Wendy - i had a full nuclear bone scan in my first week… i think they threw the whole book at me as my breast was completely pink when i was first diagnosed… and yes so much of all this seems to be down to luck unfortunatly…
Theresa x
Wubbly, I did also make a comment on your other thread, but just in case you have missed it I found this post again.
Theresa and I are probably the two longest IBC people, along with Jackie who hasn’t posted for a while but has just recently had an operation, so hopefully all is well with her.
It is the luck of the draw, but they will throw everything they can at you to kill these awful cells off.
I had a nuclear bone scan and had to drink at least 2 litres of water between having the injection and actually having the scan. This is apparently better for the results and highlights any hotspots better. I wasn’t told to drink orange juice though, just water.
Both Theresa and myself have had other worrying issues since our original dx, fortunately we have been lucky to date.
Don’t worry too much about the length of time since you waited. I first found a strange small mass, and had several trips back and forth to different doctors, which included having a mammogram, an ultrasound and a smear of the blood I was discharging from the nipple, all of these results were clear. I went 9 weeks before getting the diagnosis due to all these errors and my breast grew like a honeydew melon in all this time and was as hard too.
Hello to all our other posters, hope you are doing as well as can be.
Carole (Peacock)
Thank you Carole, Theresa and Haxted for your replies. The mystery of the orange juice has been solved! It’s basically just to flavour the water which they add the dye to. I had to drink about a litre of it before going in for the scan then got another lot of dye into the vein, but all in all, 'twas a doddle. The injection sort of felt like the effect of a particularly potent whisky!
I’m relieved that it’s over and we can move onto the next step. I’m going to call my BCN tomorrow to find out what the timescale is for the next meeting with the consultant.
Carole, how long ago we’re you diagnosed? It’s shocking that you were passed around so much! Now I know what the symptoms are, it seems pretty clear cut that a woman presenting these symptoms should be checked out immediately, are GPs getting better at recognising it now or is it just the luck of the draw I wonder?
No one in my circle has heard about it before now, including me. I feel really lucky that my GP suspected immediately, but a bit annoyed with myself for feeling so complacent about it and leaving it so long to get it checked out. It seems the symptoms are the very opposite of everything I ever thought about breast cancer. I know it’s rare, but I think amongst the pre menopausal group it makes up quite a large percentage of cases? I don’t understand why we don’t hear more about this as young women, particularly since it’s so aggressive.
I think the information is beginning to sink in a bit now. I’m feeling fairly positive now that I will be one of the lucky ones, although that is subject to change at a minutes notice!
This forum and you ladies have been a great support in helping me get through these last few days, it’s so reassuring to hear some good news from you all. Thank you xxx
Wendy
Hi Wendy = glad to hear that the scan went well…
I was diagnosed in May 2008 and Carole in June 2008 although as she said it took awhile until she was told it was actually IBC… My gp was convinced i just had some sort of infection - even though the first words out of my mouth were “I think i have inflammatory breast cancer…” in his defence once i was diagnosed i discovered i was the first ibc patient at my hospital in four years… so i guess my gp has never seen ibc in his life before… also when i was first diagnosed a friend mentioned about it to her husband who is a gp and he had never heard of it… infact he was really horrified as he would never have realised what it was if a patient turned up with it at his practice so he made a point of telling the other staff at his practice about it and what to look out for… I think that is one of the reasons ibc has such poor survival records in the past - people just didn’t know what they were dealing with… plus the treatment years ago was to do an immediate mastectomy - which just spread the cancer cells around the body… now they are having much better results by killing the tumour first with chemo and then really hitting it with rads afterwards…
Hopefully you will soon get news on when chemo can start - i felt so much better when i knew i was fighting back…
Theresa x
Oh should explain why i suspected it was ibc straight away… i come from a family with a really bad history of breast cancer and used to have to have annual mammograms and check-up with the breast team anyway… and they had told me to look out for pinkness and dimpling etc as well as the usual lumps… lots of family members died in their 40’s from breast cancer and i don’t know if any of that was ibc… unfortunatly anyone who could have told me about their symptoms etc has already gone…
Theresa x
Hi Wendy, glad to hear that your scan wasn’t too bad for you at least it is over with now.
Theresa has told you when I was dx, in my case I think I was just very unlucky that the GP I had then couldn’t be bothered to investigate further, the mammogram and ultrasound were clear to the radiographer who looked at it so she put it down to hormones and gave me some cream to rub in! Cream - ha!
When I did eventually meet the oncologist after the dx he could see the tumour and pointed it out to me straight away, so I think it was just down to an untrained eye. My initial dx was IDC.
I was only diagnosed with IBC following a breast abscess in the spot where the biopsy had been done, my biopsy was complicated in that it was supposed to be a minor operation to remove the milk glands, but of course once they opened me up they realised it was serious.
A good thing, if there is something good about it, is that aggressive tumours usually respond well to chemo.
Take care, one thing to tick off the list now!
Good morning ladies!
Well this morning I’ve spoken to my BCN and she’s told me they’ve booked me in for a mastectomy on 15/16 March. Now I’m totally confused!
Has anyone else had the mastectomy first?
I thought with IBC that the best prognosis came from whacking you with chemo first, before the op, but the BCN has said that it all depends on the results from my scan. She said that, if they can do the mastectomy first, it means they have enough tissue for analysis so that they can include me in clinical trials for a special combo of chemo directly suited to attacking the type of cells I have. I suppose that makes sense if they can do it.
Has anyone any info or experience of doing it this way?
Hope you are all feeling well this morning xxx
Wow Wendy that really is totally different to anyone else on here!!! Do you mind me asking where you live? Whether your hospital is one of the larger ones which is likely to trying out a totally new treatment etc… Did they give you any idea at all how large the tumour is at the moment…? There was one lady on here Shellyface that had an “early” mastectomy but in her case it was because chemo was not working and the tumour was continuing to grow and spread…
I would give the helpline on here a ring to see if they have any advice - but what your hospital is suggesting is the total opposite of everything i have heard…
Theresa x
Wendy i have just posted on an old thread on here for you to bring it back to the top of the IBC section… it is a thread called IBC watch and it is a site that collates all the research on IBC… hopefully it should give you some back up on talking to your team about doing the mastectomy first etc…
Theresa x
Hi Theresa, that’s exactly what I thought, but being all new to this, I wasn’t sure.
I’m in the North East, at the Queen Elizabeth Hospital, I’m not sure what their standing is on breast cancer care, or where to look for that kind of information.
They haven’t said how big the tumour is, I suppose they would know this now from the ultrasound I had last wednesday, but they haven’t told me yet. I asked the BCN if they had my CT scan results and she said they have them, although she hasn’t seen them and it sounds like the consultants only view the results on certain days of the week.
She did say having the mastectomy would depends on the results of the CT scan but I was totally surprised that they’d made the appointment at all because this just wasn’t what I was expecting. I’m going to check out the other thread you’ve bumped for me (thank you Theresa).
I’m torn between thinking this is really good news, i.e the lump is tiny (but feels huge???) and totally safe to operate on or, on the otherhand, they really don’t what they’re doing!
The BCN has said it’s always been usual to do the chemo first in these cases in the past, but that this type of treatment means they can use chemo specifically to target the type of cancer cells I have if they do the mastectomy first.
Hi Wendy - i am in the North East as well… I live in Northumberland so my treatment was at the Wansbeck in Ashington… Is your hospital the one at Gateshead…? I was wondering whether they were doing it this way as the lump is very small… I had my chemo and ops at the wansbeck and my rads at the new Northern Counties centre at the Freeman… would it be possible for you to get a second opinion at the Freeman as well…?
I must admit i worried whether my team were making it up as they went along as they hadn’t had an IBC patient for so long but i looked up research articles etc and the chemo and number of rads i had etc was exactly what the latest papers suggested for my size of tumour, hormone type etc… (although i realise that is now almost 2 years out of date…)
Theresa x
Reading your post again it is interesting that you mention they could include you in clinical trials which suggests they are trying out something new… I guess that would mean you deciding if you were okay about being included in trying out a new idea and they should really explain that to you in full detail rather than try and railroad you into something…
Theresa
Wendy - we’ve got a thread on here for those of us in the North East… breastcancercare.org.uk/forum/hello,-anyone-from-north-east-about–p399818.html#p399818 we are hoping to meet up again soon… (i’ve met Daisyleaf (Monica) twice now… she is also a patient at your hospital i think…)
Theresa x
Thank you Theresa, you really are a star!
I am at the QE in Gateshead. I’ve spoken to the helpline and had a chat with a really wonderful lady (the support I’ve found since Wednesday has been nothing short of amazing).
I’ve now spoken again to my BCN and found out the following:-
My CT scan results show clear, other than the one lymph node that they have biopsied. There are small some spots on the lungs but nothing to indicate any spread of the cancer (I’m asthmatic, so possibly due to that or small warts etc) Also something in the adrenal gland, which needs to be double checked by MRI, but probably something I’ve always had, CT scans often throw these curiosities up. Nothing at all in the bones or liver shown. I’ve also got a a small hiatus hernia. So totally positive, fantastic news there.
My biopsy results ‘indicate’ IBC, although they’ve only tested one cell and (so I’m told) cells removed by biopsy are usually insufficient to give a clear result as there isn’t enough matter to test sufficiently.
I have 2 lumps, approx 60mm and 70mm, they can’t say entirely what is cancer and what is inflammation.
The idea behind doing the mastectomy first is, I’m told, due to very promising results from recent clinical trials for certain patients, which it seems I might fit the criteria. If there was any sign of spread, it wouldn’t be considered. If, after hearing what they have to say, I want to do chemo first, then they’ll do it that way, assuming the onc. agrees, although it may take 6-8 weeks to get chemo started (that sounded like a veiled threat maybe?)
When I asked how that would fit into the 31 days principle, she said it was very, very difficult to meet those targets, particuarly it seems if I want to deviate from their proposed treatment.
So, next step is MRI scan to check out this adrenal thing and also a bone scan to be doubly sure, then they’ll have a multi discipline meeting and decide what course of treatment, meet me again (11th March probably) and then operate on the 15/16 March.
I’m still not sure about the mastectomy first, but the BCN has assured me they all want the very best outcome possible and that they wouldn’t be considering it this way if it wasn’t what they all agreed would be the best option.
Don’t know why I still have a little nagging voice thinking they just want my boob pre chemo for their research.
I’m thinking about a second opinion, not sure how I’d go about that without delaying the whole process. I’m going to try to read a bit more from that link Theresa and see how I feel then.
Big thank you for taking the time to listen to me ramble on and STILL offer your kind guidance and assistance. Thank you!
Wendy
xxx
Ummmm… I would suggest that if there is a choice of treatment,then the choice is YOURS, Wubbly - not theirs. An informed choice but still yours and there should certainly not be 6-8 weeks delay if you opt for chemo first…
I am on a trial and was given absolute choice over the mainstream treatment and the documented promise that choosing not to do the trial would in no way impact my treatment…
However, I have heard about this trial you are speaking about - it was on the news just today…I hope you can get the information you need to make your choice and that you are not, as already mentioned, rail-roaded…
So pleased thet your CT scan seems “good”!
Wendy - have to agree with Haxted - any treatment decision has to be yours… i know i have probably been heavily supporting chemo first - i think because op first just goes totally in the face of everything i have read about IBC in the last 2 years… One thing i am certain of - they can not use the “threat” of chemo taking 6-8 weeks to almost force you into doing what they want op first… If this is a clinical trial there are very strict procedures they have to follow… You have to be given a written copy explaining what the trial is and also saying that if you decide not to take part in a trial this will not affect how you are treated… Before i was diagnosed i was very involved in the setting up of an autism database here in the north east (my son is autistic…) and was on the protocol, reports and research committee for it… and we spent many an hour discussing medical ethics procedures and how strict they are…
As for it taking 6-8 weeks to start chemo… sorry but that is crazy… i started exactly one week after diagnosis yes they might have to do a heart scan to check it is up to chemo - but that doesn’t take 6-8 weeks… One thing my diagnosis showed me is how quickly the NHS can work when needed…
Theresa
I don’t know if you would like to start another thread in the main part of the forum asking for other people’s experiences of being asked to be on a clinical trial… in particular i know many of the ladies on here with secondaries have lots of experience in this area and know what is and isn’t allowed…
Haxted, thank you for that. I’ve checked out the BBC news page and found the clinical trial item, that does sound like what my BCN has been talking about. I can see that it would be really beneficial research in helping to get the right treatment and I think I would like to help out. My only nagging concern is am I right for the trial. I just can’t decide at the moment as everything I’ve read in these last few days states over and over, chemo first, mastectomy later. I think I’m going to have to start up a list of questions I want to ask.
Do you mind me asking Haxted, what clinical trial is it that you’re taking part in? It’s not really something I’ve ever heard of before and I’d really like to understand exactly what it is that happens.
Theresa, I think part of my concern is that I do feel like the decision has almost been made for me. I’m even wondering if perhaps the BCN is getting ahead of herself and it’s not going to be an option for me.
Right now my brain is hurting with all the information I’ve had today, even though it’s mostly great news!
I think I will do as you’ve suggested re a new clinical trials thread but I’m going to save it for the next few days, give my poor mind a chance to rest!
And I must get to the chemist for some Bachs Magic Medicine!
I’m on ZICE trial, Wendy. It’s to compare oral v. intravenous bone-strenghthening drugs (bisphosphonates) for ladies with bone secondaries.
Just occurred to me that a question you could ask is that whilst the trial they are proposing is just what is needed for targeted chemo research, is a lady with the INFLAMMATORY breast cancer a wise candidate??? If they could answer that then you might have some peace about making a decision?
Hi Haxted, fingers crossed that your treatment turns out to be the one.
I’ve got my Bach’s and must admit it’s had a really rather nice calming effect.
I’ve got my appointments for Bone Scan and MRI for next week, followed up by another meeting with the consultant to go over the results and agree treatment.
I’ve totally misunderstood the BCN it seems, I’m not being put on a clinical trial, sorry for the confusion, I think I’m struggling to process all of the information.
They are considering a mastectomy first based on my results to date and the results from recent clinical trials. If anything comes back differently (shows some spread I assume) then they probably wouldn’t consider it.
From this, I’m reading that it’s fairly good news so far, that they are even viewing this as an option, although obviously I’ve still got some questions because it does seem an unusual approach to take with IBC and I hope I’m not just kidding myself!
I actually told someone outside of the family today and found out she had a friend of 30 who was diagnosed with IBC last August. Her GP sent her away twice before eventually agreeing to refer her, but because he didn’t think it was anything of concern, it took another 8 weeks to get her appointment! When she eventually got her diagnosis, it was already in her lungs. I can’t believe that this is still happening to people even now.
Wendy - i think that is one of the problems gps have just never even heard of IBC… it is amazing the number of medical staff i have met who have never heard of it…
Hope the bone scan and MRI go well… the mri is a bit claustrophobic and very very noisy… The bone scan was okay just a bit of a pain as i had to come home for a couple of hours after they did the initial injection before they did the actual scan in the afternoon… are you going to the Freeman for those…?
Glad the Bachs is working its magic… x
Theresa x