RE: Cancer Care Team

Hi and welcome to this corner.

I think that the term ‘Cancer Care Team’ will differ between cancer types but more so by where you stay and how your Health Board funds posts.

I was diagnosed way back in 1999 with a rare (7 in a million) type of incurable skin Non Hodgkins Lymphoma. For the first 14 years of my journey I only ever talked with my consultant and nurse team when I was having treatment but had no CNS or Key Worker as my health board did not fund a post in our Dermatology Department.

I moved to Oncology for my Radiotherapy so had contact with the Oncologist, The technicians who made my lead mask the Consultant Radiologist and the Radiotherapy Team…… then went Heamatology where I had a dedicated Heamatologist but was also seen by the other Consultants and an excellent CNS….. she was our go-to with all our questions.

I then was transferred to Glasgow (we live in Inverness) for my 2 Stem Cell Transplants where I had a significant ‘team’…… Head Consultant lead team of consultants, Consultant Radiologist and radiotherapy team, dedicated transplant coordinator, phycologist, dietitian and a late effects CNS.

My care was eventually passed back to Inverness and my great CNS and I would sit in videoconferencing with Glasgow….. I was also under a dietitian and Physiotherapist as zi had to to walk again.

I had my last treatment in Oct 2015 and was discharged from seeing my consultants and my CNS in Sep 2018 and only have yearly phone call with my Late Effects CNS after having full bloods and obbs  done at my GP surgery.

Hi Mjredstars

I think you'll find that the cancer care team varies greatly as to what cancer you have and where you are in your treatment. My initial team in 2013 when I was first diagnosed with jaw cancer consisted of my surgeon, a specialist dentist and radiotherapy doctor. My surgeon met regularly with a team of specialists in the area of head and neck cancers to discuss my treatment plan. I was under these 2 specialists for 5 years. After my op and finishing radiotherapy I would see both of these doctors regularly starting at 3 monthly and then stretching it out over time for 5 years.

With my second and third jaw cancer ops the team changed and more specialists were involved in my team. I had the same surgeon a different radiotherapy doctor, an oral maxiofacial surgeon, an ENT specialist and a specialist dentist, dietician, speech pathologist, physiotherapist, occupational therapist (the last 4 only short term).  Then for my reconstruction surgery a prosthodontist was added into the equation. I am still seeing 2 of these specialists regularly for checkups and the specialist dentist and prosthodontist for ongoing care. I am still in the 3 monthly checkup mode for 5 years. I have found all of the gang really supportive and helpful through the years.

So as you can see the team can vary and change. If you are lucky after checkups for 5 years you leave the system but I am yet to get to that point.

I live in Australia but I think that head and neck cancer teams work pretty much in the same way in the U.K.

What was your experience with your cancer team?

Lyn

Hi Mike & Sophie66,

Firstly thank yoyu for both taking the time to reply and share your journeys concerning your cancer. It sounds pretty much correct that it does depend a lot on where abouts location wise.

I live in the east of england ( Suffolk ) Im 47yrs and was diagnosed late in 2021  with rather a large tumour leading to Cervical Cancer. I also have a learning difficulty so struggle a little with understanding sometimes.

I also live alone, just me and my dog. Origionally I was told that I would probally have to have surgery to remove the tumour so had 1 meeting witrh a surgeon at Oncology at my local hospitall.

As it turned out because I have had quite a complex bowel surgery 6years prior to getting the cancer which is apparently quite rare called a cecal volvus with necrosis, basiclly my bowel had twisted completley and part of it had died because of lack of blood flow. so surgery deemed too risky.

Lucikly they managed to resection so avoided a bag. Because of this I was told I would have to have Chemo with radiation every day for 6 weeks at another bigger hospitall 39 miles away.

Then after that go as a inpatient for 2 weeks of internal high dose brachytheraphy.I saw a nurse at hospitall who I met once for five mins but that was all, that was 2022 and spent alot of time in hospitall as had boweel toxicity from treatment so saw my oncologist doctor maybe 2 or 3 times,

Ive now been in remission since jan 2023 and havnt seen anybody since.  Once every 5 months I travell to hospitall for scan then a month later i get phone call to tell me the result that is it xx not alowed any more treatment ever as body cant take it so just hope.

Hi Mjredstars it is very much a postcode lottery at times although I live in Scotland so Health is devolved from Westminster…….

Yes there are funding challenges like everywhere else in the UK but we do have a good joint-up communication system across our Health Boards so I could have my bloods done at 9am in our local Heamatology Unit in a Inverness and an hour later I could be in a videoconference with my consultant in Glasgow and they have my blood results up on their screen in Glasgow. 

Post Stem Cell Transplant my immune system was in wrecked Sinai was getting infection left right and centre….. in the 2 years post my treatment I was back in hospital 5 times (30 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2 and A Fib….. but on the whole I could call or text my CNS and she short circuited the A&E and got me into a ward quick and on IV antibiotics.

I am very thankful and I will say that her quick reactions saved my life a few times.

Hi Mjredstars 

Everybody seems to have very different experiences of aftercare, depending on where they live, but I am now in Nottinghamshire and had cervical cancer. 

I had treatment after my initial diagnosis, but 9 months after treatment ended I had a recurrence which ultimately resulted in an extensive surgery in March 2020. Since I was discharged from hospital at that point, I haven’t seen anyone from my original treating team/surgeons.

I was discharged from hospital the day the first lockdown was announced, and all my contact has been by phone. I am on what they call “patient led follow up”, so if I want to see my lead gynae surgeon (I had 3 involved in my operation) I just need to call and she will arrange a face to face appointment. She would also arrange a scan if I had any symptoms. I had a colorectal and urology surgeon as I have 2 stomas, but have had no further contact with them. 

This year I have had one follow up call with my gynae surgeon, lasting around 2 minutes where she asks if I’m ok, are my stomas working and do I have any symptoms of recurrence. I say I’m fine, and that’s it! I expect to have another call sometime next year. 

I need to stress I am quite happy with this arrangement for various reasons, and have been in hospital several times this year for an unconnected issue and further surgery which didn’t involve cancer. 

Sarah xx

Hi Mjredstars

You have certainly gone through the mill. Hopefully you are out on the other side now with remission.

Sounds as though your specialist is happy with your progress or you would be seeing him more often. Fingers crossed that is the end of things and you can get back to living your life again with your lovely pet dog.

Sending best wishes

Lyn

x

Thankyou to everyone for sharing your stories wish all the luck in the world, I think my problem mainly is coping with body changes, every friend I had walked.

Maybe the sooner I realise I’m never gonna be me again the better xx