Support for new IBC Somerset Lady

Public Archive
1

HI All - I dont usually join forums but feel its the right site for further help, especially as JanB, Haxed and Pash who have been very informative and sharing.

My story

I was diagnosed Mid Aug 09 with IBC 10 days before getting married by the captain on a P&O cruiser with 2 celebrations planned when back in UK. (yes he went ahead and stil married me) Yeovil hospital let me go and put me on arimidex as there was a delay of three weeks before treatment to the grade 2 cancer of my breast and lymphnodes - They later said this was receptive so Hormone positive.

Started chemo FEC 2 days after returning from Honeymoon, cold cap cooling so my vanity could be saved for the 2 celebrations and it worked until they were over.

I am a very appearance conscious 52 year old looking much younger and chairman of tons of semminars in a male environment. I was blessed with very thick manageable hair, long legs, (used to be a dancer) and known as Dee for my two perfect 40" double dee breasts - so this is very difficult to come to terms with as I am sure you all have had to make that jourey.

4th FEC session last weds - My onc. at Yeovil (who have only treated three people with IBC) said no more chemo now and wants surgery in three weeks time 9th Dec - unlike most of you who had 3 Fec and then changed chemo to different sort. I hope he is not making it up as he goes and during sessions with him I have to keep reminding him its IBC ? He says the team think I should move on now as I am responding to chemo and want me to have surgery then another 4 chemo sesssions before Rads for 5 weeks ? which seems so different to what you guys are saying. Has anyone followed this regime instead?

I have to choose to go NHS or private, just cos I am a financial adviser and have the cover. I shortlisted Yeovil, Poole, Bristol,Marsdon,Bath from what I hear locally and this site - but keen to find a surgeon to talk to that has IBC experience - as you have enlightened me to the difference in this type of cancer and treatments - getting ready for rads after surgery and the dreaded serotoma issue - all though have no idea if this will also delay chemo my onc suggested before rads…

I dont know if the private cover allows me to have reconstruction private either yet as it may be classified as cosmetic and not within the same 12 months, we shall see when I ring Monday if I stop being sick, as I was devestated to find I would have to wait this long to do reconstruction - I have clients that have not had IBC and thought I could cope with the same treatment at they had but this is very different to the norm isn’t it undortunatly.

Any help on chemo after surgery before rads or stopping chemo at 3 or your surgeons that had experience of this IBC so I can move as I only have a few weeks to decide otherwise Yeovil Dr Nyiash will do 9th Dec NHS or private my choice…

Thanks wishing you all well too

Dee Dee

2

Hi Dee Dee,

Sorry to hear you’ve joined the club. I have found this forum invaluable and I hope you do too. IBC is a bit different and it does help to hear from people who have been through it before.

I’m sorry that I can’t really help on any of the main issues you raised since my experience has been very different to yours. I live in Scotland and my treatment, although carried out locally, has been directed by the Beatson, West of Scotland Cancer Centre. They have a very good reputation and wide experience because they cover a huge area: but that’s not much use to you. I can say that it’s standard practice in Scotland for IBC patients to have the 3xFEC, 3xTax regime before surgery. That said, my oncologist told me they can tailor it depending on individual response.

Your medical team should be confident that your tumour has reduced enough in size to carry out the surgery. If they haven’t discussed that with you then I would ask them. Also, do your oncologist and surgeon work closely as a team and have they both agreed that surgery now is appropriate? One of the main advantages of the Beatson is that surgeons, oncologists, plastic surgeons and breast care nurses all work together in a team and hold case conferences before each treatment. If you can find a place where they work like that I would opt to go there.

I would be very surprised if your insurance classes reconstruction as cosmetic. NHS don’t consider it so. You might also find it is the same plastic surgery team who would be carrying out the consultation and procedure regardless of whether you go private or NHS. If it helps to know, my plastic surgeon gave me the option of having immediate reconstruction if I wanted it. I decided to wait because the rads can sometimes damage a reconstruction and because the recovery time is much longer. She didn’t influence my decision but said afterwards she felt it was the right one. The main problem I have come across since surgery is finding suitable bras. I am a 32FF and can only get underwired bras in that size. After surgery you need to wear soft cup bras for at least 6mths to allow your scar to heal properly. I would have this problem whether I had reconstruction or not.

Sorry this has been a bit of a long ramble but I hope it is of some use. I’m sure there will be one of the others along who can give better advice about procedures in your area.

best wishes whatever you decide.

Jan xx

3

Hi Dee

What a lovely description for your boobies LOL. I am sorry that you find yourself here, I’ll be brief with my experience and although I live in France, I think most treatment is the same for IBC, as in neoadjuvent chemo before MX.

I was dx in June 08, with 8cm+ grade 3 tumour (after being misdiagnosed by 5 different doctors and told it wasn’t cancer). I started chemo the following week, the hospital I first started with cocked up by starting me with taxotere, I was told I would have 8 rounds in all, 4 of tax and 4 of epi. I changed hospitals in August and was referred to a centre of excellence (like the Marsden) and continued chemo and started Herceptin too. By the 6th round my body had taken enough, but my tumour mass had shrunk to around 2.5 cms, they couldn’t put me onto another chemo so it stopped at 6 rounds and I had the mx in November. Then in Jan started 5 weeks of rads.

I was told in the beginning I would have to wait for 1 year to have reconstruction, and have just had my first appointment with the surgeon who seems to think I am a good candidate for the tummy tuck type.

One year on from the op I still feel physically drained some days, but try to walk and get some exercise every day weather permitting.

On the plus side my cosmetic surgeon is gorgeous and looks just like Jenson Button the F1 driver LOL. I haven’t been able to wear a bra with a prothesis because I am large boobed too at 38 F, and I was left with a rather large bulge of skin just on my side and a bra rubs this causing soreness. So I can’t wait to have recon and start looking normal again without one big boob flapping around and one side with nothing but lumps and bumps.

Please ask if you have any queries and no doubt Theresa, Jacqui and Andie are all bound to be along soon to add to this thread.

Take care and good luck with the rest of the chemo

Carole

4

Hello Dee,Heres another experience for you to ponder on(yawn yawn). I was dx with IBC Nov.last yeat,had 6 FEC,mx in May followed by 3weeks rads in June/July and prescribed Letrozole for 8years. At my initial diagnosis,my surgeon said,"its not the BC youd chose but theres a lot we can do,we aim to cure." I didnt read up on it and my chemo went without a hiccup,after my op,I joined this site and saw that IBC is regarded as a lot nastier.However Im progressing well,
my Onc doesnt want to see me till March,my surgeon sees me in Jan. My (very honest) McMillan nurse when I asked her the meaning of IBC said its just in the way it presents itself because of the inflamed breast at the beginning,I hope shes not just placating me,Im just
starting to feel really well after acclimatizing to Letrozole and recovering from rads which was the worst bit for me. I think too much knowledge can be a dangerous thing,just go with what they recommend Dee,this time next year I hope you`ll feel as well as I do.
Love and best wishes Mags x

5

Hello Dee Dee,

I was dx in Oct 05 and had the usual regime for IBC,neoadjuvant chemo, 4 X FEC, followed by 6 X Taxotere.
I have not heard of stopping chemo early for surgery, but it’s possible thoughts have changed and this could be the latest process.

I’m under the London Marsden, consult onc is Dr Steve Johnson. Dr J has a special interest in IBC can you ask for a referral for a second opinion and get his viewpoint?

Best wishes,
Jackie x

6

Hi Dee Dee - sorry you have had to join us but welcome…

One thing i wondered - how large was your tumour to start with…? just wondered if they found it when your’s was smaller than the rest of us and that is why it has managed to shrink to an operable size quicker…?

like most of the others i had 8 chemo cycles before the op… 4 x ac, 4 x taxotare in my case…

i would give the helpline on here a ring and see if they can help… i know what you mean about being unsure if your unit know what they are doing… i was the first ibc patient at mine in 4 years…

take care

theresa x

7

Hi Dee

I was DX with IBC August 08 and started chemo more or less immediately. For me the regime was 4 x AC and then 4 x Tax. The surgeon and the onc worked together to monitor the shrinkage. I was examined before each chemo and the mass was measured manually. I also had MRIs before and twice during the 6 months.I was lucky in that chemo was oviously working and the mass was shrinking. The onc did mention that if they suspected that the chemo had stopped doing its job they would go for surgery earlier. I had surgery Feb 09 and was unfortunate that I then had my rads delayed because of seromas. It went ahead April/May. I was aware that chemo sometimes went before and then after surgery but can’t remember where I got that information. The helpline here will do their best to reassure you.

For me rads was stressful because I had to travel some way for treatment, my own hospital does not have the facility. I am currently suffering with on going swelling/seroma/lymphoedema problems but that is just my body misbehaving itself.

Ask anything you like, we will try to answer, as you have found out IBC is uncommon but this site has proved to be invaluable to me- there is usually someone who has the answers.

Take Care

Andie

8

Hi Dee Dee,

I have been down the 3xFec/3xTax chemo first route followed by surgery then radiotherapy since diagnosis at Easter this year. I do recall them saying at the outset that surgery would come sooner if it didn’t look like the chemo was having the desired effect. For us IBC ladies, I understand that chemo-first is not just about shrinking the primary tumour/s but doing an immediate mop-up of cancerous cells which might have already broken away from the primary tumour before they can settle elsewhere in the body. They don’t want to delay this mop up by surgery UNLESS it’s not being particularly effective in which case they’ll interupt chemo to remove the primary tumour/s. Don’t quote me on this!

However, I did have my final chemo in Poole Hopital sat next to another IBC lady who was actually under a consultant at Dorchester Hospital. She was NOT having the surgery bit. When I queried this different route with my consultant, was told that different consultants have different approaches…Not particularly reassuring to hear but I was glad that I was having the breast removed…Between us, we figured it must be to do with tumour size: hers was small, mine larger (& two of them.)

I’m 51 and not really bothered about reconstruction - another operation and recovery… No thanks! I’ve bought some fantastic mastectomy bras and the prothesis I’ve been given is fine. The hair loss, nail loss, breast loss etc has taught me that I’m not defined by the way I look! I hope you too can find the courage (whatever your decision about reconstruction) to celebrate who you are and not how people see you!

I’m fortunate in that Poole Hospial is very close by so daily trips for 3 weeks of radiotherapy starting next Tuesay will not be too arduous. Andie is right to mention this aspect when you come to consider where you have treatment as travelling long distances each day can in itself be tiring.

There is an on-line version of the NICE guidelines for breast cancer treatment (if you have about a day spare to read them)and IBC treatment appears, if I remember, around page 83. I wonder if it’s worth having a look and and waving it at your consultant if it’s vastly different from the aproach they’re taking?

Best wishes!

9

Hello
I was diagnosed with IBC in Oct this year and four days later started chemo.
Unlike most of the posts in this forum I was categorically assured that I could have any number of second opinions but that wherever I went I would be prescribed the same chemo regime which surprise, surprise is like no others mentioned here!
I was started on TAC, not ACx4 then Tx4,sequentially, but in combination and predicted for six cycles.
So far my ultrasound scans are showing reduction in sizes of three areas, and I start my third cycle tomorrow.
Having also researched the regime I have also requested chemo every two weeks instead of three ( BMJ review 2007)also known as dose dense, which apparently gives better outcomes.
I am fortunate that ny side effects are currently manageable and I have a supportive MDT. It is alarming though that others are not on this routine.
I absolutely refuse to look at survival rates, prognosis or similar data.
We are all individuals with carefully tailored treatment plans.
Data is historical and not applicable to us as individuals, so please please please
BE POSITIVE AND OPTIMISTIC!
If you are in any doubt consult another onc for a second opinion and quickly. IBC is rare and aggressive and treatment should be appropriate and timely.
Might I suggest if you are in Yeovil try Charles Hamilton in Southampton, the Wessex Cancer Trust? He has experience of IBC and a good reputation.
There is also a Prof D Sinnet at Charing Cross Hospital, London.
My view is that Consultants should welcome other opinions and recommendations especially if their own experience is limited.
We are the folks with one chance to get all this right, so please don’t worry about seeking advice from elsewhere.
I have never joined any forums before but reading your post I jumped on the computer as I felt I should meet some similar folks and share some experience.
I hope we can support each other
Take Care

10

Hiya and welcome
I am a fairly recent addition to the forum myself, with a lot to learn, probably! So most of what I write is my experience and opinion - if I think something is fact, I’ll say where I found it so you can work out for yourself if it’s something you want to consider.

I’ve done 3xFEC and 3xTax. Originally, I was due to have 6 FEC, but the half way ultrasound found 3 lumps they didn’t know about (4 originally) and they couldn’t be sure if they were new or just they hadn’t seen them first time.

I have to say that I felt like the FEC was working better, but I don’t know whether that’s because the initially hugeness of my already ample 32DD was quickly reduced. It was way bigger than normal and often giving me BOF (boob over flow!) from my bras. Within 2 days of the first treatment of FEC, it was considerably different.

The Tax seems to have reduced the lumps underneath, but it’s still not right and not as near being back to normal as the original FECs.

I only had 1 ultrasound half way through (the outcome of which meant they changed the drugs). I was going to have one on finishing chemo, but the appt they sent was when I was in Spain (just got back) and the consultant says it’s a bit irrelevant as the treatment now (mx followed by radio) will be the same regardless.

I am under Poole hospital and am only just starting to research stuff now, so not sure how many others they have dealt with etc. It has felt a little topsy turvy as I have seem a different person almost every time as the main Onc retired just after my first appt and had locums since.

To start with, I relied on other people I know (in real life) who’ve had BC and take advice and opinions from them. But now I realise it’s better to focus on people with IBC as it does seem treatment and outcomes are very different. And it feels good to go to appointments loaded with questions and opinions for the professionals to either answer/confirm/deny. This IS a different cancer and I do feel as it if relatively uncommon, it’s worth me mentioning to everyone possible at the hospital to nudge them that it’s not the norm! No real reason for this.

I do completely believe that a positive mental attitude is half the battle. No always easy, I allow myself to wallow for a day here and there but no more!

Off to see the surgeon tomorrow and hopefully have a date for mx in next few weeks.

Oh, and by the way, the chemo nurse, mac nurse, surgeon, onc all have a pow wow every Tuesday to discuss cases, so I know that communication between depts at Poole not an issie…

11

Hi everyone…:smiley:

Hello cab and welcome…:smiley:

I’m not sure if part of the differnce in our chemo regiemes is whether we were er+, her+, er and her+ or triple negative…

also they seem to be slightly changing the regiemes every year as more medical trials and research papers come in…

i think it is really good now we have this ibc section of the site as ibc is so different and i think ibc posts used to get lost before really…

i am a great believer in being postive as well… i must admit and i think carole will agree (we were diagnosed within a short time together so have been at the same stage all the way along) it does get hard once active treatment finishes as it seems any ache or pain results in a scan - plus the treatment we have is very harsh and leaves lots of side effects… but as i always say it is better than the alternative…

take care everyone

theresa x

12

Do let us know what happened with your appointment at the Harbour Hospital yesterday?! Though if you follow Pash’s lead, it would seem that the actual mastectomy can be done anywhere equipped to do so!

13

Having just read your message to Pash, thought I’d revert to your earlier thread to offer words of encouragement for the fear you expressed over scheduled mastectomy on 27th…?

I know everyone is different but several of us have been blessed with very little pain/discomfort from the op. So perhaps try not to to focus on the fear that says it’ll be different for you - it might just be better! And what a lovely place to have the op.!

Even if you DO experience any pain, be assured that you do not need to; the painkillers DO work so (as I was told!) don’t try to be brave or think it’s a weakness to accept them…

If being so far from home/visitors is adding to the fear, I don’t for one minute suggest I’m a solution but am more than happy to come & find you whilst you’re in and add moral support in the possible absence of those who would normally be there for you?! As you know - it’s just across the road to the main hospital. Up to you - PM me if you like?

14

Hi Dee Dee,

Just agreeing with Haxted about the mastectomy. I was very nervous before mine too since I’d had a bad reaction to anaesthesia before but it went very smoothly. I was up and about the morning after the op. It was uncomfortable for a few days with the drains in but I accepted the regular paracetamol while in hospital and had very little pain. I took a sleeping tablet at night but that was mainly due to the noise from other patients keeping me awake. The woman in the next bed had same op and took no pain relief at all afterwards. I also found the nursing staff very sensitive and caring especially when I wobbled at the thought of seeing my scar while having a bath. (It wasn’t as bad as I thought)

Hopefully yours will go as well. Obviously being a Scottish lady I’m too far away to visit but happy to answer any questions you feel you don’t want to ask your BCN before or after the op.

best wishes Jan xxx