Update on Mum after advice on here re second opinion

[Tulip15]

Hello all,

I posted before Christmas and got some wonderful advice about pushing for a second opinion about surgery for my Mum after The Christie said they wouldn’t operate after six cylcles of chemo which had left her cancer ‘dormant’.

After some research we asked for a referral to the Queen Charlotte Hospital in London and she has now had surgery and is recovering well at home. Surgery is not usually performed after chemo has finished so Mum is an unusual case but we are so glad we pushed for a second opinion and didn’t give up.

We were originally told Mum (after cycle 3 and 6) was not a candidate for surgery as she had multiple small sites of cancer scattered all over her abdomen. The verdict in London was a lot more positive and after looking at her most recent scan we were told that there wasn’t much cancer to remove, that the operation wouldn’t be too complicated and the risks were minimal in comparison to other surgeries they undertake e.g no involvement of other organs. We were also told that Mum had had an amazing response to chemo and it had worked really really well to have got her to the point she was at prior to eventually being offered surgery. This all begs the question as to why she wasn’t offered it earlier, but that’s another story which we will have to investigate further at her three monthly check up, but for now we are so happy for Mum to be NED.

I’m posting this to remind others that you are entitled to a second opinion on the NHS and to push for one if you are ever in doubt, even if you are being treated at a major cancer centre.

The experience we had in London was amazing and the team were wonderful and very positive about Mum’s situation. They have said Mum can go back there any time to see them again if she would like to. If I ever get diagnosed with this awful disease I’ll be asking for a referral to them straight away.

As an aside Mum is also doing a lot of holistic / natural treatments alongside the conventional and I’m in no doubt that this has contributed to the success she has had so far in her journey. Whilst this obviously cannot be proven it seems to have worked so far and appears to now in hindsight have gotten her to a really good place even with chemo alone despite the prognosis we were given prior to the second opinion.

Thank you to those that responded to my original post and I hope you are all doing well.

[Lyndy]

That’s great Tulip15 ..so pleased for you and your Mum. Has she been tested for genetic faults like BRCA? Just noting that she responded so well to chemo...I also had an amazing response to chemo and discovered later this is typical in BRCA carriers (which I am). It also brings extra treatment options.

But so glad you pressed for second opinion...well done! Lxx

[Tulip15 in reply to Lyndy]

Thanks for your reply. She’s had an initial appointment but they need her to gather more family background information before they will test her x

[Hidden]

Great news - well done both of you x

[ShropshireJo]

Very good news. So pleased for you Jo 🌺🌻🌼🌹🌸

[Lily-Anne]

I'm guessing you saw Christina? I saw her in June but had no solid tumour to remove, so emailed her and she is going to see me again now I have something heftier so to speak.

Great news about your Mum, I'd choose a 2nd opinion every time, my gynaecologist surgeon actively encouraged it.

LA xx

[Tulip15 in reply to Lily-Anne]

Yes, we saw her. What a wonderful lady. We weren’t even advised about a second opinion from the original hospital. We were just told ‘no surgery’ and sent away to return three months later to see what was going on. Good job we did some research 😀

Good luck seeing the Prof again. I hope you get good news x

[Lindaura]

That was stunning and wonders need for all of us to hear.

Although I simply cannot understand why your mother was not offered the operation, that most of us have undergone as part of our treatment, in the first place, I am proud of your bravery and determination to get that second opinion and to push for treatment you believed in.

Plus, you have set an example for us all to follow!

Congratulations and good luck to you and your mother.

Best wishes,

Laura

[Tulip15 in reply to Lindaura]

We cannot understand it either. It’s baffling. Some people would just accept it which is even more worrying. Anyway, focusing on the positives for now but I will be asking some questions next time we go for a check up.

[angeladale]

Thank you for letting us know such positive news and so great that you came to London . There are great people in lots of hospitals actually , but you just have to get lucky !

My first operation was incomplete because the surgeon felt there was too much scattered cancer and that only chemo would clear it all . I had second op to complete that which was unfinished. Diagnosed in 2011 , lots of chemo since , and a trial too , still here , still looking at options . Good luck to your mum and well done , you !

[Kryssy]

That's great news to hear and so pleased you got your second opinion and things have worked out well for your mum. I'm not a surgery candidate and I have been told clearly why not and I accept it. Some of us have too much cancer around the body, especially in lymph glands, to risk taking out the primary site so that the cells in the lymph system just move on elsewhere. At least I know that for now the cancer isn't moving around willy nilly. Maybe, in the future, they may decide that it's ok to take out the ovaries and look at the bowel tumour and peritoneum tumours at the same time but for now I'm happy to just have reduction in all tumours and some disappearance in others, especially in the diaphragm and pelvis. Whilst my lymph system is infected I'll leave well alone.

All power to you and your mum

Love Kryssy xxxx

[Caleda4]

Hi Tulip, Thank you for posting the details about your mum's second opinion at Queen Charlotte's Hospital.It really is worth seeking advice like that as other surgeons see things so differently. Anyway really great news for you & your mum & long may she continue to keep well. xxx

[Hidden]

Delighted to hear your Mum in doing well and definitely would also urge people to get second opinions when all seems lost. I agree with Lindy, perhaps a Braca Genetic test is another thing to consider, wishing you and your Mum well

[Kez150]

Hi Tulip,

That’s fantastic news, I am so pleased for you both!

My mum is also due to be having her surgery soon after completing her 6 chemo cycles. Can I quickly ask you did your mum need any chemo after the surgery to ‘mop up’ any tiny cells or do they not do that? They’ve never told us.

Best wishes, kez xx

[Tulip15 in reply to Kez150]

It has been mentioned but will be up to Mum and her original consultant. As they don’t usually perform surgery after chemo there’s no set protocol x

[lesleysage]

Hi Tulip,

Brilliant - on both counts...the QC team and Christina (I'm certain she and the team saved my life five years ago after Addenbrookes said it 'too risky') and also for your Mum focusing on growing healthy cells through food, gentle exercise, good rest and complimentary stuff. My GP was very clear to me that "growing healthy cells" was the one bit of this S-H-one-T disease I could take charge of....couldn't kill the cancer (that's for the medics) but it was my best strategy for as long a remission as possible. Thanks to Christina et al plus his advice, I remain in remission with all its inevitable ups and downs!

Warmest wishes, Lesley