know anything more about your diagnosis (eg. is the cancer hormone receptive/ her2 positive or triple negative, are nodes involved etc?)? The good thing with having chemo first is that you will be able to see and feel the chemo working, which should reassure you hopefully.
I hope you have lots of support around you? I am another youngie (was 32 at diagnosis, just turned 34 last week) with a young child who was only 7months when this all started. Chemo wasn’t too bad but I couldnt have coped with the baby on some days so make sure you accept offers of help so you can rest when you need to.
Keep using the forum for support and advice. Best of luck to you. You CAN do this!!
Tina xx

Hi Wallace80

I was recently diagnosed with IBC on 11th October and was warned not to read what was on the internet as a lot of it is very old and out of date. I had my first session of Chemo last Friday. There are a few of us out there that have IBC because it’s rare, I’m sure the others will be along soon. Try not to worry too much, though that’s easier said than done. I’m 44 and have a 19 year old son but lost my husband in 2010 to cancer. I’m fairly confident in getting over this cancer and the odds are much better than they used to be, though I’ve not asked what mine are. I will be having mx and rads after that so it sounds like the same treatment plan. It must be tough with 3 young children so take it easy when you can and take any help offered.

Weme

Hi Wallace 80,
Im 41 with a daughter of 20.
I was diag with triple neg IBC in September last year after being mis-diagnosed for 6 months. At that stage, my breast was the size of a large melon, and as I found out later, multiple lymph nodes affected, but hadnt spread anywhere else. I started chemo straightaway, had 4 sessions of FEC, and 2 of TAX. During this time, there were no signs of tumour shrinking, and during the TAX chemo it was getting bigger, which made me think it hadnt worked. The amazing thing is that after my mx and full node clearance in January, the results showed all nodes were clear and I had a small clear margin around the tumour, so obviously the chemo had done its job. The tumour they removed was 12cm x 12cm (yes, cm!) and weighed half a stone! So, my message to you is you can stay positive, even if you think its not going well. I went on to have 25 radiotherapy and 4 more TAX chemo, (both at same time which is not common) to attack it with everything they could, in case there were any tiny particles that had escaped! The journey is not an easy one, but you can get through it and reading other posts on here, and comparing notes definetly helped me. I am sending you a massive hug and lots of love, and your boys will get you through this. Please feel free to pm me if you would like to know anything at all, theres too much to put on here! Hope everything goes ok thurday. Kerry xx

Hi Wallace80,

One of the old timers here. I don’t visit the site very often now so I’ve just seen your post. I was diagnosed with IBC in March 09. Like Kerry, I also had a 12cm tumour. After chemo it had shrunk to 1.5cm and results after surgery showed lymph nodes free of cancer. I had radiotherapy and herceptin after surgery and treatment finished in Dec 2010. It took me a while to recover my strength after all that but I got there. I’ve been back at work since April 2010.

The stuff you read on IBC really is mostly out of date. Advances in treatment in the last 5 or so years have made a huge difference. Cancer in general is a very unpredictable disease but IBC survival rates are much improved. It is still rare so there aren’t as many of us as there are with other types but there are a few of us who have been cancer free for quite some time. Others have been living with secondaries for a long time. I’m hoping the fact that many of them haven’t posted for a while means they’re all doing well. We tend to pop up if something is worrying us (like a check up looming)

Good luck with your treatment. I hope it goes smoothly. You’ll get lots of support here. You will nearly always find someone who’s had similar experiences and can answer any questions you have.

Jan xx

Hi Wallace 80, you have come to the best place for support, all the ladies on here are great, mainly we know just how you are feeling as we have been there too. I was Dx with IBC in March this year and like you feared the worst, but the way IBC is treated is always chemo/Mx/rads.
I have had Tax chemo which was hard going, but it worked fantastically well for me , I have had radical Mx and node clearance (because some of my nodes were affected)and currently having Radiotherapy.All in all my treatment has so far been as successful as my other ‘friends’ on here and they have normal BC. I am also having Herceptin and Letrozole for the next few years to keep everything stable,IBC is rare that’s true but it is no harder to treat than normal BC just harder to diagnose,
We are a small but friendly bunch so don’t worry about asking for help there’s usually someone here to answer your questions.
Here’s a big HUG you will probably need one.
Jean

Hio Wallace 80

Sorry not to have seen your post earlier.

I was Dx with IBC in august 08. Like the others I had my chemo first followed by a bitaleral MX, rads and then a year of Herceptin. Now I am halfway through 5 years of Hormone treatment.

I can’t say it has been easy but the situation with IBC is much more positive now than it was a few years back. My life it as near normal now as it ever was. BC rocks your world but more and more of us are coming out the other end.

I am happy to answer any questions you may have either on here or via pm. There are no silly question, believe me I have asked some strange things in the past, but there is always someone to help

Good luck

Andie

Hi Wallace 80

I agree with all that the others have said. You will get there. I was diagnosed with ibc March 09. I’ve stayed on herceptin as suspected spot on liver when diagnosed. had chemo, mx,2 nodes affected so node clearance, rads. I’ve been very well since and have had ld recon (last bit of lipo coming up) and uplift/reduction on the other side. Unfortunately my last ct scan showed a slightly bulky head on my pancreas and after a EUS/biopsy bc cells were found (very rare apparently). However I’m not having any treatment as yet, I’m staying on herceptin and having another scan in a couple of weeks to see if it’s shrunk/ stable. My consultant is’nt to concerned and as I feel so well nor am I!! I actually feel fitter now than before diagnosis and intend to be around for a very very long time. I do think they will in years to come use herceptin for other conditions as it’s boosted my immune system and I’m always full of energy. I’m 53 so older than yourself but as Andie T says we are quite small group and don’t post that often, However as you can see we all check the forums regularly and respond if needed.

I wish you all the best for your treatment and go with Andie T that if you have any questions please feel free to PM us. And don’t Google!!! xxxxx

Hi to any other ibc ladies out there xxxxx

Hello Wallace 80

I was dx with IBC in June 08 - I had 6 rounds of taxotere and started Herceptin with chemo once the results of my biopsy were HER 2 positive.

In the beginning my tumour was more than 8 cm and after the 6 rounds of chemo had reduced to 2.5 cm.

I then had a mx and node clearance followed by 5 weeks of radiotherapy and continued with Herceptin for a year.

Three years down the line I have had DIEP reconstruction and am about to have further surgery in December to tidy it all up.

I feel well, but can remember the shock of my dx like it was yesterday, but hope to reassure you that there is a life after IBC and treatments these days are much better.

Good luck

Hi Peacock,

We haven’t seen you here for a while. Good to hear you’re doing so well. I hope the surgery goes well.

Jan xx

Hi Jan

We are 2 of the old-timers aren’t we and like you say I rarely check up on this thread, but to anyone who needs an answer, I am always available by PM and hope to ease people’s worries.

To all newbies, I hope our words gave you all some hope that you can look forward to the future without treatment and if so desired, even reconstruction.

Good luck to older’s and newer’s LOL

May I just ask, a couple of you mentioned that first nodes were involved at diagnosis but then after surgery the nodes were declared free of cancer? How’s that? My node involvment was confirmed by core biopsie when they did the breast biopsie in the beginning (just last month). Had a CT scan 2.5 weeks after 1st FEC and it showed no enlarged lymph nodes in my axilla? I find this a bit confusing. My tuomour is also 5x7.5 cm.

Thanks and love xx

hi wallace80,
i had ibc diagnosed 2010 sept, i had 4 months of chemo the mx i was on herceptin plus i had 15 rads, its a tough journey but its doable, i am now cancer free, hope this helps good luck with your treatment and a happy new year x x

Hi Wallace,

I was diagnosed with IBC in May last year and I was 35yrs old. I have had 6 cycles of chemo FEC-T (3 FEC and 3 Taxotare), mastectomy and now am having radiotherapy. I am 36 now and have 3 rads left to go. My IBC spread to my lymph nodes in armpit so full node clearance. My IBC is oestrogen positive too.
The FEC chemo was hard, taxotare was better. I got blood clots from the FEC so had hickman line put in. My advice is to always think positive, I know it sounds like a cliche but it has helped me no end. I will be happy to help in anyway I can, it is tough, but you can get through it. Add me as a contact for private messages if you want to chat.
Keep strong, ask for help when you need it and KEEP POSITIVE, you can beat this…
Love Babs
xxx