Diagnosed 5 weeks ago with IBC triple negative

Hi Birds

Welcome to the forum and I am sorry to hear that you have been diagnosed with triple negative IBC and that you are having trouble sleeping because of breast pain.  Have you talked to your breast care nurse about the pain you are feeling?  They may be able to suggest something for you to take for the pain.

Hopefully you'll feel better soon.

Wishing you the best of luck with whatever treatment you'll be having.

Best wishes

Daisy53

Have you found the IBC support group? I am recovering from IBC but their help and support has been invaluable https://www.ibcnetworkuk.org/ 

Have you found the IBC support group? I am recovering from IBC but their help and support has been invaluable https://www.ibcnetworkuk.org/ 

Hello. Me too - it's absolutely awful. Have you started treatment? Xx

I did thank you x

Hi SophieBee yes I am nearly finished with my chemo now just got one more to go and then i have my op booked in for 13th June. 

Alot has happened since my first post, and I won't lie it has at times been a struggle but I held in there and kept thinking tomorrow will be different. I ended up having more biopsies in my breasts and arm pits 9 in total and I'm sure you know they aren't the nicest. Mine ended up spreading to my left breast so I have had to get my head around the fact I am having a double mastectomy and lymph nodes removed in both armpits. My consultant has been amazing explaining everything and so have macmillan with councilling. I can't say the same for my oncologist he lacks empathy but guess he is all about the science and that's why you have the nurses. I have found that trying to be positive and taking everyday one at a time has really helped.

When were you diagnosed?

Have you started treatment?

How are you feeling?

Do you have a good support network i.e family or friends?

Xx

I can completely relate to the oncologist comment - and have / am experiencing the same which I've found really tough.

Have you done x4 ec & docetaxel? I've just done the first docetaxel and found it horrendous tbh. I just don't know if I can keep going with it.

I was diagnosed in Feb. Kept going back. I'm so sorry to hear that it spread. I'm struggling with a network tbh, I'm 38 and live solo. Most of my friends have young families and are preoccupied with that. X

Speak to your oncology nurse or your breast care nurse they should provide you with some understanding. If not you can message me anytime x.

I've done 4 months of Pembrlizumab  and Taxol Carboplatin once a week and 4  Epirubicin Cyclophosphamide and Pembrlizumab every 3 weeks just got one more to go. I have heard that dosetaxel can be hard. Have you spoke to the chemo nurses and told them how hard it is or ring your oncologist PA and tell her to to tell him or her how hard your finding it and is there another one you could try. I found the pembrlizumab hard and they lowered my dose which helped.

I live solo too and know how hard it is but have found these networks really helpful I've also joined a private Facebook group which is really helpful and supportive I've message in the middle of the night when I've felt down and there is always someone in the same boat...... Can't sleep lol to message. The groups called Ladies Fighting Breast Cancer / Breastmate Central.

Try to keep positive you can beat this! I know how awful it is because of the diagnosis and not many people get it but my consultant is quite confident he can get all the cancer in the operation. It is hard especially when you have appointments and tests to keep going to and then the constant waiting for results but I promise it will get easier and slow down. I will not allow my shitty titties lol to win.

I'm here if you need to talk like I say. 

Where in the country are you?

Xx

Thanks so much for getting back to me. Do you mind me asking your age? How have you handled the chemotherapy? This last one has been brutal (ended up in hospital) & will speak to them in my next appointment.

I'm dreading the surgery too but apparently there are no alternatives. (i still can't bear the thought of losing my breast / breasts)

I'm in London, but have had to stay with family in Devon since my recent treatment as simply was just not able to care for myself after the treatment. 

Are you still working? My breast also was causing a lot of pain. It felt like an electrical current pulsing through. 

Sophie x

I'm 47, I first thought something was wrong when I got out the shower on a Sunday and was moisturising and thought I found a tiny lump right next to my nipple. I also had pain but thought it was stress. I ignored it thinking it was my age and possibly being menopausal or the time of the month. When I got up the following Friday and took my Pj's off my breast was bright red and I knew something was wrong. I drop my doggies off at my mom's when I'm at work so I showed her and rang the doctors straight away. They saw me the same day but diagnosed me as having mastitis even though I have no children and never breast fed. They gave me antibiotics for a week hence they didn't work and the pain got even worse then they gave me another antibiotic this time for 3 days again they didn't work but this time when I went back after the 3 days they sent me straight to the hospital and then it just escalated over the following two weeks with biopsies, mammograms, ct scans, blood tests. I know how you must have felt when they said you've got to have chemo and your breast has got to come off regardless it was a blur when they told me just glad my mom and sister were with me.

I've lost my hair, my nails are lifting and coming off, sickness, mustle aches, headaches, constipation, tiredness, swollen arms, hands and feet, tastbuds disappeared BUT not everytime or day it's true everybody reacts differently and that's what I meant about taking it one day at a time if I had a few side effects one day they would be different the next or I would feel OK and then I could have a couple of days where I could not get out of bed.

I know the feeling about the op the closer mine comes the worse I get which is why I'm in touch with macmillan on the phone and they have arranged for councilling. The way I see it we have no choice if it's going to help us we have to have it done but I haven't gone through it yet so I will probably breakdown and cry before I go in. I've never been in hospital for anything or had an op before so am really scared. I'm doing everything I can to be positive, eat the right foods exercise when I can before the op. 

I live in Wolverhampton it was just incase you were close we could have met up. It's good that your at your families and they are taking care of you I stop at my mom's most weeks and only venture back a couple days a month but she's only 3 miles away from me. 

No as soon as I was diagnosed I went off sick I'm dreading going back as I work in construction with alot of men. I dread them saying something about my breasts. At this moment in time I don't want to go back but think I'll be off for a good few months yet so will cross that bridge when I come to it.

I couldn't go into work as like you say the pain was unbearable it was like I had turrets I kept jolting with the pain it was like an electric shock in the nipple. The hospital gave me Co-codamol 500mg and liquid morphine and it did help but once I started having chemo after about 4 weeks the pain stopped. 

I've been hospitalised a few times for a chest infection which went to bronchitis. A water infection which went onto e-coli and an infection in my breast as it went sore and red again. All these times they stopped my chemo which stressed me out as I thought the cancer would grow back but they assured me it wouldn't and when I went for my last oncology apoointment he said the cancer had shrunk but they would still be removing both breasts. 

I do feel for you as I was so unsure of what was normal, a side effect or something I should hlbe worried about at first but now I just call the emergency number they give me for anything lol and they put my mind at rest. 

How far are you with your chemo?

Have they said when your op is?