I’m writing on behalf of my mum who was recently diagnosed with grade 3 BC. She can’t face a lot after such sad news so I am trying my best to support her.
At the moment she is being treated as part of the NHS; she has had a BC confirmed diagnosis and some test results (some hormone tests but not HER2 yet, and the histology test is showing grade 3). She needs to have surgery but needs an MRI first to help determine the course of surgery. There is no sign yet of lypmh node involvement but I understand this many only become apparent during surgery.
She has been back and forth to the BC clinic a few times over the past month over this. However, she has no confirmed date for the MRI yet alone the surgery and the delays and back and forth are really bothering her. Its looking like surgery will be at least a month away.
I want to investigate whether going private (if only for the MRI and surgery) would help in speeding things up? I won’t say the money is no object, but its not the most important thing and we would help support her if we think going private would make a difference. I’m not really sure where to start with this. Has anyone had experience of going private vs. the NHS for this stage of the treatment pathway, and did you feel it made a difference? There a number of things she is worried about; anything we can do to reduce the ‘waiting times’ would be helpful at least to her state of mind.
I did not go privately, but other’s here have & will be able to advise.
For most of us, there is not a lot of difference in timescales on the NHS & the vast majority of us are treated within the recommended timescales. I my case, my surgery was 2-3 weeks after diagnosis - although obviously, there are often other investigations to get the right treatment plan, so times can vary.
There is no easy way around the waiting, it is a difficult time as the uncertainty & anxiety around diagnosis is hard to handle - we’ve all been there, but it does settle down when the treatment plan is in place.
It will get sorted out & although this is the toughest stage to get through, a few weeks here or there does not make much difference & we do get through it.
Obviously, you’ll all make the decision which is right for you all.
Hi Mouse, sorry you find youself here. It’s a tough one really as adding another dimension of communication may add to the complexity. From diagnosis to treatment was about 5 weeks for me (including CT and MRI scans) and the waiting for extra scans is a very anxious time. The best suggestion I can offer is that you contact PALS within your hospital to find out what’s happening or chat with the breast care nurse and/or speak to McMillan information centre to help you navigate the system. I hope things soon speed up as the anxiety gets much easier once the treatment plan is in place. xxxx
Hi mouse
I too had grade 3 lobular bc, and the waiting around for various tests at the start, is the worse part. From initial mammogram, to surgery, it took about 2 months and I was very anxious about how long it was taking. But this did not change my treatment plan. They need to get everything in place before they start the treatment.
Note of caution on going private… I’m not sure that you can dip in and out of private health care. I would assume if you started with it, then all treatment would then have to follow? I think you need to investigate that further.
Sue xx
I have private medical cover and expected to use it for my treatment. But when I discussed it with the surgeon he told me I wouldn’t get anything by going privately that I wouldn’t get anyway via the NHS . That certainly seemed to be true as regards surgery, but I then had long delays waiting for the oncology appointment and starting radiotherapy. The oncologist was quite frank that I wasn’t a clinical priority as I only had DCIS and they prioritised women with aggressive and fast growing tumours.
I’m now more than two years past diagnosis, and able to take a more reasoned view of the delays and anxieties that I went through. And I’m left with the impression that when there’s clinical evidence that treatment is needed urgently, the NHS will get a real move on. The problem for me was my anxiety levels were going through the roof and it seemed like no one was doing anything, so private treatment that speeded things up would have helped my mental state. But there would not have been any effect on outcomes in the end.
Everyone has different experiences, my family has dipped in and out of private treatment in the past. We paid for my son to see a consultant and moved his surgery date date forward by 5 months for the sake of a £200 private consultation (the operation itself was done on the NHS) So it can make a difference. But I’m not sure whether it does in urgent cancer cases.
I hope your mum comes on here where there are so many women who have been through the same experiences, this site was a real life saver for me. But you are doing a great job in supporting her, I’m sure you could do with support yourself, our families also go through so much. So sending hugs to you both.
I also have private health care but everything was done so much quicker and easier on the NHS so I stuck with them and couldn’t have been better looked after.
I started out down the private route but had to get all copies of tests and diagnosis myself from GP and send them to the Nuffield then surgeon couldn’t do op for 3 weeks as he was on holiday, it was just doing my head in so kept my NHS appointment and was so glad I did as they had me in within the week to have lumpectomy.
The only thing I would have gained by going private was my own room post op but as it was a day case it didn’t make any difference. Radiotheraphy would have been in the same place as NHS.
And As an added bonus for not using my private health ins I had a £3000 payout from them!
thanks for taking the time to respond to me. I appreciate it. Of course I will let my mum make her decision, but it is helpful to be able to share with her some other people’s experience so she can feel more informed in her decision making.
Hi just wanted to add to the mix. After my diagnosis I wanted to get the damn thing out asap!! I was given a date 4 weeks in advance for surgery. After much discussion with my Husband and family and due to all our high anxiety levels we decided to pay privately for the surgery. This was swiftly arranged within the same week and I was successfully operated on in our local private hospital. I had fantastic care and a wonderful surgeon with whom I now have follow ups on the NHS. My radiotherapy was done on the NHS so it is possible to dip in an out of the 2 systems. I must say it was worth every penny for piece of mind and the care and compassion I received. I am not saying you won’t get the same on the NHS but for me it was a no brainer. Good luck to your Mum whatever she decides.