I saw my onc today and she says i now have inflammatory breast cancer.
I have had 2 Ac chemos which failed to shrink my tumour, it doubled its size to 10cm. I had my 2nd Taxotere today and my onc feels this chemo isnt working either. I now have to have another biopsy to see if my recepters are HER2+, if so i will be put onto Herceptin,if not my only option is to have radiotherapy which carries more probs and risks having it before surgery. I feel like my treatment options are now limited and i cant see a light at the end of the tunnel, im so scared that nothing is going to work on my tumour.
Has anybody been through any similar treatment failures?
I would be grateful for any feed back just to know there is hope out there for me.
Just wanted to say how very sorry I am to hear that you’re having such a scary time. AC didn’t work for me before surgery either but my 4 cm tumour only grew a bit (I had 6 AC and after 3 tumour was smaller but then it grew again.) I had taxotere after surgery and I was in remission for 2 and ahlf years after that.
Don’t have IBC though so your situation is different in several ways.
Wish I had something more reassuring to say…I do know how scary it is when tretaments don’t work (I’m in a similar place now with a regional recurrence)
Hope you get your her2 results soon so tha a decision can be made about herceptin.
very best wihes…this is a hard time for you. Hope you get some more replies.
It sounds like you’re going through a pretty worrying time at the moment. I’m sure you’ll get loads of support here from people who have had a similar experience but If you are feeling upset and worried and want to talk to someone who understands what you are going through then do give our helpline a call. Everyone working on our helpline either has experience of breast cancer, or is a breast care nurse, and has an excellent knowledge of breast cancer issues. They are on 0808 800 6000 and are open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm.
I know you are really scared and I just wanted to let you know that I am thinking of you. I hope that your doctor can suggest another form of chemotherapy which will work on your tumour. I believe there are quite a few around - have you thought of getting a second opinion to see whether another oncologist can recommend some other sort of chemotherapy/regimen of treatment? I think that it’s really important that if you can do this, that you do especially as you’ve just been told your cancer is something different to what you’d originally been told (that’s what it sounds like from what you’ve said above). I don’t know where you live but there are specialist cancer hospitals which offer a much wider range of chemotherapies than some of the others.
Hi,
I agree, ask for a second opinion from one of the big top units like the Royal Marsden and others around the country. It will be reassuring but also may lead to you being offered something in a trial. As inflammatory Bc is more rare it is much more important that you are under the care of a big unit who have experience. Why not ask who specialises in it and ask to see them. There are 2 specialist sites but I have not looked at them so not sure what might be on there. www.ibcsupport.org and www.ibcresearch.org. It varies a lot according to the US BC doc Susan Love so try not to think everything is definitely coming your way.
Lots of love and hugs, put all that energy into action to see someone who knows what they are talking about and don’t take no for a an answer. Not sure if you can manage a private one off consultation to jump the queue? You could also put a thread out for help, I talk to another lady who was later told she has IBC and was moved to another hospital for treatment but not in the UK.
Lily x
I have asked for a second opinion im just waiting for a letter/appointment. It wont be the marsden though its a hospital in kings Lynn close to where i live,could i cancel that appointment when it comes through and see my GP again to ask for a second opinion at the marsden. is that allowed?
Shell, you can have an opinion at any hospital within the UK. You are 100% in your rights to insist on the Marsden, call your GP on Monday and get them to make the referral. I think I put details about it on a mail on Facebook for you.
Hi Shell,
I would just ask to see a specialist in inflammatory BC and get your Gp to check out where they are based or start a thread on here after all we know as much as them most of the time. The other lady I chat to wtih IBC has just had her op so off line for a bit but might have useful info for you.
Aim for the very best care you can get while you are having a second opinion or you may still not feel happy after it. Better to hang on for a really good onc.
Hugs
Lily x
Hi
My onc has told me that because my idc has turned into ibc wont change my treatment regime.My treatment will still be the same. I will get a second opinion though as im sure there must be more options out there for me…
As you know, I saw Prof Smith at the Marsden, and he is as good as they get for IBC, as nobody in the UK specialises in it. You can ask your GP for a specific referal to him, and he saw me within a week.
Your treatment may not seem to be working, but it might be different when they examine things after your surgery. My FEC didn’t work, 1st Tax didn’t work, but when they added in the herceptin it stopped growing.
My onc thought my treatment wasn’t working as the mass was still hard, hot and not any smaller, but when I had my mastectomy it was a different story, and the IBC had gone & just DCIS remained.
Try to stay positive if you can, it’s a sh1tty disease, but you can beat it, and we’re all here for you.
I’m sure we could arrange to meet up next weekend, leave it with me & we’ll see what we can sort out,
Hi Shell,
just want to let you know we are all rooting for you. Lots of luck getting to see one of the top oncologists. I have heard Mr Smith spoken of in glowing terms before, so sounds a good one. I am not knowledgeable on this but will be following your progress and will add if I find out anything useful.
Hugs
Lily x
I have had my second opinion with Prof Smith at the Marsden and he suggeste another chemo to try.Its two types of chemo but given as one, so i understand…Its - Vinorelbine & Carboplatin…
I am not HER2 positive so i can not have Herceptin. My tumour will not respond to it.
As i am HER2 negative my cancer will / should only respond to chemo.
As the last two chemos have made no change to my tumour maybe the third will…3rd time lucky hey???
Prof said if the third chemo doesnt work then surgery will be my next option but because of its size & i now have 3 nodes under the arm pit, they would most certainly leave cancer behind, if they cant control the cancer now they wont be able to control it after the op…So its just alot of trying and praying at the mo and hope one of the chemos start to kick in before it grows out of hand…
I have had both carboplatin and vinorilbine though not together. Had 6 cycles of vinorilbine with another drug called xeloda and my regional tumours did shrink on it. I am returning to vinorilbine next week.
I had carboplatin with a drug called gemcitibine and my tumours stayed stable over 6 cycles but then grew as soon as I came off it.
Side effects: not so bad as AC or taxotere. For me fatigue is always the worse side effect of chemo. I didn’t lose my hair on vinorilbone but did on carboplatin though you are not supposed to!
Vinorilbine works on tumours in a similar way to taxotere but carbolplatin works quite differently…in some people with triple negative bc carboplatin has been very successful.
Another update… I had my carboplatin & Vinorelbine on Friday and i am just feeling a little tired with an achey boob, that’s due to the IBC though. I go back next Friday for another chemo session and then start all over again boxing day…
I have now learned that these 2 drugs are widely used together for lung, liver & cervical cancers…
I had to wait for a “go ahead” licence for these drugs to be used on my BC in my hospital. What an agonising wait that was…
Any way i have had them now so lets hope and pray they start to shrink my tumour.