found the ibc section..:)

hi all, im jo and was just diagnosed with ibc on tuesday, i posted on the site but i think i was at a different part, i found the forum really comforting after everything i went through and will continue to check back on here to chat with others in a similar situation…im a bit calmer today as i’ve told friends etc…who’ve been fantastic and can see after a doing a bit of research that it is not a death sentence and the Treatments have really come along,…even though i suspect its gone to my Lymphs, im not sure if i have been actually diagnosed quickly, i know my Lymphs are swollen and i know there’s no point in me trying to guess how long it takes before it possibly reaches other areas…am guessing it could take a month or so?, anyone got any light to shed? and is there anyone there who is being treated for Lymphs aswell…? at the moment i am trying to get as much info together as possible for my meeting with the Treatment Team this Tuesday, i noticed on another post that someone wrote that information is key, otherwise your imagination runs wild and knows no boundaries and i am sure that that type of worry really does not help with the overall condition, im 38 fit a non smoker and moderate drinker with no history, but i know that i’ve lived a really stressful life for the last 15 years and not been settled ( im a musician )i finally settled in Scotland with my partner and bang!..on it came out the blue,…i remember noticing 2 lines under my Armpit about 2 months ago which i now know was related, …does anyone else think its funny that there are so many women getting Breast Cancer? i mean Kylie, Cheryl Crow, Melissa Etheridge…all young Women,…all pulled though i wander if its the Chemicals we put in to our Bodies and are exposed to that cause Hormone Imbalances?..sorry to write such a big post but it came to mind yesterday that the word ‘Cancer’ invokes such a stir…i think our mind and upbringing ( presuming most of us here are over 30) harks back to memories in the late 70’s and early 80’s of awful terminal diagnosis and terrible Chemo effects,…maybe we should change the word and take the power out it?..apologies for the ramble…sending positive vibes to all, jo xxx

hi, sorry you are going through such a bad time waiting for results.You have found the right thread now and will get lots of support from people with your sort of cancer.

But everybody with any sort of cancer goes through the same rollercoaster of emotions and questions. One question that always comes up is–why me, what did I do? But even though the scientists have statistics at some factors that might contribute to cancer, the vast majority of women who,drink, are overweight, stressed etc erc, do not get cancer. It seems the only sue fire way of getting breast cancer is to have breasts.

Yes you are right to get as much information as you can, but it is not a good idea to google, best to get it from sites like this that are up to date and full of people being treated in the UK.

good point about changing the word, especially now there are so many different types and so many different treatments.

Hi there

I haven’t posted too much on this thread for some time but, 3 years ago I was in your shoes and didn’t know which way to go it is all so confusing.

My chemo started a week after diagnosis, followed by a mastectomy and then radiotherapy. I also had Herceptin for a year during and after chemo.

It is a scary place to be in but once your treatment starts I’m sure you will begin to feel more positive, there are quite a few of us IBC ladies although I think we are all getting on with life at present, you will too after your treatment.

I was diagnosed 9 weeks after first finding a mass in my right breast, but I was told during this time that it was nothing serious. Eventually they decided I needed an operation and it was then they found it to be cancer, stage 3 IBC. I was lucky, my lymph nodes were clear but it was a hell of a shock.

My Onc and surgeon told me it is just one of those things, if it is going to happen it will and nothing you do or don’t do will prevent it.

My word of advice is don’t look at too many internet sites as IBC doesn’t seem to fair well, but on this and a few other sites I look at the statistics are getting better and better.

Good luck with your results and treatment. You will get through it because you have to. xx

Hi Jo

I was DX with IBC 3 years ago this saturday. At the time I really thought that I would not see that christmas, but hey I’m still here and although it hasn’t been an easy ride I’m OK and adjusted to the new ‘normal’.

My IBC had spread to my lymph nodes, in fact it was the enlarged nodes that first alerted me to the problems. I had 8 lots of chemo first, 4 x AC and 4 x Tax. Not easy but it had to be done and I came out the other end. Then I had a bilateral MX, full node clearance, radiotherapy and a year of Herceptin. When you see your team back at clinic they will give you a treatment plan and you will feel more in control. Ask anything you want either big things or little things. There are no silly questions, one of us will have had the same thoughts and worries and we will help if we can. Please don’t turn to google, there is so much out of date information on there and you will scare yourself even more than you are now.

Stay in touch, and let us know how you are coping

Take Care


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Hi Jo

Welcome, and what the rest of them said. Can’t add anything else that hasn’t already been said, but you have found a really supportive force in this forum which personally I’ve found to be a complete godsend.

Best of luck for your meeting next week


Hi Jo - no certainly not a compulsory death setence now! I was diagnosed with IBC 2 1/4 years ago with spread already to bones. And I’m still here nevertheless! So many new treatments coming along too that there realy is hope out there for a nearly-normal life once the initial rounds of chemo, poss. surgery and radiotherapy are undergone. So try to focus on the destination and not the bumpy journey ahead: it WILL pass…

Hi there Jo, welcome to the forums. Sorry you have had to join us, but the ladies here really are the best :slight_smile:

Big hugs. xxx

Hi Jo another IBC lady here , just completed 6Tax chemo , now waiting for surgery, full mastectomy,full node clearance then 3 weeks of rads,
on Herceptin indefinatley. Just had my CT scan results and the chemo has done a fantastic job , I have spread to lungs but the chemo has blasted all but one met and thats very small now, so all in all its been a tough few months but worthwhile .Keep your chin up you have a lovely supportive partner (read her post )its a new journey your embarking on but we get through it, the ladies on here are friendly and supportive , I don’t know where I would be without them !! We are the ones who understand how you are feeling better than anyone else so any worries just ask.
Big hugs to you.

Hi Jo
Welcome and as previously said this forum has been a godsend to me too, you can come on and ask any question at anytime and there will always be someone who has been through the same as you- good luck for next week
Lizz xx

thanks everyone!..i think i’ll be on here quite a bit :)…will let you all know how it goes on Tuesday, will spend the weekend house training the new Puppy!..:slight_smile: that will definitely keep me occupied xxx

Have a lovely weekend with your puppy, puppies are just adorable and such fun. We have a black labrador who is two now, we had him since he was 7 weeks old and it was such fun and so rewarding.


Jo come on here as much as you want, there will always be someone to listen.

We had an old english sheepdog from when he was a puppy, and he certainly gave us many years of love and companionship. Those first few weeks and months are precious and they will certainly give you plenty to think about other than your own siituation.

Take care


Hi Jo

Another IBC girl here. Diagnosed March 2009. suspicious spot on liver on first CT scan, nothing since but on herceptin indefinately.Had the usual treatment and am now going through the final bits that go with recon - reduction of other boob to match and new nipple on 12th Sept. Am feeling pretty good about myself and looking forward.

Any questions please ask - feel free to PM. Although I don’t come on here so often now - possibly because daughter has moved back in with us and has adopted my laptop!!! But will try and keep popping in when I can! Take care xxx

Hi Jo,
Just wanted to come on and say Hi, I am 2 years past treatment now comfortably out the other side, I don’t come on here as much now a days but I noticed you and Erin’s posts and just wanted to say hello, been with my partner 13 years and she has been my rock…I honestly couldn’t have got through all this without her and we sealed it all with our civil partnership in June…I know your head will be all over the place at the moment and I hope this forum will be of great support to both of you in the coming months…please feel free to PM me if there is anything you need to know, you mentioned living in Scotland, we do too…

take care
Fiona xxx

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Hi Jo,

Another Scottish IBC survivor here. I was diagnosed in March 09, finished treatment in Dec 10. Only thing I have to add to the others is that my golden retriever was a godsend for me. He forced me to go out when I didn’t feel like it. Especially after the worst of the treatment was over the exercise really helped my recovery. You’ve a bit to go before you get to that stage but he was also a great shoulder to cry on when my OH couldn’t bear it. Home alone with the dog I could let go and he just lay his head on my lap and listened.

Good luck with your treatment.

Jan xx

Posted on behalf of new user Mary:

Mary says on 23 Sep 2011 17:48

Hi My name is Mary and I am 66 years of age, I was given the awful news on Wednesday that I have IBC, I am terrified that I will not be able to survive. After diagnosis I had an ultrasound on my Lymph glands and although there were no lumps there was a"thickening" and the Doctor took a sample. I have attempted to contact the breast care team today for the result but no-one has called me back. Does anyone know what this “thickening” means? I would appreciate contact.

Hi Mary and welcome to the BCC forums

In addition to the support you will receive here shortly please feel free to call our helpline team where you can speak to someone in confidence, the lines are open 9-2 today and weekdays 9-5 on 0808 800 6000. We have published an information booklet about IBC which you may find helpful, you can order or download a copy here:

Best wishes

Hi everyone. My name is Erin and I am Jo’s partner.
When Jo was diagnosed back in August I posted in these forums for support.

Unfortunately Jo passed away early Wednesday morning due to her metastatic IBC. (After only 6 months) Her lymph system had become so blocked that she struggle alot with Pleural Effusion and she just became so exhausted that she passed away in her sleep holding my hand in hospital.

I wanted to post here to let all of you who had chatted with Jo know.
And hopefully after her funeral, I’ll be able to post a very detailed description of Jo’s experience with the cancer. I know that every woman experiences cancer (especially IBC) very uniquely and just because some people may share similarities with Jo’s case, doesn’t necessarily mean they’ll have the same result.

But I do hope that in sharing Jo’s experience, we’ll be able to shed some light on things that people may be dealing with. After all, that’s how Jo found out information on HER cancer…was through these forums.

Thanks so much to all of you who were so wonderful and positive to us both through out this horrible time.
I’m so glad Jo isn’t struggling anymore and is finally at peace getting plenty of rest.

Love and Blessings to all.