Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

To have the op or try alternative

Ghost44
Posted by

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

Dreamthief
Posted by

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

annieYour username
Posted by

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

chloecat45
Posted by

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 18th 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 18th Oct appointment with the necessary blood test.

jowoomot
Posted by

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

ArgyMargy
Posted by

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!

Carolyn28
Posted by

I got another reply from a charity saying they only fund research not treatment

WHY ???

WHY 

WHY

WHY

???

Surely there is a gap in the charity market. Surely people want to raise money so that people can be treated?

A mate of a mate just succumbed to secondaries from stomach cancer and I'd have thought proton beam could have extended his life but he didn't get the chance, was just told,  sorry there's nothing we can do. 

What they usually mean is there's nothing available to us under the current budgetary guidelines ?  because we haven't invested in new treatments. 

I realise that if you want to cater for the millions of patients on the NHS you do need a one size fits all approach and there won't be time or cash available to try alternatives, whether they be a different approach with the available drugs or a completely different set of alternative treatments. 

BUT

Surely this is where one of the charities needs to step up.

What Chloecat is doing is research, it's what scientists do, use themselves as guinea pigs. 

  apply for a research grant !!!

Carolyn

xxx

Optimistic
Posted by

Just curious do you know the cost of anastrozole in comparison thanks. 

chloecat45
Posted by

Hi All

Thanks for the feedback.

jowoomot - have only, as yet, used the endocrine therapy to reduce and stop spread - which as we know was not working due to being on Letrozole for a year.  The Exemestane with Everolimus and the Lemon Mucilage is however working for me as I can feel the 'new area of concern' getting smaller after, now, only 8 days.  Such a big grin on my face when I felt it yesterday.  My preferred treatment is Sono-Photodynamic.  A photodynamic trial is running at the Royal Free Hospital but at the moment is suspended as Prof Keshtgar is ill and unfortunately all his registrars etc on this trial have moved from the department.  It is unknown when this may restart.  However they were trying to get NICE to approve lumpectomies rather than mastectomies which would also help with trial patient recruitment but has succeeded into Phase 2 of this trial. What this entails I haven’t been able to find out as all the locums I have seen have not been given details.

The link below will take you to the Daily Mail article on the trial.  It was published I think in November 2013. Unfortunately I would not agree to the mastectomy and didn’t want to mess up the trial by scarpering before the mastectomy and the Prof said I didn’t qualify anyway!

http://www.dailymail.co.uk/health/article-2439464/Photodynamic-laser-treatment-kill-breast-cancer-15-minutes.html

 

As to other treatments, Rigvir, GC-MaF – Rerum is its’ successor, CryoAblation (cold) and ThermAblation (heat), among others. ALL being used outside of the UK. HiFU I watched from a video by UK doctors/researchers on YouTube at a medical conference. This can give a 2 CELL margin with no surgery - not the 1cm margin as dictated by invasive surgery.

Argymargy – many thanks for clarifying the price/s. A question I will ask on the 18th is how long will I be on exem. and ever. I have seen discussions elsewhere showing up to 18 months or more.

Carolyn28 – what a good idea about getting a research grant for treatment! I can but try.

Optimistic – last check on cost of Anastrozole was about £3.75 for a pack although some manufacturers are more expensive. I think some pharmacists through their suppliers are trying to source cheaper tablets so that they can get better margins between the cost the NHS pays to them for the supply.

Keep the feedback coming.

ArgyMargy
Posted by

NHS pays £1.27 for 28 tablets of anastrazole.

Optimistic
Posted by

Does anyone know is Exemestane meant to work better than Anastrozole. A friend has been prescribed this and I'd only heard of Anastrozole and Letrrozole. My cholesterol was a bit high at my last blood test and high cholesterol is a 1 in 10 risk on the Anastrozole packet don't think that's  the case on Exemestane does any one know anything more about this or the difference in these drugs. Thanks.

Dreamthief
Posted by

Hi  

The main difference is that Exemestane is steroid based where Anastrozole and Letrozole aren't.

Exemestane (also called Aromasin) is often offered if patients are suffering severe side effects like joint / bone pain with the other two, but it may not help with any menopausal feelings :(

Hopefully a few ladies with experience of being on Exemestane or who have switched to them can help more ?

BCC has this leaflet about it -

bcc46_exemestane_2016_web.pdf

G n' J

jowoomot
Posted by

Hi Optimistic

From what I've read (I'm no expert) they match each other in the results, they just work in different ways. 


Jo x

Newdawn
Posted by

Hi  Chloecat! I'm absolutely intrigued reading your posts because I've never even heard of some of the treatments available! I suppose if your lucky enough to be near a larger hospital they have more to offer! I must say I fee like I never put nearly enough time and effort into the whole research thing when I was diagnosed 2 years ago! Same type of cancer as yourself! I simply went Down the mastectomy route! No questions asked!  Could I ask (and you don't have to say if you prefer not to)! But why did you not think a mastectomy was the best approach at the time for yourself? I'm starting to doubt my ow choices now! Take care and good luck with planned treatment! Gill x x x

chloecat45
Posted by

Hi Newdawn

As with any new treatment it has to go through trials even if they have been approved overseas.  At least we can say that NICE are being thorough on this score but it just takes too long to get them to understand the potential benefits for all cancers.  Trialling them for use on these other cancers needs to be done and as usual there is a cost factor.  If you have the money then you can seek these abroad.

It isn't necessarily being linked to a big hospital that these potentially new treatments have arisen but through the internet.  Researching your own cancer can give you more information than the short amount of time your consultant, in the UK, can give to a patient.  I know just how fraught my long waits at appointments have been. 

Initially they wanted to do surgery (lumpectomy) followed by radiation to which I said No.  Was put on endocrine therapy (Anastrozole).  They felt last year that this had stopped working so put me on Letrozole for a year which didn't do anything.  Hence the Exemestane and Everolimus (with Lemon Mucilage).  I will be asking my oncologist on Wednesday about the Lemon Mucilage.  Interesting addition this Lemon Mucilage.  It is simply high dose lemon with fibre being used as an anti-inflammatory but will ask questions of the oncologist on this and how it became to be included in this treatment.

Mastectomy only offered as a direct result of the extra 2 lymph node 'tumours' in the armpit as well as the 'area of concern' (since I haven't had, and I won't have, the stereotactic mammogramme biopsy). They did actually put forward a mastectomy when they said they had 'found' something at the 10-11 o'clock in the same boob way back.  But again I said No.  (It was only microcalcifications though they believe these to be a precursor to a tumour - nothing happened here yet.)  Biopsy, very likely would be done with a fine needle aspiration which I will never have that again - so much bruising and I think resulted in the second armpit 'tumour' through 'seeding'.  Any invasive surgery whether minor or major comes with risks!  In all instances it is hoped that your immune system gets you through.  It is also said that at some point in the future surgery will only be used as a last resort, not initially.  Surgery has its' place but in my opinion not for breast cancer.  The argument for surgery is that it lessens the cancer burden so that the immune system can begin to deal with circulating cancer cells and mop up any residual cancer cells at the excised site/s.  Medical treatment here is chemo and radiation but ultimately it is your own immune system.

Don't doubt your own choices, ever.  Work to ensure they were the right choice by keeping yourself well.  Being absolutely selfish here is the key.  Look to your lifestyle and make changes for the better, get rid of anything that is giving you stress.

Thanks for your good luck with the planned treatment.  Appointment on Wednesday 18th will be interesting.  Wonder what they will be looking for in the blood test but I will find out.

Love and hugs to everyone