Diagnosed with probable inflammatory breast cancer today

Hello Naturalborn Knitter

Welcome to the Online Community.

I am sorry to hear that you have had a diagnosis of probable IBC.

Thank you for sharing your diagnosis story and I am sure that it will give others some helpful information and an idea of what to expect. 

I wish you well with your treatment and hope that it can get underway soon.

In the meantime, if talking things through would help, then please do give the Support Line a call.

Jane

Thank you for sharing. I am 54 and am due in clinic in 11 days. It looks like they will give me the same diagnosis. I am terrified. 

I hope your treatment goes smoothly and your cancer responds favourably. 

Angela

I completely understand where you’re coming from. The waiting for results is really hard. So far my results haven’t been as promising as I’d hoped but…I can either sit and mope and worry, (which of course I do sometimes and is a more than valid response to this horrible diagnosis), or I can enjoy my life to the fullest while I can and hope it will be for years to come…if it isn’t…then at least I’ve enjoyed it. X I hope your news is better than you fear. 

Hi, 

Sorry to hear about your diagnosis.

My symptoms were different in that I had discomfort in my rib area for some time then tingling and weird sensations in my arm pit, no one thought it was my breast and no one sent me for a CT scan, then some time later my right nipple slightly inverted, and a week later I could feel a three quarter mass under my breast skin.  I had some pitting on the skin of my breast which is the en peu de orange (pitting similar to on an orange) that they say is consistent with inflammatory breast cancer.  I then went back to the GP immediately who referred me to the hospital and the biospies confirmed it was inflammatory cancer.  I demanded a CT scan which they weren't initially going to give me until after the biopsy result came back, because I wanted to know asap if it was cancer had it spread or if it wasn't was there another issues somewhere else, as I insisted they actioned it and found out the cancer had not spread.

I was meant to have 6 rounds of chemo, chemo rounds 1 and 2 were ok but on round 2 I started to feel tingly in my face and I had a reaction so they had to give me anti histamines very quickly.  With chemo round 3 my hair started to fully fall out (I didn't want a cold cap because I was told it can give you migraines, it takes about an hour or more, and it is not guaranteed to be successful) plus I thought my hair will grow back hopefully.  With chemo round 3 after I felt like I was having a heart attack, everything felt like a struggle and I found it hard to stand, I felt breathless and I started to feel a bit cold and shivery and get emotional, I left it a few days and thought I was ok but called the health team just to make sure as I thought it was just a normal reaction, they advised me to go to A and E, and it turned out I had nutrapina/suspected sepsis and had a stay in hospital and was on a drip, they were really concerned about my heart rate and I was dehydrated.  With chemo round 4 I had really bad gastro symptoms and had sickness and diarrhea for a month, the loperamide wasn't really working, and I ended up being in A and E and on a drip again and having 3 rounds of antibiotics.  I then really focused on my diet in terms of drinking electrolyte drinks and broth, and eating bland foods such as rice, potatoes, apple source, and vegtables, as well as yoghurt, and taking oregano and peppermint supplements.  It then resolved and my oncologist said as it was diminishing returns not to bother with the other 2 rounds of chemo.

I was told masectomy is now the gold standard and was informed I needed non skin sparing masectomy then would have to wait a year for reconstruction.  I am not keen on masectomy so battled to get an ultra sound and biopsies to see what state my cancer and tumour is at, I am waiting to see if there are active cells in the area where my cancer tumour is or if they are dead, the tumour has shrunk from 36mm in April post chemo to 13mm as of last week, since I have been on Phesgo.  Since requesting a referral I am with the Royal Marsden who have offered me masectomy and immediate reconstruction with a diep flap or an implant, or that they just remove the tumour area with then reconstruction, so I have gone from one option from one trust to four options in terms of reconstruction from another.

I have had to battle having no or little support, people giving me misinformation or not giving me as many options as other trusts, and looking into research myself that the healthcare providers do not seem to be aware of e.g. the research on aspirin, the cellular scanners that are being developed, the possibility of HIFU or histrophy, the current research that looks into whether phesgo and lampatanib can lead to people not needing a masectomy.   I have had to battle getting better treatment and care, and a system that says if your BMI is too high forget talking about and considering reconstruction options.  Funnily since I complained I no longer need to wait for my phesgo injections, they happen on time.

In terms of the point I am making is that different people's journeys can be different.  For me I do not want a masectomy and understand the risks so the option I was given after making this clear was to be on phesgo and then given a referral to a trust that could offer me more reconstructon options.  Therefore, at the moment the information out there as to what is available is the standard NHS options but if you challenge and question, dependent on what you want, there may be other options available to you that other health care professionals weren't aware of.

Hi Samroz ,

I am sorry to hear of your diagnosis and the troubles you’ve been having. It is hard enough without having to battle for the appropriate treatment!

I agree that everyone’s experience is different, I’m on a few different groups and there are many stories of treatment, diagnosis etc  

I have to admit that I have been blindly going along with what my Oncologist has said but perhaps I need to question them a bit more. 

My diagnosis is indeed Triple Negative Inflammatory Breast Cancer with mets to spine (at first they thought it had spread to lung too so I feel lucky it is ‘just’ spine). I’m halfway through a 6 month course of chemo (Paclitaxel) and as I had a serious reaction on the 2nd one, they now push it through slower and, fingers crossed, no further issues - apart from losing my hair. 

I will be asking my Oncologist about mastectomy but, as I’m stage 4 perhaps that isn’t an option. I wish you well on your journey and hope you are able to achieve the holy grail of NED