It must have been a real shock having it reappear so quickly, you must have been devastated. Did you have any follow-up treatment after the mastectomy?
Theresa and I both had a mastectomy a few weeks ago. Despite a good pathology report I still feel I can’t relax. My radiotherapy is due to start on 4th November followed by a year on Herceptin. The upside is that I’ll be checked by the breast care team every 3 weeks for at least the next year. If it does come back it should be picked up quickly. It would be nice to think I could have a bit of normality for a while though.
I hope you have better luck with your recovery this time.
Thanks for your support. Hope you are recovering well from the mastectomy.
My recurrence happened less than four weeks after the mast, so hadn’t had time to get to Radio-T. Been on R-T for two weeks now and, touch wood, no more lumps!!
I agree with you - I had an excellent Path report, but won’t relax until I get the Radio-T under my belt plus a couple of months with no recurrence.
I think I’ve replied to you on another posting already but just in case you missed it…
My local recurrence appeared during rads, so I had a WLE on my mast scar within 3 months of the mastec. Unbelievable really!
I’m pretty sure that for me this was the cause of my skin mets as they’d originally had concerns about closing me after my mast, so not much skin to play with second time around.
Apart form these pesky mets I have had no further lumps (touch wood) and it’s 3 years since my surgery next month.
Hope all continues to go well for you,
Love
Jackie x
Thank so much for your post and support (think I missed your other posting).
My recurrence was very similar to yours (within four weeks of the mast!). I also had little excess for covering, which caused a few problems.
On a much more positive note, I am now 2/3 through R/T and no more lumps. It’s very comforting to hear that you are three years down the line - great news!
Very new to all this so not really au fait with all the terms and such, but was diagnosed with IBC yesterday. I’m totally shellshocked, I had convinced myself it was nothing more than a cyst.
I really don’t even know what questions to ask (well really all I want to know is that i’ll survive this)
They did a needle biopsy on the lump and lymph nodes, results show cancer in both. I need to have a CT scan to see if it’s spread, hopefully that will happen next week then there’ll be a meeting to discuss how to proceed, chemo and mastectomy but need to decide what order etc.
I’m 41. My lump appeared about six weeks ago, just like a cyst but didn’t go away after my period and just kept getting bigger, no redness or puckering but my breast has now swollen a little. No-one would give me a prognosis, probably too early I suppose, but I’ve got a little boy of just 3 and I want to know that I’m going to be here to see him grow up. Feeling totally devastated really.
I am sure your fellow users will be along shortly with support and their experiences. You may also find BCC’s inflammatory breast cancer publication helpful to read, here’s the link:
Our helpline is open weekdays 9-5 and Sat 9-2 on 0808 800 6000, you are welocme to call for further support and information from our specialist nurses and trained helpliners.
Our Mummy’s Lump book may help you to talk to your little boy about what is happening at the moment if you feel this is appropraite for him and you can order a copy here:
Hi Wubbly - so sorry that you have had to join us but welcome… x
It is such a surreal shock at first isn’t it…? I remember when i was first diagnosed i found out at the one stop clinic and had to go back the next day to meet the onc and when she said have you any questions like you there was just one… am i going to live…
I think you will almost certainly find it is going to be chemo first as that is what all the rest of us with ibc have had… i had 4xac then 4xtaxotare (it is also called docetaxol) then mastectomy and then radiotherapy… the chemo took 6 months… chemo seems to affect people differently some sail through it and others get side effects but it is doable honestly… {{{hugs}}}
Please don’t try and read too much on the web about IBC as alot of the stuff out there is very frightning and very out of date…
Do keep posting we are a small group on here but very supportive and will try to help you along the way as much as we can…
Hello Wubbly and welcome to this forum, although I am so sorry you’ve found the need to join us.
It shocks me how many new IBC ladies seem to be coming on the site, considering it is one of the rarer types of BC. I was dx in June 2008, had chemo, then a MX, then 5 weeks of rads. I finished a year of Herceptin in July last year.
I knew nothing about BC let alone IBC when I was diagnosed and believe me, it was a shock, probably like you are feeling right now. I had a bone scan, a liver scan and a lung xray which were all clear.
I was a lucky girl, although it was 9 weeks from finding my mass to the actual diagnosis (I had been misdiagnosed by 5 different specialists) I didn’t have any spread and all my lymph nodes were clear.
There are some of us who have had good results from our treatments. I am hoping to have reconstruction this year and hope to have a body like a 16 year old, even though I am 52 - shame they can’t do anything about the double chin and wrinkles tho.
Feel free to come and join us anytime, post any worries you have there are quite a few of us around to advise and I’m sure others will be along too to welcome you.
Hallo Wubbly - I can reassure you that you will be well supported here and can ask any questions you like. The site and the ladies have been a great source of both support AND info for me since being diagnosed myself last April.
I found out a lot about what to expect etc by simply reading through
all the IBC threads - but be warned - it’ll take a while!
Can I just reassure you maybe before you read them, that advances are being made all the time in treatments. I know how afraid you must be at the moment but there are many of us whose experiences may help de-mystify and so remove at least some of the element of fear…
Thank you Theresa and Peacock, for your quick replies.
I’m afraid I did read something I should have avoided, I was looking for info on the lymph node biopsy as I was beginning to think I’d imagined this. So much to take in I suppose.
There’s a few things on my mind, like could I have had this before I got the lump? Does the fact that I’ve only had the lump around 6-8 weeks mean I’ve got it early? As it’s in the lymph nodes does that mean my prognosis is worse?
Realistically I know that you ladies can’t really answer all of these for me and I suppose I’ll ring the BCN tomorrow to go over these things. Like you say Theresa, I just want to know that there’s a reasonable chance I’m going to get through this. They haven’t said anything along those lines to me so I’m reading into the silence I guess.
Peacock, I think the thing that has shocked me so much is that this isn’t anything like I thought breast cancer presented itself, in fact none of my friends and family knew anything about IBC, we all seemed to think, it’s big, it hurts, it’s harmless. I wish I’d known more, I would’ve had this looked at straight away instead of waiting for periods to go and snow to disappear before I saw my GP.
I’m not really worried about chemo or mastectomy tbh, I don’t care, I’ll do anything, I just want to beat this and see my little boy grow up.
wubbly - as you say the main concern at first is finding out if it has spread anywhere else - hopefully not… they won’t be able to get a full picture about the lymphnode spread until they do the lab results in 6 months but they should be able to tell you fairly soon if your tumour is hormone receptive er - oestrogen and pr - progesterone if it is you will have tamoxifen after you finish rads (normally for 5 years although they swap to other similar drugs if you go through the menopause in the meanwhile…) they also test to see if it is her2 positive and if so you get herceptine like Peacock did for over a year… (that result seems to take longer to come back)
It really is hard to say how long the cancer has been there… but ibc does grow really quickly compared to most cancers so you really are more likely to be talking a couple of months rather than months and months…
My unit were very honest with me from the start - that we were dealing with something very serious… i think they were happier once we got in all the initial scans that it hadn’t spread anywhere else… I did ask my onc my prognosis once i finished rads and she said she couldn’t say… to be honest once you have been here on the site awhile you will notice that there are good stories about people who had dreadful initial results and sadly there are people we have lost who seemed to have brilliant initial results (this is not just the ibc section…) but please try to not look too far ahead…
Me and Carol (peacock) were diagnosed around the same time and i know we both tended to only deal with the part we were dealing with and then moved on to the next stage…
Good idea to ring the bcn to discuss it all abit more… and also good idea to take along a note book to the next appointment to write things down and get them to confirm what you are writing down as it is so easy to forget what they have said… Also have you got someone to go along with you as a spare pair of ears is also good.
Thank you Theresa. I know you can’t tell me I’m going to be okay but somehow your words are still very reassuring. Maybe it’s just knowing that you’re coping with it all, at the minute I’m in total denial that it’s really happening to me or being overwhelmed with the sickening reality of it. I can’t seem to be able to get a logical approach together just yet, but I suppose it’s still early days.
My husband is being very supportive, he was there with me and he’s managed to retain a few details that seem to have gone right over my head, particularly the more positive comments which it seems I’ve not seemed to take in at all.
I suppose right now the diagnosis and uncertainty is just swamping me, leaving little room for real life and rational thoughts. I’m hoping things will settle down again and this thing can stop occupying my every thought. I’m feeling absolutely worn out by the whole experience but getting off to sleep isn’t easy, nor can I seem to concentrate on a book right now either, so it’s hard to switch these damned thoughts off!
I had a large G&T last night, that worked, but it’s probably not a good idea to continue that method long term!
The first week was when i found it all the most frightning - until i got the all clear and began chemo… what i found really useful that week was bach rescue rememedy… it really did work wonders… the strange thing was once i got that all clear and began chemo i never needed it again… I know other people have got sleeping pills off their doctors… i know you might feel resistant to that but remember you are in a totally unique position you have never been in before and some things just go out the window for the next year… To be honest alot of us end up having to have sleeping pills prescribed once you are on chemo as you have to take steroids that can make you awake all night and i know with a little one you will need your sleep…
I’m glad that your husband, family and friends are supporting you it really does help to have back up…
So sorry you’ve had to join us but as you’ve already seen the ladies on here will give you a lot of help and support.
It’s almost a year exactly since I was in your position but I still remember it as if it were yesterday. I have used Bach’s Rescue Remedy for years and it worked for me in the early days. After chemo I resorted to Temazepam to help me sleep. Rescue Remedy would help me to drift off but the night sweats from the chemo induced menopause were waking me up every hour.
I’m lucky enough to be one of the good news stories now and planning to return to work on Monday. I can’t say I feel the same as I did before but happy to be alive and well enough to enjoy life. Onc has refused to give any kind of prognosis but for the moment I’m cancer free. I’m also lucky enough to have Herceptin which has hugely improved results for long term survival. (If your tumour is HER2 +++ it will be part of your treatment too.)
I found the stage you are at now the hardest too. Not knowing is really tough on the nerves. Once you have all your results and your treatment plan you can focus on getting well.
Before my diagnosis I was a 2 book a month reader. I found it really hard to concentrate while having all my treatments and have only just got back into reading books. For a while all I could manage was leafing through magazines. I did manage to listen to talking books while in hospital though. I also enjoyed the odd glass of wine (or 2) before. I found that I had to give it up in favour of lots of water for 10 days or so after each chemo session. That left 1 week where I could have the odd drink. Now I can’t seem to cope with much at all and restrict it to a Friday night because I know I can have a lie in on Saturday to recover.
Hi again everyone. My GP has managed to get me in for a CT scan on Sunday morning, so massive relief all round.
Not sure exactly when I’ll get the results back, but I’m happy that things can get moving along now and I should be to see the consultant again and start getting treatment!
Jan, just noticed your message - thank you so much for that! I’ve got a voracious appetite for good news right now, so absolutely brilliant to hear your story. Really wonderful.
I think I’ll look into Bachs, I’ve heard of it but didn’t really know much about it, but it sounds like it has helped a few of you out, so that’s one for the list.
The other thing I’d not thought of is listening books, that might be just the thing to keep me off the t’internet searches and help me to relax. A brilliant idea, thank you, I’ll check that out at the library tomorrow - something else to do to keep me occupied! Any recommendations would be gratefully received.
Scan on a Sunday - my how pro-active! Be encouraged that things are moving quickley! I’d be surprised if they wait for scan results before chemo starts though (as you intimated earlier); with IBC they tend to whack it quickley to treat the WHOLE body first to mop up any cells which may have already broken away. Kind of shoot now & ask questions later approach… I was in for chemo a couple of days after diagnosis and scans came a couple of weeks later…But that was 10 months ago now & things do change with ongoing research so don’t be perturbed if your treatment differs…
Just to reassure - CT scan does not hurt - just a tad long-winded especially if you having the sort where you have to drink a jug of water for an hour beforehand…If you’re having it “with contrast” then you’ll have a line put in your arm to allow the contrast fluid in. Just feels like an odd warm whoosh through your body for a few seconds…
Hi Haxted, thanks for your post. I’ve been told I need to drink something a bit like orange juice half an hour before hand, is it a dye or something? Anyway, the lady said it’s just my chest and upper abdomen, so it’s not going to be longer than about 15 minutes once they get started. For some reason I thought it would be a full body to include bones, but maybe that’s unneccesary?
I’m coming to terms with it slowly and feeling okay about it all at the minute. I think I’ve accepted now that it’s going to be a long and complicated process and that luck and chance seem to play a big part in the prognosis. Now that things are underway, so to speak, I feel able to stop the frantic worrying a little and just deal with each day as it comes instead of thinking too far ahead. xxx
Afraid I can’t comment on your orange juice - maybe someone else will know…
The chest/abdominal CT scan is to “look” at your organs (lungs, liver etc) but it did show up “hot spots” for me in my bones. This then led to a separate nuclear full body bone scan to have a more detailed look. They don’t tend to do scans without reason as each exposes us to high doses of radiation…
i hope things go well now… {{{hugs}}}