Has anyone else been diagnosed with inflammatory breast cancer (triple negative) with absolutely no changes to the skin or nipple?
I seem to be a bit of an anomaly, my surgeon even brought another surgeon into my second appointment (where I was given the diagnosis) just to see ‘it’ and her first words were ‘but there’s no skin changes’.
I didn’t know anything about IBC at that point, so didn’t ask any questions. I saw the oncologist last week and was told that it was Stage 2, but then got lambasted by the admin on another forum for saying that 'because I have to be at least a Stage 3b to be diagnosed with IBC.
From what I’ve read, it seems that skin changes always occur and that’s what makes it a Stage 3 from the outset, but as I said, I don’t have any.
I’m very confused. I have a clinic appointment on Friday, but this is playing on my mind now.
Hello @farmerjo - just wanted to reply to you as i also have been diagnosed with ibc.
I did have skin changes, but was missing a lot of the other symptoms. Where are you with your treatment plan? May I ask your age? Xx
I’m starting chemotherapy in approximately 2 weeks time (wk beginning 23rd June). I’ve had the initial breast biopsies, where they took 7 samples as there wasn’t ‘one significant area’ to biopsy and then had another biopsy under my arm to see if it had spread. I haven’t had the result of that one yet nor the CT scan. I was told that I’d need to have an echocardiogram done at another health board, but the appointment’s come from them and it’s for a kidney scan in nuclear medicine!
I’m 57, so I’ve also been given genetic testing, as there’s absolutely no cancer in either side of my family (parents, aunts, uncles, grandparents). I have 1 cousin that’s had a cancer, but his mother’s family have a high number of cases in their family.
How far are you into this journey?
I understand. I was diagnosed in Feb but knew in my heart something wasn’t right in Jan.
I’ve had the genetic testing too (had a grandma with bc) but she was 68 so apparently they don’t make a link. Genetics negative.
I’m 38 - and devastated. “Path” seems to be x4ec and x4 docetaxel which I have really struggled with. But
It seems such a rare diagnosis.
May i ask what symptoms you had to go to the doctor? Are you based in the UK?
You’re much younger than me.
I’d been away for the weekend at the end of April. When I went to bed on the Sunday evening, as I turned to lie down on my right side, I felt a pain in the side of my breast and then felt a hard, long lump. It wasn’t there in the morning.
I’d been paintballing on the Saturday, so thought it was something to do with that, until the Thursday and it was getting more painful, so I saw the GP that day and he referred me to the breast clinic immediately. I was seen there 12 days later and had a mammogram (where nothing showed up due to dense breast tissue), ultrasound and 7 samples taken for biopsies.
I guessed straight away that they thought/knew it was cancer, but had to wait 10 days for the biopsy results.
I’ve had no other symptoms, besides my breast aching now, but I don’t know whether that’s the cancer or still pain following the biopsies (I had another at the 2nd appointment). I still don’t have any changes to the skin (even the bruising from the biopsies have faded).
How about you, what were your symptoms?
I understand - mine aches a lot too. I noticed a thickening at the bottom of my breast but it was just before my period started and not much different to that. Once the period came it didn’t go down & knew something was wrong straight away. Xx
Hello, how are you?
Hi @farmerjo - just wondering how you’re getting on?
I’m ok thank you. I have my son’s wedding tomorrow, so plenty to keep me occupied in between hospital appointments! My CT scan was clear and my lymph biopsy results showed minimal spread. I start my chemo journey on Tuesday and am going into it with a positive mindset. I’m quite a practical, stoic, and straightforward person (being a farmer, I have to be), so I’ll deal with each issue once it becomes a problem. I’ve only had one slight wobble so far, before I had the scan results, but it only lasted a few minutes. I’m sure I’ll have plenty more over the coming months, though! Until speaking to others and reading this and other forums, I hadn’t realised that there were so many different types of breast cancer and variations within those types. Nobody I’ve spoken to has had the same diagnosis or treatment.
Hey ya @farmerjo - how are you doing? How is everyone here? I’m feeling rather isolated in the IBC space. X
There’s not many of us out there! I haven’t spoken to anyone else who’s had/got it. Apparently, were less than 5% of all BC diganosis. I had my second chemo yesterday. I coped well with the 1st and worked all day last Wednesday. I didn’t feel that the cold cap was very cold at all, the worse bit was the strap. But then, as I’ve come off HRT, on Thursday, I felt like my insides were being ripped out and I started the Finasteride injections on Thursday evening and I was in agony. Sick all Friday morning and my legs, hips and everywhere that I have osteoarthritis was so painful. Then, almost 24 hours since I had the first injection, it was like someone turned the pain switch off and I was fine after the other 2. I carried on as normal all weekend (though I was really glad that my daughter was working on Saturday morning, so my husband had scrapped the idea of taking some of the cows to a local show on Saturday!).
This week, I didn’t need one part of the infusions as my blood count was high enough not to need it, so I was only there for 4.5 hours. I was REALLY tired going yesterday morning (calves in the paddock behind the house had been mooing since 4 am!) and struggled with the weight of the cold cap (it was even less cold this week). No meds to come home with this week, so just the anti-sickness before my next treatment and only other appointment is for bloods next Monday. I feel a bit of a fraud, as I’m completely fine, but I assume this isn’t going to last, so making the most of it!
How about you?
Thank you for your reply @farmerjo! I have found 2 other people here with it. I think under the group ibc.
I understand, emotionally I didn’t breeze chemotherapy but physically my body really stood up to it and all my bloods etc were good which I found all rather hard to comprehend - I’ve never felt unwell in all of this minus the se’s.
Do you have 4ec & 4docetaxel? I have completed chemotherapy now.
Xx
I have it the other way around 4 X docxacel weekly, followed by 4 X EC 3 weekly.
So interesting!
How are you doing?