Hi, Apologies if this is a bit long. I am actually writing this on behalf of my sister. She is 79 yrs old! (Knowing that, this is the point at which interest in helping her ceases !) However, she is a very FIT 79, she has just come back from a long trip to the Amazon !) It has been discovered that she has advanced endometrial cancer 2.5 months ago at the Royal Free. They say she should be referred to the UCH and their MD Team will decide what treatment to use to try and at least stop the disease from advancing further and at least slowing it down. One Oncologist at the Royal Free did say that she would be able to tolerate the chemo because she is strong. A Gynae there (who never even met her!!) decided NOT to offer her treatment at all. Her decision was based entirely on her date of Birth in her notes. Hence she heard no more and her GP rang her once to discuss end of life arrangements!!
We would really like her to be referred to Dr. Banarjee at the Royal Marsden, but are experiencing resistance to do this.. and time is marching on...ANY tips would be most gratefully received
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anniec11
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I'm sure our members will respond to you with lots of helpful advice. I just wanted to let you know that in the Discover section (link at the top of the page) there is a post on getting a second opinion which you may find helpful.
It may be different on a tablet/phone via an app, I'm not sure. If you look at the forum via the website it should be at the top of the page, underneath the banner, with the options Home/Posts/Discover/Search etc.
I hope you can find it. Here is a link for the second opinion post in case the Discover section doesn't come up for you: healthunlocked.com/ovacome/...
Hi, I felt I needed a second opinion after a visit to my Oncologist in May, so I went to see my GP with a list of names of people I had found who specialised in low grade. My GP referred me and I went to see someone at UCLH who was able to answer the questions my Oncologist couldn't (she by her own admission doesn't know a lot about low grade as its one of the rarer forms of disease). Hope this helps, Kerry xx
I asked my GP for a referral to Hammersmith and Chelsea for a second opinion, under the NHS but you can also ask for a private referral.
They do not have to refer you if they think the care you have is sufficient but I’ve not heard of anyone being refused
I would be surprised if she was refused based on age. It may be the extent of disease that’s the issue. They all ask for end of life plans whether in your 20’s or 80’s I was diagnosed in my 40’s but still had to provide the info
You could ask for a private second opinion it will likely be quicker. I think the cost is around £250 - £300. It’s important your sister is in agreement with her treatment plan and happy with her choices, even if the Marsden is unable to take her as an NHS patient. You could also seek a private second opinion at say the London Clinic. What has been the reason given for the delay in referring her to UCL, if she was diagnosed 2.5 months ago?
Your sister’s fitness will stands her in good stead.
I decided to pay for a private consultation at the London Clinic. I asked my GP to refer me. It cost £350.00 and I waited less than 2 weeks. It was worth every penny and I was sent immediately to the UCLH Research Facility and am now on a clinical trial.
Having worked in the NHS for many, I never came across any ageism in the treatment of clients. It is legally and ethically just not allowed. If the decision had been made purely based on your sister's age rather than fitness to tolerate and respond to treatment then this could amount to negligence. However, the fact remains that if you feel unsure that your sister has had the best possible advice and treatment, which can happen at any age, then she is entitled to a second opinion. I only have experience of the Christie in Manchester but find it wonderful.
I do hope you get this sorted as it's so important to find peace of mind for you all. I also hope your sister finds good management of her condition and goes on to have many more adventures.
I also requested to be referred to the Royal Marsden as I feel I was written off After having 6 rounds of chemo and a new cancer developing in my breast, but I have been rejected, they said they are not taking on any more for 2nd opinions. I was hoping I’d be a suitable candidate for any trial drugs, I’m 55, so hopefully their decision wasn’t age related. I think they are dealing with a lot of cases at the moment and have to turn people away that are perhaps incurable. All I can suggest is you keep on at the Dr or ask her clinical nurse to recommend someone else. Good luck, to both of you. X
I would like to thank everyone who took the trouble to reply to my request for information. I am aware that this could have been mis-interpreted as someone who can't come to to terms with what is happening..or not happening, as the case may be. However, that is not the case. My sister waited for 2.5 months, following many scans etc., for a Gynaecologist to finally call her to the Royal Free to tell her that her cancer was too advanced and they had decided not to treat her!! This was after chasing the hospital for some sort of communication many times. However, the Gynae also then went on to say that now that she had actually met my sister, she thought that there might well be a case for treatment and she would put her name forward to the UCH. So she had decided on NOT treating her based on what??? Perhaps you can see LittleScan how we may have reached the conclusion that we did?! However, I finally phoned my sister's GP who seemed unaware that nothing at all had progressed, and there was STILL no recommendation to the UCH, that he contacted various Health Professionals and now my sister is having a consultation with an Oncologist on this coming Tuesday at the UCH, albeit this Oncologist's arm had to be twisted somewhat by the GP as she wanted to leave seeing my Sister until the Consultant came back from holiday...at the end of November!
I do found this apparent complete lack of interest extremely worrying, both for her sake as well as anyone else who may be in a similar situation as she is, but has no-one to speak for her. Thank you all again.
Hello: I think the oncologists are so stretched in London. I paid for a second opinion at the RM and she did say she couldn’t take me on as too many patients and I should stay at UCH : only could get over to the Marsden if I was on one of the early clinical trials ( which I need to look into ) meanwhile we’ve moved up to Manchester as I unexpectedly ended up at the Christie ( which is a great hospital!)
It’s sad there is such a huge amount of women coming through their doors in London - they are trying their best but so stretched x
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any advice on what to do next? My mum has just been diagnosed with PPC and the doctors at our Hospital have already given up?! HELP?!
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