Thyroid cancer

Hi RosieT, so sorry to read about your husband's diagnosis and treatment. I'm sure there have been occasional mentions of Lenvatinib on this forum before, it might be worth doing a search if you haven't already.

My medical team; surgeon/consultant, CNS and Endocrinologist at Birmingham QE have been very good from diagnosis to ongoing treatment and support 2 years later. (I was referred to this surgeon as a specialist in my variant of thyroid cancer). But my treatment on the hospital ward after surgery left alot to be desired if I'm honest. 

If you're not happy with how your husband's treatment is going, I would suggest putting in a complaint with PALs. Have you discussed your concerns with your CNS? And yes if it were me I'd move to a different specialist hospital. 

Hope this is of some help and you get some more replies with other suggestions soon.

Best wishes x

Hello

Thank you for your reply. I shall have a search about the medication. Thank you. Sorry to hear that your post op care wasn't good, but hope things are ok now and your getting good care now. Yes we have had PALs involved to get answers and now looking at transferring hospitals as still not happy. We know things are complicated, but its time critical, even though its not curable, he wants to live as long as he can. Even the CNS without saying I think gets frustrated with the current oncologist. As a family we feel he needs a specialist looking after him, rather then  someone with an interest in thyroid cancer. Just looking at different hospitals including the christie and marsden. Its such a stressful time. One day I just hope there's more cures for cancer, so others don't have to go through this.

Thank you.  

I was diagnosed with medullary thyroid cancer and recently had surgery, though they weren’t able to remove everything. I haven’t started treatment yet, and since the operation, I’ve only had a blood test done. I’m currently on the waiting list for a DOTATATE PET scan, but was told it could take 7–10 weeks, which has left me feeling a bit in the dark about what’s next.

Because of this delay and the complexity of my case, I asked my team about a referral to The Royal Marsden for a second opinion, specifically from Dr Kate Newbold, since they’re known for their expertise in thyroid cancers. They said they’d be happy to do that, but warned that any appointments already scheduled with my current team would be cancelled if I went ahead—it’s one or the other.

I decided to wait until I spoke with Christie’s first. I had my initial appointment with them yesterday and raised these concerns with the oncologist. She said they’re happy to refer me to Marsden if I choose, but recommended we start by doing a scan and more blood work, so Marsden would have current results to work from. She also said she knows Dr Newbold personally and would be happy to speak with her directly if I wanted to understand how Marsden’s approach might differ from Christie’s. So while it wouldn’t be shared care, she’s open to discussing my case with them if that’s something I want.

Since speaking with Dr Garcez at Christie’s, I feel like I’ve taken back control. She really understands my concerns and is happy to support whatever decisions I make. I had been doubting whether to pursue the referral to Marsden, especially considering the travel and expense, but after our conversation, I feel confident that I’m getting the best of both.

It’s a difficult time and for me it’s the wait that causes stress, doubt and frustration. At first I just went with whatever they asked me and advised however now I’ve learnt to speak out and tell them exactly how I feel about my care, and I have been listened to. 

sorry I couldn’t advise on treatment but I hope this helps

Hello thank you so much for your reply and telling me about your situation. I'm glad you have managed to get back control of your health situation and being supported. We haven't asked about referral to either Christie or the Marsden, but he has spoken to someone in Cambridge. They offered a bit more information and advice that we haven't been told before. I've also been reading the Chris hoy book about how he coped with things and he was at the christie. Where we live has no specialist cancer hospital so its long travel wherever we go. We still struggle to get answers at our local hospital and everything is slow. Probably lack of resources. Scan wise its only been mainly CT and MRI as asked about a PET and got told they don't pick up thyroid cancer, so to hear what you have been advised is good to know. Everything seems to be slow with getting tests done. I hope you get it done soon. I think I'll get hubby to push and speak out more and keep chasing. Wishing you well. 

I know how it feels, it’s almost like they leave it until you get in contact with them. Does he have a nurse he can contact? I spoken with mine and explain how I felt about it all and she took it into account and started chasing things and kept me updated. 

below is Dr Kate newbolds assistant she is very quick with replies and will aid in being referred and tell you what you need.

louise.winfield@rmh.nhs.uk

I’ve also put the number for Christies

speaking with them directly might give you more information and options, if you live some distance away they may be able to give you details of other people who can guide the both of you nearer to home.

0161 446 3000

i will keep you updated in regards to any treatment discussed if that’s the same or similar to your husbands, and also with information from marsden

Hello thank you so much for the contact details. Thats very kind of you to let me know and thank you for your help. Wishing you all the best and please do let me know how you get on. He does thank you and I think she can find it hard to get hold of the consultant to ask questions. As a family we feel it maybe best to get transferred and hope he gets better care. PALS have been involved as well to help and it feels I'm doing the research into what treatments are out there to help control the cancer. I shall definitely look in to the Marsden and Christie. Thank you. 

I work for the NHS PALS are great from my experience. They respond quickly and usually do speed things up.

take care the both of you, I wish you both well,