To have the op or try alternative

morning Fran   

I still suffer from chemo brain and just have to make endless lists and notes, the notes app on the iPhone is quite useful for that and I carry a notebook everywhere.

I spoke to quite a few people when I was trying to make up my mind about chemotherapy.

But in the end it was the oncologist, Dr Marina Parton at the Marsden, who others have praised, who actually convinced me. 

You do need a doctor you can have complete faith and trust in.

For this you will need to be a little bit assertive and I actually struggle with this, oh yes I do !  Not so much if I'm advocating for other people, mostly when I'm standing up for myself. 

How do you get on with your GP?   You can see if the choose and book system might be applicable in your case, I think it should be. 

You can opt to attend the Marsden if you're London based, or reasonable travelling distance or the Christie in Manchester, but there other local centres of excellence, which we could put a call out for, which area are you ?

Our local hospital has a very good oncologist who people travel to see, can't think of his name but I can Google it, that chemo brain again. 

I'm with you, the chemo you're being offered is belt and braces and there is no evidence that it will or has worked for you. 

End of the day they are right, it is about being able to live with your decision if you refuse.

But I think if you find the right oncologist you may find a better solution for you, Marina is pro personalisation and there actually quite a few chemo drugs to choose from. 

big hugs

Carolyn

xxx

Hello Carolyn,

I thought I'd replied to you but obviously not.

I am going to see the Oncologist , who I do have faith in, on the 9th October. He asked to see me before but typically I'm going to a music concert and Its been booked for 7 months I'm not giving that up.

Anyway the upshot is that my body has decided that the Foob I have on my left side is not healing, its now leaking in a different place, so really I decided that with Chemo it will definitely not heal at the moment I can see a light at the end of the tunnel.

The drs want to help and make sure that they offer the full gold star treatment but for some people it doesn't work. Everyone's body is different and everyone want to try different things. So really that's my theory and I'll ask for the next plan after no chemo and see what they say.

How are you doing Chloecat?

Thanks Fran

Hi  

I am going to tag for you because I don't know if she is still following this thread. Tagging her will mean she is sent an email. You can always do this yourself if you want to get hold of someone - either start typing @ followed by their name and you should get a list appear and you click on their name, or if that doesn't work (doesn't work on my phone) then if you hover over their user name at the top of a post, click "select" then copy and paste into your reply that should have the same effect. 

Also - you can always left click on someone's username and that will bring up their profile where you can send a friend request which, once accepted, means you can private message them.

Hope that helps

R

I know your saying this is a bunnie and its soso cute I do love animals, however Im seeing a little dog ??????? Dont novwhy I just cannt see a bunnie. Keep smiling lovly ladies. Xx

Thanks for the advice, I'm new to these forums.

Hi  

No worries, you will soon get used to it...

Just that some of the discussions here get so many replies it pays to just mention who you are replying to :)

Take care, G n' J

Hello Ghost44

I'm really sorry to read your story, you have been really unlucky and I can only imagine how you must be feeling.

I had triple negative bc in 2013. Very similar to you, after the lumpectomy they found 2 tumours grade 2 & 3. I had chemo to shrink the tumour before surgery. Then radiotherapy, when I got my brca2 result. Then ovaries and double mastectomy/recon. The chemo was the worst thing. I was terrified they would find cancer after mastectomy, but luckily my pathology came back clear.

I phoned Breast Cancer Care helpline (0808 800 6000) numerous times for advice about cancer treatments and I recommend you do the same. None of us on these forums are qualified to give personal cancer medical help and advice, each person's situation is different. When you speak with Breast Cancer Care you will get straight onto a specialist, who will help you think about your options in a helpful and informed way. You didnt say what type of IDC you have. Was the first one ER+ve? This one may be another type. 

See https://www.breastcancercare.org.uk/

I was unhappy with the breast surgeon at my local hospital (great surgeon, poor manner). After the cancer treatment I got in touch with National Hereditary Breast Cancer Helpline (01629 813 000), who put me in touch with other brca ladies nearby. As a result, my GP supported me to transfer to a different hospital and I feel much more reassured that they will monitor me appropriately.

NHBCH also have a network of shops where you may also find someone talk to.

See http://www.breastcancergenetics.co.uk/

There is also a BRCA UK Facebook group which you may find helpful.

I do help this is helpful and I send you gentle virtual hugs and best wishes xxx

Hi All

Sorry for the delay in getting back to you but much has been going on.

Tried to get repeat prescription from GP of Arimidex and was told categorically that they would not sanction it. Now I ask myself WHY some women in the UK are prescribed this and not others? I have questioned this with the CCG as GP had already sought guidance from them who advised not to prescribe. CCG are investigating with GP and hospital. As a result of this stress I checked with Oncology at the hospital for the appointment I had yet to receive and have had that on 4 October. I agreed to be put on Exemestane and Everolimus (the everolimus makes the exemestane work better – they say). Everolimus does have some bad side effects which I am hoping to escape!!!! Like lesions on the lungs!!!!! I was also prescribed Lemon Mucilage which is a liquid anti inflammatory (probably from the exem. and ever.). Exemestane tablets on the web cost £167.59 for a 30 day period and Everolimus £2822 (how much it is for the NHS I don’t know) and certainly the Oncologist said she would have to get approval for the Everolimus. Other potential treatments (for the future) Tamoxifen (in which case I will have to stop the Clopidogrel which stops my platelets from clumping together so that I don’t form clots easily and would become a ‘bleeder’ when combined with the Tamoxifen) or Fulvestrant which would mean jabs in the bum!!! On my new treatment I have to go back on 18^th October for another appointment and blood test to see how I am coping with it. So far no side effects although have had a few hot flushes.

Received a copy of the BC consultant’s letter which says original tumour is now at 11x9mm with architectural distortion over 80mm in area (boob looks fine here externally but could be distorted internally). Reactive lymph node (existing known tumour) is 11x11mm!!!!! -flaming heck – with cortical thickness of 8mm. New area of concern, from the nipple approx. 90mm, is a 16mm length area of ‘concern’ with bilateral benign calcifications. Can feel this. Can also feel this ‘disappearing’ as the exem. and ever. work (only 7 days in!!!!!). Also mentioned ‘two neoplastic appearing lymph nodes’ – on this I don’t know if one of them could be the one already mentioned or whether there are now 3!!! I now have copies of the scans and I think there are only 2 lymph nodes ‘affected’. Can’t feel either.

Letter also quotes putting me back onto Anastrozole!!!!! Not the Arimidex. Sheesh. (GP said £1 for generic or £80 for original.) Wonder what the GP’s going to make of the new treatment costs!!!!!!!

On top of all that I am sorting out the house of stuff I really don’t need so that I can sell up to move back up North. Houses there are cheaper to buy and I can use the left over equity to supplement state pension when I retire. However I will also use some of my personal pensions 25% tax free portion to find an alternative therapy outside the UK or try to find out if I can do this at a clinic I have found in the UK – will need clearance and approval from the powers that be in the UK for UK treatment but it will not necessary for outside UK unless I try to get NHS to fund for me!!!!!

So much to do. Take care of yourselves ladies (and gents). Will come back on my discussion after 18^th Oct appointment with the necessary blood test.

Hi 

This has been a really interesting discussion to look at , but too long to look at it all though ! I might be missing something but reading your earlier messages you wanted to look at alternatives to the conventional route , I am wondering which ones have you tried ?  It looks like you are having various conventional drugs now but have not had the surgery to remove the lump ? Would you at some point now have the surgery to stop you having to take these drugs ? Could you also let me know what alternatives you looked at and (because as I said I might have missed than) whether anything worked for a while or why you discounted them ? 

Good luck with your next blood tests

Jo x

Exemastane NHS price for 30 days is £8.10

Everolimus NHS price is not available because manufacturers have agreed confidential discounts with NICE in order to allow use in certain cancers.

Both drugs are "generic" so don't worry you're not breaking the bank!