Hi @fp_flint thank you so much for your message. Its so good to hear from someone else who has been through the IBC rollercoaster. I am generally feeling positive about the treatment, although i have only had 1 cycle of EC and i think I was a little too optimistic about the side effects. I have been trying to just focus on my cycle and deal with each challenge as it co.es, but I hope you don’t mind me asking, did you have to have any further chemo post surgery? I am considering asking my surgeon if they will consider a double mastectomy, I am very big busted and obviously along with concerns of a reoccurrence, i would not like to have reconstruction if offered a later date. I guess our club is even more exclusive than the already dreaded Breast Cancer club.
Thank you again so much for messaging xx
Hello @radargb & @fp_flint - hope you are both doing ok as can be. Yup. Ibc does feel somewhat “exclusive” for want of a better word.
Have somehow almost got to the end of radiotherapy… were you both diagnosed quickly? Or did you go down the antibiotics route 1st?
Hi @sbee ah you must be so pleased, that’s a milestone.
I actually had a suspicious mole on my breast and the teledeerm lady who noticed something didn’t look right. I went straight back to my GP and by the time i visited the Breast clinic 2 weeks later for a mammogram and ultrasound, my breast had swollen significantly. That was August 18th and I started EC chemo on 24th October. So i am am still at the overwhelmed stage i think.
It obviously isn’t a club id want to wish on anyone, but im so pleased to hear from other’s with IBC, so im so grateful for you messaging xx
I understand, i have and do struggle a lot & not many people know much about it. Even some medical staff! I was given 3 rounds of antibiotics prior to diagnosis & knew in my bones that something was wrong.
X
@sbee I kept telling my family to prepare themselves as I knew there was something not right when the telederm lady insisted I went straight to my GP. I also could feel a lump, although they have confirmed now that 50% of the breast is cancer.
I have tried to avoid looking anything up but I was surprised how little anyone appeared to know.
Any advice or experiences that you have to share would be so greatly appreciated.
The forums are wonderful and all the advice and suggestions really are helping, but to have other people in the same situation seems strangely like a relief.
I think knowing how you are both post chemo and surgery is shows you aren’t alone xx
Of course - i know the feeling well. I trawlled the internet trying to find anyone that had been there & was willing to chat about it. There are a couple of other lovely women here too for support.
I knew something was wrong in jan, and in feb it was sadly confirmed - i had 8 rounds of chemo (x4 ec & 4 docetaxol) then surgery & will finish my 15th radiotherapy tomorrow. X
I didn’t bother going through GP as they have been useless for much smaller things.
I knew something was wrong, lady year April had Mammogram…got all clear, then late May into early June stated with pain… thought it was aerobics.
Then was in Germany lecturing about 80 team members and felt tired and worst still my brand new Bravissimo bras would no longer fit…I always travel with sport bras to get through customs easier…had to use these for 2 out of 5 days…
Still took 3 weeks for me to brave checking Google for symptoms and all were screaming IBC…so I got hold of BUPA and explained my symptoms…
Called on the 4 th July and was seen on the 8th July confirmed Cancer and they were concerned…on 18th confirmed IBC…
As surgeon said in less than 8 weeks I had significant issues.
I now tell people… don’t accept GP’s fob off …I have heard it all…I am menopausal so all these issues are normal…I am overthinking etc etc…
I am also member of the IBC UK Facebook Group - They’re so so amazing.
You need to be vetted in but we all have the same rate cancer…
Hugs
H @radargb
The Surgeon won’t do the double mastectomy as the whole aim is to expedite your recovery and treatment plan.
But with IBC you have 2 years to request a DIEP reconstruction or have the other side removed for symmetry.
Also join the UK IBC Network Facebook group.
There’s so much positivity and encouragement from fellow warriors…
@fp_flint @tessie86 @sbee
Thank so much for sharing your stories, it really is nice to have this lovely support and such positivity.
I had to call the oncology support number thing yesterday to see what i could use for a sore mouth. Fortunately no ulcers but was really struggling with it (flared up in the night when everything seems worse).
Feeling better now armed with Difflam spray and Dissolvable co codermol to garage with).
I was feeling a little fed up but im feeling better now. I think its the unknown that i find hard, i like to plan lol.
I am up at Guys on Thursday for my PICC line, which im a little nervous about.
@tessie86 how did you get on with your injections, i know you were nervous .
How are you all lovelies all doing today? Xx
Thank you so much for that, it is just that not knowing what to expect and im really trying not to google abd go down a rabbit hole.xx
@radargb It is so nice to have the support from everyone here, just makes you not feel so alone I guess, but also really sad as happening to so many people!
The injections have been a challenge, it took 7 attempts yesterday with me over heating and sitting on the bathroom floor trying to calm myself down, I was trying the belly, and suddenly something clicked and I went straight for the thigh and it went in so easily. So that is the plan tonight! I think you almost have to detach from the fact that it is your body, I guess this whole experience is almost detaching yourself from the reality that we are living through.
Defo feeling a little more shaky today so trying to make sure I eat and drink plenty as I think that was my downfall yesterday as it was the first day on my own since chemo, so need to get strict with myself!
I hope that you are doing okay today! xx
@tessie86 oh you poor thing, you can always message me if you are struggling with the injections or anything as i am barely sleeping and im 1 week ahead of you.
Im Lianne, im in South London and i think you’re a fair bot younger than me. Im 52 in December but when i don’t have IBC i think Im 21 xxx
That is so kind of you thank you 
I think if I can do it first time tonight then I have cracked it lol fingers tightly crossed!
I am 39 and based in Surrey, I am going to have the biggest 40th next year!!!
It does get easier each time, I honestly had no idea what comes with chemotherapy.
I said to my husband and son that we have to do something special next year to celebrate.
I think a 40th deserves a week of celebrations, but under these circumstances it clearly should be a month lol.
I hit day 14 on Thursday, which my nurse said hair loss starts, i am trying to see these all as milestones. Looking at Christmas turbans has really cheered me up xx
@radargb are you cold capping?
Intrigued by christmas turbans, please post some images if you can
@tessie86 no I wasn’t brave enough to try cold capping, I hate the cold and I was told it adds 90 mins onto each infusion.
I had my hair clipped to a number 2 just before my first cycle on the 24th.
I was feeling all positive and kept saying that it doesn’t matter about my hair, I still think that but I wont lie, Im not looking forward to the first lot of shedding
U will send pics of the Christmas turbans, just got to work out how lol xx
