Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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How could they miss a 7cm pelvic mass? I had 2 DVTs in the same leg in February 2020 right before the first lockdown. The nurse I saw said it was 'usually due to a malignancy' but as my bloods were normal (apart from the clotting obviously) I was put into the consultant's telephone clinic in the May. She decided against a CT scan due to the risk of catching Covid and supported by my lack of any symptoms of anything concerning and my reassuring bloods. I spoke to her again in the August and she said my red count had increased to unacceptable levels and had been on the borderline of normal back in February. She wanted a CT to check my liver and spleen as she suspected a blood cancer. I had the CT in September which showed my liver and spleen as normal but picked up the tumour on my ovary. I was then referred to Gynaecology and by the time they had done the biopsy, got a second opinion on it, and much faffing around, I was finally diagnosed in December. I started chemo in January 2021, nearly a year from when I first presented with the DVTs. Had it not been for Covid, my treatment would have started sooner and it's hard not to dwell on this. I do feel for you with the worry of the delay, I know how unfair it feels.

My almost 6kg mass/cyst was missed during a well woman check up though my fibroids were found. It was missed despite having a vaginal and an abdominal ultrasound. A week later when I went to the main hospital to sort out a hysterectomy I told the Dr I had about 5 fibroids. She was a classmate of my daughters and after excusing herself she then came back a few mins later with the Consultant. I was asked how big the largest fibroid was and told her it was the size of a lemon. And that was when she said - and what about the watermelon? I’ve never forgotten it and I can laugh about it now but I never have found out why 2 gyne registrars in my local polyclinic missed it.

Had it not been for Covid, my treatment would have started sooner and it's hard not to dwell on this

Yes. Bloody Covid. I had two well women check ups cancelled and when I went to the polyclinic to ask why the second one hadn’t been rescheduled I was told - oh but your appt is tomorrow. By then a year had gone by from the first cancellation and I would have most definitely been benign if the cyst had been spotted when smaller even 6 months earlier.

Had it not been for Covid, my treatment would have started sooner and it's hard not to dwell on this

I feel my cancer started with the stress of losing half of my work and being excluded from financial support as a lone parent. I probably would have gone to the GP with weird periods as well if it hadn’t been so difficult to get an appointment and with the narrative that irregular bleeding is normal in perimenopause. It took six months then due to various failings between me going and getting any treatment.

There’s this, we should tell our stories https://covid19.public-inquiry.uk/every-story-matters/

@PollyThePixie How the heck was that missed?!

I was actually investigated for GI cancer first, back last Nov/Dec and I really thought my GP was being overzealous then but he clearly had a hunch something was amiss. I can't fault any one of the hcps that's been involved, they have all been great. My symptoms have all been so unspecific.

Sorry to all of you who experienced delays due to covid, that really sucks.

@MyNamesGaryAndImAddictedToChips
The trouble is diagnoses like ovarian cancer (do you have something like that?) have been based on vague symptoms for years. I graduated in 1991, and then we were taught ovarian ca was missed because it was vague in its presentation

Surely by 2023 - vague symptoms in a woman/ GI symptoms in a woman that aren’t settling on usual treatment (me) - should be a big red flag for immediate investigation

Its just irritating that women still get dismissed with vague symptoms- when the one thing we know is that this is how some of female specific cancers present.

@RedRosesPinkLilies I don't know yet, I still don't have an official diagnosis. I don't know if I have cancer or not.

It makes me so angry to hear about all your delays and misdiagnoses. Sending strength. And luck: we are still in Denmark and had an amazing evening stroll at the northernmost point of Jutland where the North Sea meets the Baltic. You can see the currents meeting and it’s supposed to bring good luck to stand with one foot in either sea. So I’m sharing my good luck (and slightly hairy ankles) with you all.

Ooh @dotty2 that is such a special spot! I would love to sail over there. I am thinking maybe a Scandinavian mini break is overdue.

My cancers were found by me, despite normal mammograms previously, and I was persistent and got diagnosed with BC quickly both times and started chemo within 3 weeks for the first and 2 weeks for the second. I have discussed it with the radiologists and they think I am better at picking up problems than they are so no extra scans in future just my vigilance. It’s a bit strange having to diagnose yourself but I was a GP for thirty years so I do know what I’m doing. I’ve got my BC clinic appointment in 3 weeks for a check on my shoulder but hopefully that is just impingement not a bone metastasis. I am not going to think about it until I need to. I have got my French adventure to look forward to first. So far my feet are holding out well against Hand Foot Syndrome with extra vitamin B5 and Voltarol gel.

Loving the dog pictures! My dog has really kept me going through all of this. He’s called Bertie.

Three weeks post masectomy and I now have fluid on the left side. Right drain finally came out yesterday. So more ultrasounds and appointments.

Not loving the stories of length of time to diagnose, things missed and misdiagnosis.
Lets hope things get better in that area.

Hey all, sorry to bring the tone down but I can add a photo of my dog if that helps! I had surgery a couple of weeks ago to remove a tricky tumour it's been a bitch to heal but it's finally behaving itself.. until now!

I went for a bath and the area (basically under my boob) has totally opened up, it absolutely stinks and has a nice amount of green discharge coming out (lovely).

My issue is; my dr is closed tomorrow for a staff members funeral, my cns is on annual leave, my onc and surgeons secretaries don't work Friday. Do I call the chemo hotline in the morning? It smells so bad I don't know if I should just stay in the bath away from my husband because it's making me retch and I'm a dr and It's my body 🤦‍♀️.

I can't call 111 now because I decided to have a drink earlier so I couldn't drive to the out of hours even if I wanted to.

Sorry forgot the dog. Big One is 15 baby one is now 4. They really are the light of my life.

My diagnosis story is a hard one. I had a sore throat for months and they said it was just reflux but it wouldn't shift, so had a camera up the nose and then down. On my throat just above my vocal cords was a 2mm tumour that was biopsied and found to be melanoma. Who knew you could get that inside your body!

Had surgery, then treatment of single immunotherapy in 2018, then ned. Monitored for 2 years. Felt unwell late 2021 but wasn't high priority because of Covid, had 2 scans cancelled because of it, finally had a scan November 2022 and was staged at stage 4 with numerous rumours everywhere basically. Started targeted therapy which failed, then a trial of 2 immunotherapies, had progression whilst on that therapy. Told to plan for the end, got in touch with a hospice about end of life care. Then got selected for a trial, a bit more progression on that and was deemed unresectable but I asked to stay on the trial as it made me feel better, scan 4 weeks later showed all tumours except lung one had disappeared, had surgery for the lung one, scan 2 weeks ago show ned.

Oncologist is so happy with my reaction to the trial. I can stay on this drug forever and so far in 10 years the people who it's worked for have all stayed alive so she said if I'm still Ned in 5 years they will re asses my staging because melanoma can be 'cured' at stage 4 now with immunotherapy if you have a complete response.

I'm exhausted. It's insane to think at the beginning of this year I was planning my funeral, now I'm NED. I think I might need some therapy!

@TopOfTheCliff your alpaca yoga sounds like a hoot!

Forgot to clarify the progression I had on the trial was thought to be pseudo progression where the tumours do get bigger initially but it's actually due to the immune system attacking them not them growing. It's weird!

@CoachBeardsJane

Wow that’s a real story. So glad the trial has helped you. It must be very difficult emotionally.
I’ve had a tricky path myself so I can empathise.

I think you need to get yourself to the emergency department at your local hospital. Sounds like you need some antiobiotics and the wound looked at and cleaned and a referral.

I’ve had fluid drained this morning as it’s been collecting in there. It was quite straightforward but still stressful.

Get it looked at! Love the dog pictures, they are such beautiful souls. Best wishes

Get your husband to drive or a taxi!

Good that you were persistent @CoachBeardsJane about the immunotherapy and that you’re observant @TopOfTheCliff. I think I knew something was wrong with my body before I was diagnosed, I was having all sorts of weird but non-specific symptoms but I thought neurological, as that’s what’s in our family, no cancer at all, it was just written off as psychological though. And I also raised issues about my periods not syncing with HRT, but no one was particularly bothered about that either. It feels like you have to be very persistent, perhaps particularly as a menopausal woman. It’s horrible when you think something’s wrong but no one is taking you seriously.

I only went to the gp because one day a month (ovulation day), I found it really tricky to pee. And that had been happening for about 9 months! The consultant asked how I hadn't noticed any bloating (ovarian tumour is 16cm!) and I just said I've got 2 kids and like carbs 🤦🏼‍♀️ I'm not thin at all, on the higher end of normal bmi, and I'm just used to my waist fluctuating in size.

I had a melanoma removed during covid, the wound got infected but it was March/April 2020 so the gp wouldn't see me. I sent a photo and was given antibiotics I think but I couldn't wear a bra for 6 months it was so painful! Not that it mattered, I barely went anywhere.

@MyNamesGaryAndImAddictedToChips thank you for the peppermint oil info.

@RedRosesPinkLilies Ah yes, I've seen you write that before. Sorry, hard to keep track! The consultant says that they'll remove the whole tumour, ovary, tube and the lining of something (can't remember what!) so if it is cancer, he expects that it will be a small part within what he'll have already removed.

Forgot to say, @CoachBeardsJane you have been through the mill! I'd get that wound looked at anyway you can today.

These diagnosis stories are scary! So glad lots of you have spotted things that might have otherwise been missed. I managed to get diagnosed with no symptoms as I have Crohn’s disease anyway and asked for a routine colonoscopy as it had been a few years. Six weeks later got a call saying I needed to come in urgently and it turned out there was a lovely anal cancer tumour growing down there. I am at home recovering from APR surgery now and hoping hoping hoping it has worked.

I’m a terrible dog mum but here is my special boy Norman, he weighs about 5 stone and I love him!

Sorry terrible dog mum as I have no good recent pictures! I am a great dog mum otherwise, realise that sounded like I am horrible to her 😞

Hope you're okay @CoachBeardsJane you can always at least ring 111 whether you're sober or not!! (You probably are by now 🤣) But I agree with @FairyWren7 get yourself to A&E as a first option.

Loving the dog pics, but some of these diagnosis stories are terrifying!

My late husband was under medical investigation when COVID started. It took a further six months to diagnosis by which time he weighed less than six stone and couldn't speak clearly or eat anything solid so had deteriorated very rapidly. The GPs kept treating him for thrush. We turned up at a and e several times just to get someone to see him face to face to no avail.

My diagnosis story couldn't have been more different - rang GP after bleeding a few times post sex, appointment the next day, referral under TWW, pretty much diagnosed within that, later confirmed with biopsies and scans, treatment started within guidelines etc.

@CoachBeardJane gosh I am full of admiration for you. The mental toll of something like that must be huge. What an absolute headfuck!

Currently in limbo in the period between finishing treatment and getting back to normal and waiting for the scan to see if they've got it all. Scan should be late sept/early Oct. Most days I'm fine but some days I get really down about it. All signs looking positive but of course every ache and niggle I'm putting it down to the cancer.

Also have to have an MRI as my liver had some lesions on it. It didn't light up on the pet scan so they just kind of put it to one side whilst I cracked on with treatment and now treatment is over I'm worrying about that. Gah to go back to the halcyon days of last year where I just took my health for granted!

Some of these stories are bloody scary! I rang for an appointment with what I now know was ascites but I thought it was bloating because I'd had some sort of tummy bug that didn't settle. I was given lansaprozole & told to ring back in 2 weeks. 2nd appointment was a phone call with a GP Associate who wanted to actually see me & arranged bloods to be taken. Still took the whole half term up to the Easter hols to actually be taken in to be drained & told it was in fact BC, after several appointments being wrongly booked/not telling me they were booked. The gynae consultant was ready to send me home when the ultrasound found nothing, so I'd have been waiting for the multi-dept meeting to see what came next if it hadn't been for the Macmillan nurse basically telling the consultant that "no, we need to drain that tonight or tomorrow & investigate now".

Anyway, chemo 13/18 today. I fancy a "day off"...I suggested one last week too but dd1 told me I'm not allowed to skip one <sigh>. Much rather be sat under the parasol enjoying the sunshine but there we go. Hopefully I won't feel like I'm being told off for my tooth again even though it's all been discussed with my consultant and registrar!

I've googled the drugs they want to give me next - hair thinning/loss, and weight gain are listed as possible side effects. Marvellous...I want hair to bejewel for Taylor Swift next year & do not want to have to buy new clothes. I like what I have & am comfortable in them 😢

@CoachBeardsJane I think I'd be heading to A&E, maybe a call to the chemo number as a "heads up, I'm doing this"?