This merry-go-round never stops. Not a thyroid ... - Thyroid UK

Thyroid UK

140,893 members166,005 posts

This merry-go-round never stops. Not a thyroid rant.

Jamima profile image
46 Replies

I was referred for a skin biopsy on 19/7/24 and told it didn’t look worrying so the results might take some time. Ok, I thought, they know best. I called the consultant’s secretary last Thursday as the lesion is now much worse than when they biopsied it. She wasn’t there naturally but returned my call saying a letter had just been signed and that I had a squamous cell carcinoma and would be prescribed cream to treat it. And that was it, nothing else, no here’s what to expect/what to do in future, just, you’ve got skin cancer, here’s some cream. Is this what the NHS is now? I know they’re struggling, but this seems beyond scant when there’s ‘cancer’ in the diagnosis.

Written by
Jamima profile image
Jamima
To view profiles and participate in discussions please or .
Read more about...
46 Replies
bantam12 profile image
bantam12

My husband had the same a couple of times and yes he was given the cream and that was that, I think they see it as easily treated, job done. By the way after the treatment he was clear.

Jamima profile image
Jamima in reply tobantam12

Thank you bantam12, that’s way more info than I’ve received so far. Obviously, it can be googled, but it’s really worrying and I’d expect some sort of medic to talk it through.

J972 profile image
J972

That’s completely unacceptable. But sadly all too common it would seem. I’m sorry. Hopefully it’ll respond super well to treatment. Sending best wishes xx

Jamima profile image
Jamima in reply toJ972

Than you J972, according to all the googling it does respond well but it’s still a bit of a shock, you’d expect some sort of back-up. Just wanted a rant.

J972 profile image
J972 in reply toJamima

Of course it is, noone wants to hear that. It’s a sad state of affairs.

Thank goodness we can Google such things.

Jamima profile image
Jamima in reply toJ972

Yes, can’t imagine how worried you’d be without google.

HowNowWhatNow profile image
HowNowWhatNow in reply toJamima

or, depending on the diagnosis, with it!

Jamima profile image
Jamima in reply toHowNowWhatNow

Yes, when a chat with the specialist you saw would do the job.

Regenallotment profile image
RegenallotmentAmbassador

Thanks for sharing this, it will help me remain rational when I get my next dismissive NHS interaction. Had 3 lesions photographed with a dermascope this week and a pelvic ultrasound deemed urgent by women’s health nurse that radiographer said nothing unusual….and already feel like I’m a ‘worried well’ time waster.

If I’d had this message I’d have been alarmed 😧 well done for chasing it 🌱

Jamima profile image
Jamima in reply toRegenallotment

I know what you mean Regenallotment and my suspicions of the accuracy and attention to detail in the medical community were raised when I had a rather severe stomach bug last year, it was pretty nasty and put me out of action for around a week. I eventually contacted my GP who do everything in their power to avoid actually seeing the GP - anyway they arranged some tests and again I had to chase results, receptionist said all negative, GP called a couple of weeks later to apologise and said the receptionist got it wrong and the tests were positive. How can this happen? Did a GP tell the receptionist? Was the GP wrong? How can you get neg from pos? What if I’d been elderly and particularly frail? I’m afraid all trust has gone.

If the radiographer said all ok, I’d trust her, women’s health nurses panic if there’s any unusual bleeding. Good luck with the lesions, I hope you have better care than I’ve had.

HowNowWhatNow profile image
HowNowWhatNow in reply toJamima

A cynic might note that the GP called you to say there had been a mix-up. Nothing put in writing about it.

Jamima profile image
Jamima in reply toHowNowWhatNow

That didn’t elude me. I’ve put it in writing to the GMC though. The GP was fudging big time when I asked how this might happen. It’s not the first problem I’ve had with that practice, there have been countless, I genuinely believe they will/may already have caused harm.

HowNowWhatNow profile image
HowNowWhatNow in reply toJamima

well done

janeroar profile image
janeroar

Staggering you’re not being given any information. my sister had skin cancer twice on her chest and was given that cream. It was very effective. It seeks out cancerous cells (it’s a form of chemotherapy ) so the lesion size might be a lot bigger than it appears and you can get a large wound until it heals. Where is your skin cancer? She’s had it return on her nose and ear so she is going to get an opinion from a consultant dermatologist who has expertise in skin cancer. If my sisters experience is anything to go by, get a second opinion if you can afford it and line up some support and more info. Reading your post feels like the last straw for me re the NHS - it really is not fit for purpose.

Jamima profile image
Jamima in reply tojaneroar

Thank you janeroar - for all the reasons you’ve stated, I’m getting a second opinion. It’s just staggering that they’re so flippant about a diagnosis they know will worry people.

Jamima profile image
Jamima in reply tojaneroar

The lesion is on my upper arm but there might be more, the consultant didn’t have the light they use to check, so went off to find one, came back flustered and did a really quick scan but I’d like to be checked again.

janeroar profile image
janeroar in reply toJamima

Wise to do that. You shouldn’t have to be getting advice, they should be better at informing you. I wonder whether it’s worth writing to your practice manager to say that you’re concerned that you’ve been given no information and you might have other lesions. You could say you want a dermatologist referral.

Jamima profile image
Jamima in reply tojaneroar

Thank you janeroar- I’ve just made an appointment at my new practice. I’m done with the old ira rice, their attitude and negligence is partially responsible for where I am today so I’ve reported them to GMC. I cannot believe the difference in approach with the new practice so I’ll mention to my new GP that I’m concerned.

Cornwaller profile image
Cornwaller

People who work in the NHS think they are kind, they really believe it. The reality is that the NHS is institutionally cruel. Many of the staff are lazy and are far more interested in robotically carrying out their alloted task than actually helping people.

A friend waited six weeks for a follow up test after a cancer operation. The nurse said it could take up to six weeks, the consultant said a couple of weeks. Every day for weeks she checked the post.

What in heavens name were they doing, or not doing, with the scan. At this point the idiot defenders will say they're short staffed. But here's the thing, if they do 50 scans a day then they have to assess 50 scans a day. If they do less then the wait becomes infinite so what they are doing is 50 scans a day, leaving them in a pile for six weeks then assessing them at the rate of 50 a day. So why not get caught up by doing a few weekend shifts and then turn them round in a week. Or like our vet, do the scan, assessment and communication all on the same day?

Why not?

The computer says no, we'll drift along and inflict endless cruelty on the Britsh public who pays for the entire mess.

To be fair sometimes it works well- but way to often it does not.

Jamima profile image
Jamima in reply toCornwaller

Can’t disagree with anything you’ve said there.

janeroar profile image
janeroar in reply toCornwaller

Absolutely agree with everything you say Cornwaller. I’m in Australia at the moment on holiday and another family member has had to get urgent medical treatment. The medical system (called Medicare) is very impressive. No wonder people want to live here.

Ellie-Louise profile image
Ellie-Louise

That is completely different treatment to what I received.

In December of ‘23 I was diagnosed with a squamous cell on the top of my head. After seeing the dermatologist at the hospital I was given an appointment for surgery to remove it towards the end of February this year. The biopsy was taken at the same time. A few weeks later the results came back saying there had been no sign of cancer, the dermatologist told me he thought it must have been an immune reaction to something. Later on thinking back I had felt something like a sting or bite one day last summer. Originally I thought it was the sun catching me when my parasol was blown by the breeze.

Anyway it wouldn’t heal, they had taken quite a lot out so I needed skin to grow back as well as deep healing. I saw him a few times more this year, and have another appointment at the end of November. I really wish it would heal completely because it does get you down.

I wish now that a biopsy had been taken before the surgery had taken place.

Jamima profile image
Jamima in reply toEllie-Louise

Thank you Ellie-Louise - a very different approach. I’m seeking a second opinion as I genuinely don’t trust medics anymore.

Ellie-Louise profile image
Ellie-Louise in reply toJamima

What part of the country are you in? Wondering if that makes a difference.

Jamima profile image
Jamima in reply toEllie-Louise

Scotland. The SNHS has challenges, there’s no doubt about that.

Ellie-Louise profile image
Ellie-Louise in reply toJamima

Oh right. I’m at the other end of Britain, South coast. They’ve always been pretty good down here.

Hope it goes well for you with your next one. x

Jamima profile image
Jamima in reply toEllie-Louise

Thank you.

janeroar profile image
janeroar in reply toEllie-Louise

You could consider medical grade honey to help your scalp wound. There’s been a lot to success using it for persistent wounds that don’t heal. Clinical paper here - pmc.ncbi.nlm.nih.gov/articl...

Lots of stuff available to buy online. Eg -medicaldressings.co.uk/acti...

Ellie-Louise profile image
Ellie-Louise in reply tojaneroar

Thanks but I have medical grade and have tried that. It didn’t really do much apart from stick my hair together.

janeroar profile image
janeroar in reply toEllie-Louise

Sorry to hear that. Hopefully others will come along with ideas to help

MaggieSylvie profile image
MaggieSylvie

I've had about seven non-squamous basal cell carcinomas. Most few were excised with scalpel, and the rest were treated with cream and a sort of burning procedure. There might have been one or two that were treated with just cream on my back. I saw a dermatologist each time. There was no GP saying "here's a prescription for cream"!

Jamima profile image
Jamima in reply toMaggieSylvie

Many thanks Maggie - my gp didn’t prescribe although they did prescribe a high strength HC cream after seeing a picture of the lesion - they avoid face to face at all costs. HC didn’t work so they referred me to dermatology.

MaggieSylvie profile image
MaggieSylvie in reply toJamima

Should have done that in the first place! Relying on pictures - nah!

Jamima profile image
Jamima in reply toMaggieSylvie

I know, I’ve lodged a complaint with GMC. This practice is frightening.

tattybogle profile image
tattybogle

Sorry to hear you are having worries with skin cancer Jamima, i had a BasalCellCarcinoma cut out of my lower eyelid 12 wks ago, consultants told me what they suspected at initial appointments , what sort of cancer it looked like. how it behaves / spreads etc ,ie "BCC doesn't usually metastasise to other parts of the body , but if left it will invade the local tissues and could mean loosing your eyeball" ... had dermatology appt within a few wks ,they referred it to occuloplastics .... it took about a year from first showing GP to finally having surgery (although some of that delay was me not wanting anyone near my eyeball with a scalpel while we weren't sure what it was ~ it's problematic to take biopsies from that location on eyelid)..... it was confirmed as a BCC once it was removed, so i'm glad i let them remove it , but unfortunately the surgical repair has developed several issues and might need further surgery to try and rectify them , plus they are concerned that the reason it's behaving so oddly could be ongoing BCC growth , so i have to keep going in to see them approx every 6 wks ...indefinintely.

they have been very supportive with the hand holding / information side of things... but i think that is because they sensed i was likely to run away and not have it dealt with ..... i hope your version if this fun and games clears up with just the cream.... i wish mine was on my arm, much easier to cut it out from there if needs be.

Jamima profile image
Jamima in reply totattybogle

Thank you tattybogle, what an awful time for you, I’m so sorry. Your post has helped me put things in perspective somewhat so thank for that. As you say, the head in the sand approach is often adopted and in my case easily achieved as my gp is so difficult to approach. Just chatting with a friend this morning who has been referred for an ‘urgent’ colonoscopy, wait time: 37 weeks. In many areas, our health system is broken and some of us are now starting to realise that, you have fortunately not had that experience and I hope your care and healing continues well.

HowNowWhatNow profile image
HowNowWhatNow in reply toJamima

That’s the most terrifying thing I have read on this page. 37 weeks. How can this be so?

Jamima profile image
Jamima in reply toHowNowWhatNow

No idea, fortunately she has the means to go private.

birkie profile image
birkie

My aunt had the same thing, she used the cream but it wouldn't heal she then had a trial of honey or something like that 🤷‍♀️ but in the end she had it cut away, she's clear now and celebrates her 90th birthday in Feb 2025.

But I agree you shouldn't just be left to apply cream thinking everything is OK.. on my thyroid journey an endocrinologist told me my inflammatory bowels we due to carcinoma, I'd got out of my hospital bed ( in thyroid storm) and travelled a town over to see him as he wouldn't come to my hospital 😡

He told me that and just left me to stew in it, I had no one with me to talk to, it was just awful, upshot it was the anti thyroid medication and not cancer🥵 but I had to have a colonoscopy to prove it wasn't carcinoma ,that took over 2 weeks 😡 it's appalling how the nhs work today😡

Jamima profile image
Jamima in reply tobirkie

Dear god Birkie - that’s horrendous, I’m so sorry.

janeroar profile image
janeroar in reply tobirkie

Appalling. What a cruel tosspot. Did you ever write to him, copying in the hospital manager?

birkie profile image
birkie in reply tojaneroar

I actually had to go back to him when he received both reports..colonoscopy and uptake scan on my thyroid, he was a totally different person took me by the hand into his office😯 bit creepy I thought, but when I sat down he told me he had now received my uptake scan and he showed me it, he said it took up in both lobes.In the first meeting I told him I felt it was graves , he poo pooed it concentrating more on my bowels.

I leaned over the desk and asked him.."is it graves disease "

"Yes' but it's thyrotoxic the thyroid needs to be removed ASAP.

I then said

" can I have your wage for today because I diagnosed myself the last time I saw you"😂

Nervous laugh by him, and when I mentioned my colonosocpy showing no cancer he said he never said it was cancer just there's a chance it could be🤷‍♀️ what a cop out.😡

Unfortunately I was very ill up to surgery, taking 30mg of iodine 10mg 3 times a day 🤮 it was hell, but when my hospital doctor saw the report concerning the cancer he rang him and made a complaint...as never again to tell a patient of mine she may or may not have bowle cancer🤷‍♀️

Don't know if it made any difference, I was trying to recover from a full thyroidectomy 😣 but we on here know what endocrinologists are like😡

Jamima profile image
Jamima in reply tobirkie

Sorry is the hardest word for some in the medial profession, and yet, we'd willingly accept it. The bombastic nature on show from too many needs to stop. What a hellish way to treat people, I hope you're well now.

birkie profile image
birkie in reply toJamima

Got on to ndt, private prescription thyroid bloods doing well👍 way better than on that synthetic stuff T4 /T3 it just didn't work for me. But on the flip side I have primary hyperparathyroidism 🙈 just another little gift..😂😂😂😂

Jamima profile image
Jamima in reply tobirkie

I suppose the positive in all of this, if it can be viewed that way, is that you won't take anymore crap off anymore pompous staff members. Good luck with it all.

jillyana profile image
jillyana

My husband had radiotherapy for skin cancer on his back about 25 years ago. The area now looks raw & is irrating him. He saw a GP who said he needs a biopsy & was told there is a year to wait for one! Other than pay private, there is no alternative than to wait in the queue. It's disgusting.

Not what you're looking for?

You may also like...

Do I have a live Thyroid or not after RAI treatment

About 11 years ago I had RAI ( radioactive Iodine Treatment ...... I take 150 levothyroxine and I...

Eczema, itching, rashes - I actually found something which helped!!

Hi Everyone, For the last few months - no maybe a year I have had eczema on the palms of my hands...
sheenah profile image

concerned

Has anyone had skin probs with Hyperthyroidism? This has been on my knuckle(first finger)for...
Coulby profile image

More thyroid lab and a rant....I want to give up!

I have battled for the past 4 years after my thyroidectomy to gain some resemblance of what I was...
Batty1 profile image

Any progesterone user out there? I'm after some advice...

Not strictly a thyroid question I know. My thyroid is now well managed but I've started to get lots...
Lolalois profile image