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Confused and conflicting advice from NHS and Private doctor

8 REPLIES 8
Downbutnotout
Member

Re: Confused and conflicting advice from NHS and Private doctor

Hi Sesame - I'm also TN.

 

I think Eribulin is now available again (it was going to be taken off the Cancer Drugs Fund but it seems like it's been put back). As your mum has had at least 2 pior chemos I think she would be eligible to try it. I was given it after Gem/Carbo and then Capecitabine and I had quite a bit of reduction with my mets and it kept me stable for 7 months. I found it the easiest chemo I've had - basically no side effects at all, I even got back to fell walking having barely been able to walk to the bathroom after 9 days of Capecitabine. Last year I had 2 doses of Abraxane which reduced a lymph node in my axilla from roughly the size of a plum to the size of a grape in about 10 days. However, I then had the cheaper variety on the NHS and it stopped working after 6 weeks and I found the neuropathy quite bad even after a short time.

 

So what I'm trying to say is that there are options if your mum wants to keep trying, some can work well, quickly and improve quality of life, although we are all so different it's unfortunately a case of trying things with no guarantees.

 

I wish you and your family all the best. One consolation for your mum is that she has you to help look out for her.

X

funnyface
Community Champion

Re: Confused and conflicting advice from NHS and Private doctor

Sesame, My husband and I were just talking about people's choices of treatments for any type of cancer and what they are willing to handle. Each person is different. Their tolerance for pain, numerous side effects, religion, hope, family friends etc all com e into play. No one's choice is wrong!!! It's their life and their choice! Often if there is an event coming up they will even put up with more to make it through that. It is difficult for them to let go too. I know I often remember  a friend of ours who had a very fast growing brain tumor and how she was completely bed fast for a year and a half. She was in terrible shape.  The steroids made her weight climb from 125 pounds to over 300 in a year. She was so full of water it was leaking through her skin. She was in terrible pain, but still wanted treatment! I told my hubby that I wouldn' t want to be here like that. I wouldn't want to put my family through that! It is too much for them to watch! I would quit so they could have peace. Then again I'm not at that point so easy to say!! I wish your family peace! FF

Carolyn52
Member

Re: Confused and conflicting advice from NHS and Private doctor

Hello sesame
Just to say I read your post but didn't have anything useful to offer but lovely stress Head has given you some good advice.
Just sending you hugs and hope your mum takes the best choice for treatment.
Xxx
stresshead
Member

Re: Confused and conflicting advice from NHS and Private doctor

I'm sorry i havent really been able to help you much. All i can say is that i havea daughter who is 25 (i'm 53) and i would do anything to stay with her. Itis getting harder to keep trawling through treatments and it does catch up with your body eventually. The last thing your mum would want is to cause you extra worry...i cant begin to tell you the guilt i feel for ruining her life with this (even harder as i have just found out it is genetic and she has a 50/50 risk). I know, despite all this , that she would not want me to suffer any more than necessary when the time came and would accept my decision however hard it is on her. Whatever your mum decides, it will be out of love for her family. Easier said than done but try and stay strong and whichever path she chooses you will get through it. xx

sesame1981
Member

Re: Confused and conflicting advice from NHS and Private doctor

She has had a pleuradesis in one lung and a permenant lung drain in the other x

sesame1981
Member

Re: Confused and conflicting advice from NHS and Private doctor

Thank you so much for your quick reply to me.  It sounds like you have had your fair share of confusing and conflicting views.

Hearing your view on doing anything to survive helps me to understand how my mum must be feeling in order to defy the doctor and keep on fighting.  

 

I kow you are right and I have to support whatever she wants but i am finding it so hard.   I was just starting to come to terms with losing her and now im no sure where to put my head.  It really is a rollercoaster as i am sure you know.

 

x

stresshead
Member

Re: Confused and conflicting advice from NHS and Private doctor

Sesame, forgot to ask if your mum as breathless or in pain from pleural effusions? if so, has she been given a chest drain/pleurodesis? The procedure is not at all pleasant but do-able with pain relief and the pleurodesis is a procedure to stick the pleura together so the fluid cant build up again. Itmay make her more comfortable in the long run. I also use topical creams for my skin mets...jury is out on whether they are doing any good but certainly not making things worse. I am under a dermatologist and my onc agreed to let her prescribe efudix (which is fluroracil, a chemo) and aldara (imiquimod, used in skin cancers). x

 

stresshead
Member

Re: Confused and conflicting advice from NHS and Private doctor

Sesame, so sorry you have found yourself in this awful situation. I havent been there but i have had a similar experience. My secondary breast cancer came back in my skin, then hit the pleura and bones. In the beginning i wanted a second opinion and went to another hospital where another NHSdoctor upheld the views of my oncologist. I was doing a lot of research and came across the name of a Doctor who i wanted to get in contact with. My GP sent a letter but i just got a letter back saying what i had been told was correct and there was nothing he could do different. Not content with this we paid to go and see the same man privately. He was very encouraging and said there was lots to go at in the hormone and chemo field and recommended a particular treatment. As it turned out i couldnt have it because i had mutated from hormone positive to triple negative...something that had shown up on a biopsy 6 months before but no one thought to tell me.(I was misdiagnosed in the first place  for 5 months and not treated for 6...who knows if i had had treatment straight away what the outcome may have been???)

I cant comment on your mms prognosis but at 60 she doesnt seem to old for treatment and believe me, when its actually happening to you , you will do anything to survive. I have loads of chemo's including carboplatin and cape but am now at the trials stage as there are very few options left.

There is the possibility that the private route is a money-spinner rather than a viable option to help but who knows, It is a terrible dilemma. If your mum wants to try further treatment all you can do is support her in any way you can. I am sure she will know in herself when enough is enough. There are no easy answers but i'm sure others will be along to offer advice. In any case, we are always here to support you and your mum whenever you need us. Good luck. x

sesame1981
Member

Confused and conflicting advice from NHS and Private doctor

Hi there ladies,

 

I am hoping you can give me a bit of advice...my mum is 60 and has stage 4 triple negative inflammatory breast cancer with pleural effusion, pericardial effusions, spread on ureters (has stents) and a lot of skin mets now developed.  She has tried gemcitbine/carboplatin and capecitibine both of which have not shown to halt the disease progression (although one lung did dry up recently), she has lost so much weight, barely able to eat and is not steady on her feet at all.  Last monday we were told that she was not eligible for any more treatment by NHS and given 2-3 months left.  The doctor took us through all of the blood work, everything constantly declining, nothing moving in the right direction, kidneys are ballooned and liver function doesnt look good.  All in all a poor prognosis and advised that mum was too unwell for any more treatment and that her quality of life would be poor.  Hard and devastating as that was, we absorbed it, my parents made plans for hospice and told family and friends.

 

They went to see their old NHS doctor (since left for Private sector) and he has told them that she is definitely treatable and prescribed Abraxane and Avastin.  I am very concerned and confused.  If the NHS deemed her too ill for treatment, I am struggling to understand how a private doctor can give completey conficting views.  I feel that this doctor has given them false hope that this is a miracle cure, will cure my mum.  My parents want to go on with the treatment, which i understand because the alternative isnt great but I am worried that this will make the quality of her life very poor, she will not be able to anything while having treatment and we will cut our time together.  I understand and support the need to fight and try everything but i am not sure that the risk and quality of life is worth the reward that it might offer.

 

Has anyone been in a similar situation?  Or offer any advice?  There is nothing that i can say to make them understand it and i am struggling with the idea of losing my mum even earlier.  

 

Thank you all in advance for taking the time to read this.

Kind regards

xx