Breast Cancer Care Forum

Red Robin & Treeze   Following my diagnosis and treatment i tried to get my affairs in order, checking my life insurance etc   My existing life insurance went up 100% (i had paid it for 30 years...). I am unable to get any other insurance at the moment but am reliably informed that i may be able to get life insurance after 5 years 'NED' but more likely 10 years as i am on Letrozole for 10 years.    Following my diagnosis i can't get Critical illness   Butterfly x   ... View more

I prefer Actavis if possible if not accord.   Cipla made me feel like i had Flu x100.... (I exagerate not).  TEVA i can hardly walk, my joints creak.   For some bizarre reason last month i got one month of Femara which was great.   Side affects are pretty grim, headache, bone and joint pain fuddled head etc but my pharmacist does try his best to get the right one for me.   When i took Tamoxifen for 2 years TEVA was the best one and yet on Letrazole i can hardly get up, have to have my breakfast then take Paracetamol with Naproxen before i can get moving (i then go swimming which is helpful).   It is frustrating when we struggle to get the right one for us.  Butterfly x ... View more

Not 10 years yet but i'm planning to get there... When I was diagnosed in 2012 lots of things went through my mind including my lovely Son would get married and i wouldn't be there.  I then started lookig at research on survival stats  5 yr and 10yr  (told myself they were years old and before Tamoxifen 'cos i didn't like what i was reading) and when the BC Nurse continuously reminded me on positive days that i was Stage 3 with a large (6.5cm) Tumour.  I wanted to punch her.  Since then i have seen a different Nurse who I felt was much more appropriate.     They have to be honest and i was grateful for that however my Consultant suggested Chemo first as the tumour was large and most likely to have spread.  I had 6 x FECT (gruelling) Surgery x 3 then Radiotherapy, I have since had reconstruction and surgery to other side.  My treatment took 12 months in all and it turned out to be 6.5cm grade 2 stage 3 with only 1/23 node positive.  All nodes removed as tumour was 4cm+   The diagnosis came only 12 months after my first Mammogram, the Consultant was shocked and felt it must have been missed, she requested the Mammogram and it was clear.   So Diagnosed September 2012 and i am just coming up to SIX Years Survivor, due to see the Consultant next week and i think she will discharge me.  Since my treatment i have had every therapy known to man,  i have really struggled.  (I work in Mental Health / have been flogging therapies for years).  I do need to have some further corrective surgery but have been too busy living life.   My Son did indeed get married, i went down to part time at work, looked after myself better (More downtime, better diet, less alcohol, more exercise.....)  I am just changing my Job which i never thought i would do and am so looking forward to a new challenge.   I can only say that i did used to get very angry and then very sad that nobody could give me time frames and my Consultant still only ever says NED (no evidence of disease).  I had a lot of therapy to come to terms with the uncertainty following such a diagnosis.   The longer people don't have recurrance the less likely they are still to be on this site so think it is unlikely we will ever get a true picture of the number of long term survivors.  I do consider myself to be one and am grateful for every day, it definately changed my outlook and way of life.  I am physically high maintenance.  The Receptionist in The Beauty Shop is 60 and had Bi lateral Mastectomy 20 yrs ago.  IDC in one breast indicators in the other, She did 5 yrs Tamoxifen at the time and now nothing.   Breast Cancer Care have really good movng forward courses, my local Cancer Care Centre offered complimentary therapies and there are Maggies Centres everywhere, I found all of this very helpful.   Hope this is helpful, please ask anything that you need to know, and surround yourself with kind and positive people.  Good Luck with your recovery.  Buttterfly xx         ... View more

Hi Kate   Sorry to hear you wasn't able to get a quote.  You do wonder sometimes just who is deciding how much crap to chuck at one person.....My tumour was grade 2 stage 3    6.5cm in size   but i was 50 and ER+8 PR+8 so ideal candidate for Tamoxifen now Letrazole.  It really does have a massive negative impact on your body.  I am a 55 year old in an 80 year old body.  I am very high maintenance, wrinkles need ironing out and i need Old Lady moisturizer......Hope you're doing OK at the moment and you are able to get this curent concern sorted.   Take Care  Butterfly xx    ... View more

Hi Kander   Not posted for a while.  I've just had a bit of a rant myself.    I am 6 yrs post diagnosis.  My life insurance went up x 3 following diagnosis,  i had paid it for 30 yrs plus....   We bought a house 2 years ago and despite having gone back to work, decent job with a pension including twice my salary if death in service..... I still could not have my salary taken into consideration or get any insurance.   I did at the time take out critcal illness for my Husband and an additional life policy.   The Broker i spoke with was only young but very knowledgeable and said i should stick with Scottish Widdows who had tripled my contributions. (his exact words were 'you're stuffed')  He did say the Insurance companies consider Tamoxifen & Letrazole as ongoing treatment and won't even consider cover.  He did say it had previously been 5 years but very recent research had indicated 10 years on Tamoxifen / Letrazole.  This was in 2013 and was only just filtering through so i did think he knew his stuff...    He said come back after all treatment finished...   I have managed to get travel insurance tho' without problems.  Hope you are well and remain so.   Butterfly x . ... View more

Thank you Michelle but sadly critcal illness cover is not likely to be available to most of the people on this site unless they already had it like yourself.  I have strongly advised my Son and Daughter in Law to take it out.   I was diagnosed in 2012.  Chemo,  surgery x 3 (second re construction still to go) Radiotherapy....2 years Tamoxifen then Letrazole now for 3 years +  5 more delightful years to go. I've had every therapy known to man...   I have manged to return to work, have a decent job and a good prognosis 5 years now NED but i still can't get any insurance.   I have a life Policy which i have had for 30 yrs plus.... the premiums have tripled for the same cover.. I am only 55 and we decided to move house 2 yrs ago.  Again the mortgage is only based on my Husbands salary, they wouldn't consider my salary despite havifng an NHS pension which has a Death in Service benefit of Salary x 2...   So i would urge anybody who has got it to claim and to tell as many other people they can to take it out.     Butterfly x ... View more

Aww Rockstarchic thanks for reply sorry i only just picked it up.  Love a bit of music, it really is a good distraction..   Rachy,   yes i did have positive node... just 1 out of 20+   My Consultant removes all nodes if Tumour is 4cm or above based on expeience and reseach.  (I think this is NICE recommendation as well).  She was amazed only 1 node and said she fully expected many more given the size of the tumour.  If she could put them back she would have done but.  I can be honest and say in the first 4 + years i had every type of therapy / counselling known to man with very little effect. (or so i thought)  4 episode whereby i had residential at Penny Brohn Cancer Care Centre.  I went to sleep thinking about recuurance and woke up thinking about recurrance.  It is only natural for us to compare our situations, we need reassurance.   In the last two years i have gradually got a little bit better, not so anxious and this year for the first time i have booked a holiday in advance.  Booked February to go end May.  I have even just applied for a new job, massive forward planning for little old me.    I have to say my Husband has just been a treasure throughout the whole thing which is helpful.  My GP has also been great keep sending me for Xrays when i'm panicking etc...  Rachy you allow yourself time to reflect, push for reassurance from GP / Doctors, take care of yourself  and your thoughts will slowly and gradually change.  Butterfly xx    ... View more

Mystery Mouse   I was given Letrazole after 2 years on Tamoxifen (took adcal D throughout).   After 2 years on this i continued to suffer bone density loss so Alendronic Acid addedd in.  My understanding is at least as long as the Letrazole (which continues to deplete hormones and cause bone density loss) therefore another 6 years for me.   Hope this is helpful  Gilly x  ... View more

Hi Lou & Rachy   You may never have seen any posts from myself.  I didn't join the forum until after all my treatment. Diagnosed in October 2012 with Grade 2 Stage 3  ER+8 PR+8 6.5cm Tumour.  Due to size and concerns to get Cancer under control my Consultant suggested Chemo first then look at trying to remove what was left of the tumour..... 6 months FECT with minimal response.  The Tumour was then 4.2 cm after removal.  Went on to have Mastectomy and Radiotherapy.  Since had various surgeries reconstruction and reduction to other side.   I had 2 years Tamoxifen... Fatigue / struggle to walk some days etc   (some brands give fewer side effects)   Consultant changed me to Letrazole after 2 years (Just her preferred treatment plan) and told me to expect to be on them for a further 8 years.    So in answer to your question i am 5.1/2years on from Diagnosis.  I sill worry about aches and pains.  I have had Adcal D with the Letrazole for the last three years and for the last twelve months i have been prescribed Alendronic Acid once per week to help prevent further bone damage.     I think it is partially side effects from medication and that it blocks the hormones that cause the ageing and the painful joints.  I try not to mither the GP but i'm not very good at that.    I have had every therapy known to man and in reality the one thing that helps to stop me worrying 24/7.  Now i only worry 23/7......  is Mindfulness.   Be Kind to yourselves ladies and allow time for recovery.  Take Care Butterfly 318 ... View more

I too have struggled getting consistant source.  On Tamoxifen TEVA was the best brand for me.  Yes it is cheaper but had least side effects for me.  TEVA Letrazole was the worst for me...... excrutiating joint pain, blurred vision, foggy head (I could barely function).  I find Accord tolerable but Sandoz is also good.  Supply is generally more reliable from TEVA as their production and distribution of these drugs is in Yorkshire.  My Pharmacist will always try to get the Brand i want but sometimes takes a while.   Good Luck with getting supplies Ladies.  Butterfly 318 x ... View more

Evening Jill 1998   Tamoxifen i could just about tolerate TEVA, some of the others i struggled with my joints and sweats were really bad, up so much of the night.  So when i changed to Letrazole after 2 yrs i asked for TEVA... I hobbled around in the morning and had to start taking Naproxen for the pain.  I have since tried most brands and Sandoz i can manage but the best for me is Actavis, some side effects but tolerable.   Just like with the Tamoxifen i had to try different ones.  Take Care Butterfly x ... View more