To have the op or try alternative

The treatments offered by the NHS are not cheap.  On top of all the screening tests that involve very expensive equipment (e.g.MRI machine) and highly qualified staff, I've had surgery and will be having 6 rounds of chemo, radiotherapy, herceptin for 12 months (v. costly drug) with regular nuclear medicine scans to check heart function, also hormone therapy.  There is a massive backup team, path lab etc. looking over cases.  Also the basic running costs of the hospital, keeping it clean etc.  It's often the alternative providers, and even private providers, that try to cut costs but still charge through the nose for their end product.  For example, chemotherapy is often given at home by private insurance, a lot cheaper because this means VAT isn't charged on the drugs and a clinical, staffed environment doesn't need to be provided.

Hi,

I live in Southern Ireland, and have private health insurance cover.  The cost to my insurers for my surgery, 6 Tax, 28 rads was €35,000!  If I hadn't had insurance cover, I would have had the same treatment, but I would have had to join a queue.

Yvonne

Hi Chloecat,

I'm sorry to hear about your diagnosis. I can see that the operation must be a very scary prospect, particularly if you feel that you don't have control over the decision. 

I think you've had some great responses from other Community members, and I really hope it has helped to read about their experiences.

It might also help you to have a look at our web page about alternative therapies.

Hi Everyone

Many thanks for all the posts ladies.  I'm still here.  Still not had the op and radiotherapy.  Still taking alternative herbal medicine - can't hurt (but how to quantify).  Saw Onc and now on Anastrozole.  Tiny little tablet!  Read some other blogs that I might have very painful joints with this but see how we do.  Asked for second opinion and waiting for this.  Live in London and I was amazed at what different hospitals offer.  Found one that has some innovative treatments being used as well as studies into new.  Don't think we are quite at the point where these less invasive treatments can be offered (except in studies) but I do think that some of these will be treatments for early stage breast cancers in the not too distant future.  I just got breast cancer too early! 

Mostly its down to funding for the studies.  The programme a couple of weeks ago to raise money for these studies was brilliant.  Cant remember how much they raised but all credit to getting this done.  Additionally stories in the news lately which mentions that, maybe, we don't all have to have surgery, radiation therapy and chemo! for our lumps - that I didn't know! BUT what we don't know is whether our cancers would just stay put and not do any harm!  And there lies the rub!  Wasn't too happy about the doctor who pressurised the lady to have the conventional treatment by browbeating her - think I would have kicked him in a sensitive area had he done that with me.  New guidelines coming out now put the onus on the consultants to ensure we are told fully of all treatments and to ensure that each lady knows their options.

I felt that with my onc I was just another patient.  It was only when I stopped the op, went away and did some research that we now have a better understanding of each other.  There was just too much hurry!

Anyway, when I've had my second opinion will come back to you with an update. 

Lots of love and hugs XOXOXO

Good for you - will be very interested to hear second opinion......you know yourself better than any doctor but doctors know cancer better than us so its a balance in my opinion......good luck

Hi there fellow sisters

Just a short update.  Signed the cyberknife petition (from a posting on this site/group) but lots more names required!  Was told of a conference happening this weekend 17/18 Nov in Totnes (www.totnescancercare.org - if you want to look it up).  Not sure yet if I'll go but looks interesting.  Still waiting for 2nd opinion but I have been told that the wheels are turning.  Still following healthy lifestyle change which is reaping benefits on my weight.  Still positive.  Additionally onc has written to my doc advising of endocrine treatment (Anastozole) and that they will see me again in 2 month's time (after 2nd opinion, etc.)

Additionally, can any ladies advise me if they have ever had flutterings/grumblings in the boobs from Anastozole?

Hi there ladies

Just returned to the website and thought I should update you.

Well I'm still here.  Have been on the Anastrozole since 31 Oct .  Correction to first blog - it is only one tumour not three.  Dimensions were 13 x 7 x 21mm.  In April 2013 they measured 7 x 5 x 6mm - reduced from taking the Anastrozole? and I put a question mark here because as you are aware from the thread I have been trying other ways in which to try to deal with the cancer.  Lymph nodes still clear from US's done.

This tumour is now under 1cm all round.  I had a further US 2 weeks ago and will be going back to the consultant on 1 August for those results.  US technician seemed to think it was almost the same (I am hoping there has been a further reduction if only a small one!).  I hope her comment was less than the truth!!!!!

I did get my second opinion and am now under that consultant.  I am very happy that he chose to continue with my lead - more than likely he hoped I would be changing my mind!!!!  I did state that I hadn't totally discounted surgery but I did think that taking away 6cm of breast tissue was a little excessive (only 0.27mm short of the size of a tennis ball - if its a ball size lump they will take away) from the initial measurements first taken last year. 

I wasn't enamoured of my first oncologist.  We had no rapport or understanding of each other - possibly going mob-handed with two sisters in tow could have unnerved her!!

Strangely, with all the other complementary therapies I am taking I am feeling extremely well.  I have no side-effects from the Anastozole, have only had one or two headaches, I have no indigestion at all which was driving me mad, a radical change of diet and with the good news of the reduction in tumour size I also have a positive outlook.  I do hope this is not the calm before the storm.......

But everything is still noted in my head and I will report back to you all after my meeting with the consultant on Thursday.

In the meantime I have been reading up on blogs since last November when I first wrote and I commiserate with, and support all the ladies who have been given the devastating BC diagnosis.  I do urge you to do the research and ASK LOADS OF QUESTIONS.  I have a long list (still) for Thursday.

Love to every one of you

Hello there everyone

I'M STILL HERE. 

New measurement was 5 x 5 x 7mm.  I'm happy with that.  It took 5 years to grow - cant expect it to just disappear.  Consultant was a bit negative in that he laboured on the last figure which had 'grown' by 1mm.  He neglected to say anyting positive about the other measurement which had gone down by 2mm!  As this is generally performed 'free-hand' I'm not worried until there is a consistent growth.  Having said that he did advise that they had found another area of microcalcifications of around 5cm! and were looking at a mastectomy now!  Said no.  Did my research and microcalcifications are only pre-cancerous in 20% of instances.  However you do need a stereotactic biopsy to get an answer and I wasn't prepared to be clamped onto a mammogramme machine for however long it took, take a picture, then local anaesthetic, then insert biopsy needle, picture to see if right location, take biopsy and probably take a few more pictures and more biopsies over the 5cm area to check the area.  Sheesh.  I already have a problem with mamms as one of the very first mamms I had I was clamped so hard it hurt.  I refused to let them repeat these any more for the longest time until a very nice lady said that she would do the mamm very lightly.  Since then altogether I have had two further mamms - a total in a year of 4 in a year of ionised radiation - a known carcinogen.  But hey its a risk anyway isnt it!  There just aren't any other diagnostic tools available!  Lymph nodes still clear under US.   Still watching what I eat.  No meat, dairy, rice, pasta, coffee, processed foods, canned foods, sugar, just fresh vegetables and fruit and heavy partaking of supplements, ie turmeric, resveratrol, basically everything to keep my immune system topped up.

Have now got copies of all the scans and records just so I can see what is being recorded.  Have read them but need to analyse them.  Still thinking about and researching all the other therapies around.  Give the Anastrozole a little longer.  My next appointment with the consultant is 9 January 2014.  Keep your fingers crossed for me.

Love to everyone having to deal with this nasty little critter......

Hey Chloecat, I'm glad you are still here, and with some positive results too.  Your approach seems to be working for you, and I'm pleased that you have found this way.  I think your attitude bears out something I really believe about the best way to go through cancer treatment - it is good to be authentic, to deal with our situation in the way which is right for us; which may of course not be right for another person.  Good luck for the rest of your treatment!