INFLAMMATORY BREAST CANCER

Hiya,

I am 35 and have just been diagnosed with Inflammatory breast cancer on 2nd June. I am not sure about anything else yet as I have another appointment on Monday to see the chemo dr and then a CT scan on Thursday.

All this happened within a six week period of me having symptoms for 3 weeks, thinking it was hormonal changes, then going to the GP and him prescribing antibiotics and also referring me to the breast cancer clinic. Needless to say the antibiotic didn’t work and both GP and breast cancer Dr said it was mastitis. I had an ultra sound with one dr and then a needle aspiration as the lymph nodes under my arm were inflamed. I didn’t have a biopsy on the lump under my nipple as he said it was just inflamed. Went back after two weeks and had another ultrasound then had biospy. Had the results,
Now I am here…

I am ok with it, I can’t change it, but the worst part is not knowing about what will happen.

Hope to hear from others who can offer advice and support. I have posted on the younger womens forum also…

Many thanks

Babs

xxxxx

Hi Babs,

So sorry to hear of your diagnosis.

It is a story that echoes mine. I am 33, my breast swelled up at Easter, I had various scans and appointments with different consultants and was reassured time and time again that it was just an infection and put on 2 different antibiotics. I then asked if I could have a biopsy just to put my mind at ease as I was just so scared. And sure enough, it came back positive. I couldn’t believe it as had started to believe the consultants and as they hadn’t put me forward for a biopsy, I convinced myself that I was OK. This was 2 weeks ago. Then followed 10 days of constant tests, scans, poking and prodding. I was then meant to start chemo on Friday, but had a funny reaction to the general anaesthetic for my op to insert the portacath so it has been delayed to Tuesday.

I’m just gunning to get started and start zapping these cells now. Initially the toughest bit is the waiting game - just constant tests and waiting for results and then dealing with the outcomes and then the next stage etc. Once the treatment planned is laid out for you you feel as though you’ve regained some control again.

Stay strong. Keep in touch. I’ll add you as a contact!

x

Hi Sandytoes,

Yes you are right, the waiting game and unknown is the scariest. I am overwhelmed by the support on this forum already and I have only just joined. I am so glad I did.

I hope your chemo goes well and I will let you know when and what my regime is. It all sounds scary about the portacath, but I know I will be fine…

I am just trying to be as normal as possible until my treatment starts.

Hope to hear from you soon.

Babs
xx

Hi Babs, your story is so familiar to mine re initial treatment with anti biotics etc… but unfortunatly it turned out to be IBC,I am currently having chemo Tax, just had 4 out of 6, I will have MX and node clearance afterwards as this is how IBC is treated by my onc, you are young so I would think they will give you the best treatment which is aggressive but worthwhile.Please keep in touch there are n’t many with IBC on here but we are a helpful bunch.
Once your treatment plan is sorted it does get easier,
Jean xx

No, no - the portocath was fine! I just reacted a bit weirdly to the general anaesthetic, that’s all. I was meant to go straight from having the op to the chemo ward…but all day long I just felt really, really drunk. I had a short term memory of about 5 minutes, I kept collapsing into hysterical giggles, followed by uncontrollable sobbing and had a spinning head. I was like a drunk 16-year old! It was very funny looking back on it now! I just spent the day in hospital reading cheesy mags and watching crap TV - so not the end of the world!!

So, I’ve had a nice relaxing couple of days this weekend instead of being in a chemo fog! One of my friends came to stay with me for the weekend, armed with DVDs and lots of food.

Just gearing up for chemo starting on Tuesday now.

I presume you’ll be having chemo first, like me. Let me know the plan, once you know. In the meantime, stay strong (you sound like you’re neing VERY brave), don’t let your imagination run away from you and try to have some nice moments (a drink with friends/a walk etc).

xx

Hi Babs and Sandytoes

I am in the same position, although am 46 with two girls aged 9 and 11. It is three weeks today since my breast suddenly got red and swollen with a huge lump. Like both of you I have spent the last few weeks getting tests and feeling v. frustrated waiting for results. I still don’t know if it has spread ousted my armpit, but final results tomorrow, pre-chemo tests on Tuesday and finally start chemo Fri 10th.

I agree the hardest bit is waiting and I get so scared each day the cancer cells wil have spread somewhere else. However the onc keeps telling me the 8 doses, one every three weeks, will treat the body systemically and it will be ok, regardless of any spread. Although she did agree thx breast lump has probably doubled in doze in a week!

Babs, once you see the oncologist, you will probably feel more confident about treatment, as they seem more confident in treating IBC. I know I did and she answered all my questions very candidly. As Sandytoes said, once the treatment plan is in place, you can focus on that and getting better.

I hope your chemo goes ok this week Sandytoes, I will be thinking about you. Let us know. What drugs will you have, do you know yet?

Babs, I found the more info I got on ibc, the more informed and relaxed I became and the better my questions were. so without googling too much, this site plus the MacMillan and Breast Cancer Research were very helpful.

Good luck to you both, stay strong this week.

My oldest daughter has just presented me with a pair of false eyelashes and a brown eye pencil to draw my eyebrows back in… awh, sweetheart x

Sue

hi, everybody
im 64 and just been diagnosed with ibc. my breast started hurted after a very painful mammogram in nov.didnt go to the doctors til april as i thought i just had some breast tissue damage-no lumps. the doctor asked if i wanted a referal to the breast clinic but i said i would wait. why? i dont know. then in may red cysts appeared,the nipple inverted and it was more painful.had immediate biopsy,tomorrow bone scan,thurs ct scan. chemo next week.then mastectomy after a few months.dont know yet if it has spread but am so frightened
angelina

Hi everyone,

I don’t come on to the site very often now and I’m very sad to see so many newbies here. I was diagnosed in March 09 and just want to tell you that you that there is light at the end of your tunnel. The early days are hard and IBC is definitely a bit scarey but treatment now is really very effective. Yes it’s aggressive and tough but I’m a living example that you can beat it. I had 3xFEC, 3xTax, mastectomy and node removal, rads then 18 doses of Herceptin. It took nearly 2 years of my life but I finally feel as fit as I did before the disease. I had my last herceptin treatment in December and it was April time before I felt physically strong again although I’ve been back at work since March 2010.

Best advice I can give is concentrate on the now and try not to look too far ahead. Take each step at a time and try to make sure you have treats to look forward to in your good weeks. I arranged sort weekend breaks between some of my treatments. It gave me something positive to aim for and good memories to look back on. Makes me feel even now that it wasn’t a total waste of 2 years. It doesn’t have to be weekends away but whatever makes you smile.

Now I’m in training for a fundraising trek through South Africa with Breast Cancer Care in November and the exercise has really helped in my recovery. I suffered from very bad pain and stiffness in my joints all the way through my treatment and they’ve finally gone now that all the drugs have left my system. All that’s left now are menopause symptoms but that would have come eventually anyway (I’m 50 now). Good luck to you all. I hope your treatment is kind to you.

Jan xx

Thanks Jan its always good to hear good stories from people who have IBC like you say its a scary place to be at the beginning, the treatments available now are so much better now,many oncs take the aggressive treatment route now as it has shown to be the best option.Good luck in your recovery.
Jean

I am glad that you girls all found each other on here, and from now you will find that you can support each other, learn together, moan together and laugh together.

I was diagnosed in December and have almost finished my chemo (last one on 17th) then rads and continue with herceptin for a year. But it has gone so fast, and I know how it feels when you first get the news… but believe me, it won’t be long before you are like me.

My side effects will be just about over by July, the rads will be a walk in the park, and the herceptin shouldn’t make much difference, just an inconvenience more than anything.

So good luck to you all… and stay positive.

xx

Had my first chemo this morning and I feel…just fine!! I am rattling with pills as I took everything they were willing to send in my direction! I am trying the cold cap so was in for an additional 3 hours after my treatment finished. And on the way back from the hospital we went to the supermarket and then when we went back we walked our puppy. We had a spag bol for dinner and I am now watching a film…

Obviously I am touching wood as I am writing this as I guess I could feel pretty rotten shortly/tomorrow!!

I know everyone reacts differently, but I just wanted to let you know as I was seriously cr*pping myself having watched my mother and my sister have chemo (years ago - and got very, very ill) and all the awful scenes in films (my sister’s keeper…!).

I am having 4 x AC (fortnightly) and then 4 x Paclitaxol (also fortnightly).

Do you know when you’re starting, Babs? And what treatment you’re having?

Good luck with your treatments Sue and Angelina.

x

Hi Guys,

Well I had my CT scan last Thursday and I get the results tomorrow when I have my prechemo chat and then see the chemo dr. I believe that I will have FEC T chemo dependant on the scan results.

I had my very long hair cut into a bob, so when I lose my hair, its not too traumatic. I have even bought a couple of scarfs, all ready for the hair loss. I don’t know if I will do the cold cap, I think I might just let nature take its course.

I start my chemo on Tuesday at 1000hrs and I am abit scared about it, but also glad that I will start to fight this cancer. I am scarrd as I don’t know what to expect and I hate that feeling.

Well, I will let you know how I get on.

Keep in touch,

Babs
xxx

Hi Babs,

I found the fear of the unknown really difficult and kept pestering my BCN with hundreds of questions!! I was a right pain!

My chemo reality so far is 100 x better than my fears!! The worst I’ve had to deal with is tiredness and a general “flat” feeling - but I can do that!! I think it is meant to get slightly worse each time (joy!) but before we know it we’ll be a quarter of the way through/halfway through etc…

Keep strong.

x

I was in mid-FEC/Tax chemo 2 years ago and the best advice I can offer is that awful as it may get (but remember also that everyone reacts differently…) focus on the fact that IT DOES COME TO AN END!Plan an End Of Chemo Party!!!

Hi all,

Had my first zapping of FEC-T yesterday and it was fine. After I finished my friend and I went shopping for abit. Came home and then chilled. I was exhausted so went to bed early.

I am not doing the cold cap as i don’t like my head being restricted.

Today I feel abit flat like sandytoes and lethargic. I have managed to eat a bit too.

We shall see what the rest of the cycles bring hey!!

Keep in touch

Babs
x

helo im becky mum 2 4 kids was diag with ibc in april very shocked was breastfeedin got told it was masstitis +sent home 2 onths laterknew t wernt right had just moved home so see a new doc sent 2 hosp 4 tests and omg shock!!! and doc said only a few survive huh so i swore at him and said well i will . done alot of cryin but now on 3 chemo nxt week lost all my hair +put on weight lol noooo but i believe in me, and will beat it redness+lump gng down as it was the size of a orange ,xx

Hi Albie, sorry to hear of your DX, for the doc to say that to you is awful, my onc told me that IBC is not more difficult to treat than ‘normal’ BC just harder to diagnose. I have had 4 tax chemo s and my breast has shown definate improvement ,I was told many ladies live for years, and I have secondaries in my lungs ! so don’t despair .
Good luck with your further treatments, pm me if I can help in any way.
Jean

thanx jean i believe tht it can b treated+will b there r alot of strong women out there,i go to a place called cherry lodge in barnet wat gives alot of support, i wish u all the best u will beat it, and keep positive. i sometimes think im mad as i talk to my lump everyday and tell it 2go away!!! it has spread 2my l.nodes ,im atually lookin 4ward 2 surgery get it out. lopsided lil at mo, went on other sites noooo 2 them was so negative, but glad found ths site. lots of lov +big ((((hug))) becky xx

Albie, what chemo are you having ? Is your BC hormone positive and Herceptin positive ? I am having Herceptin for life and also Letrozole after chemo. I am having a full Mx and full node clearance, but that maybe because I have mets in my lungs. I assume you had CT and bone scans and they came back clear, thats good news and a positive to hold onto for you.
Sending you a big but gentle HUG xx
Jean.

Hi

Just posting to support those of you newly DX with IBC. I was DX in August 2008 with IBC,Had 8 chemo 4 xAC and 4 Tax. Bilateral MX(my choice to have both done due to family history) node clearance, rads and a year of Herceptin. Now I am on letrozole for 5 years.

Yes it was hard, but it had to be done and I am still here nearly 3 years later. Initially I thought my life was over and I wouldn’t see another Christmas. Life will never be the same but I have found a new ‘normal’ and try to make the most of every day. I do have ups and downs but the ups are good and the downs are few and far between.

If I can be of any help let me know I will try and answer as honestly as I can.

Be kind to yourselves and accept any help you are offered whilst you are under treatment

Andie