Called back in to see gyno??

Hi Seffie 

Sorry, I don’t have the relevant experience you need, but I can appreciate why you’re anxious.

Can you go in tomorrow? I would if you can manage to do this. When I was diagnosed, I just had one consultant, and to be honest I paid no attention at the time to which “title” he had. Turns out he wasn’t a gynae oncologist, but I didn’t know that at the time-he was simply, to me, a consultant who would explain what would happen next for me with my treatment. 

In all the time I’ve dealt with cervical cancer since my original diagnosis in 2018, I haven’t had different teams-I’ve had one consultant to deal with me at each stage of the process, so I don’t think there is necessarily anything to read into this.

I hope you are able to go to your appointment  and find out what’s next.

Sarah xx

Thanks Sarah, i am going in to see him tomorrow x i spoke to a macm nurse and she said it’ll probably just be to give you your results and tell you what the MDT decided re treatment plan and that they have timescales that they have to stick to which is why it seems quick plus if its a hysterectomy then the normal gyno would do this not an oncology gyno so i think maybe i dont need to panic as its just him giving me the info rather than the team, its just that they gave us the impression that the next step would be to meet with the team which is why i’m confused x thank you x

I’m sure the nurse is correct Seffie  but we are hyper alert to everything. I’ve never “met the team” in my 6 years since my diagnosis, and usually in my experience, whoever you see is giving you the next steps. For me, that was all that I needed to know, regardless of the title of the person giving the news.

Please don’t overthink it, and let us know how you get on. 

Sarah xx

Thanks Sarah, its helpful to hear your experience x they definitely said we would be seeing a different team from the bigger hospital but it doesnt really matter, i just need to know results and treatment plan regardless, i’m anxious about the stage again tho as i know it could be higher x its just one thing after another and this past month of waiting to hear results etc has wrecked me x thank you x

ok so i saw my gyno today-he said ‘i wanted to see you urgently-good news the mri showed no sign of any cancer, everything was clear so i just want to fo a 2nd LLETZ to be sure’ i was really shocked as the least i was expecting for 1b1 was a rad hysto but he said we’ll do the LLETZ then see you in. 6 months for test of cure x obviously i was over the moon as so worried about it being a higher stage and i was anxious about having major surgery and/or chemo/radiation x but of course now i’m 2nd guessing him because on all the cc forums i’m on it seems like everyone who was 1b1 had at least a rh so now i’m worrying about that x i will speak to someone but i dont know who, maybe the sister linked to the gyno? i was feeling so relieved about everything but now doubt is creeping in x in one of the fb groups i’m in someone else had simikar treatment for 1b1 and everyone piled in with how she needed to get snother opinion and thats not the right treatment etc so i dont want to ask there as i cant handle that x i would appreciate any advice but know i need to contact the hospital again

Hi Seffie 

It maybe that the LLETZ you had removed the cancer completely-that’s certainly possible. Remember he “thought” it was stage 1b1, which would have likely meant the rad hyst, and maybe, but not certainly, some chemoradiation. But he was only taking an educated guess at 1b1, and that hasn’t been confirmed by the mri.

However, it’s possible for cells to remain and not be seen on an mri scan-it cannot pick up anything tiny, so I can see why you are still concerned. It can put extra doubt in your mind too, reading other forums where people are giving their experiences where they had a definite diagnosis of 1b1.

When are you getting your next LLETZ? Whatever is removed from that will be sent for analysis again in the lab and should pick up any cancer cells if there are any.

I’d agree with your thoughts on talking this through with someone as you’re clearly not reassured yet. Maybe keep off the forums you’re on for a couple of days if it’s increasing your worry-just till you chat again with the gynae staff. 

Sarah xx

thanks Sarah, thats helpful x he did the 2nd LLETZ today so will wait to hear what that comes back as x he staged it originally as 1b1 from the 1st LLETZ biopsy x i had the mri which i was told would be reviewed by the MDT so i think the trestment advice must have come from them? i know online there are research papers about more conservative mgmt if 1A to 1B so maybe the advice is changing x he did talk about the option of a simple hysterectomy in the future but he didnt think it was necessary now x they are the experts but its difficult not to question the decision, i think if i knew the advice was from the MDT i woukd feel better x i’ll maybe rinfg the nurse tomorrow just for a chat x i appreciate you replying to me so late at night! 

Don’t worry-I tend to stay up late! 

What I can tell you from my experience is that decisions are not made by a single professional in isolation-all results for scans and biopsies go to the mdt for discussion, and a decision is made after collective discussion there by the different staff involved. 

I’m not sure how much treatment protocols may have changed since my diagnosis in 2018-for example, in those days the treatment would normally have been radical hysterectomy rather than simple- but I tend not to read research papers as my own situation was so different to yours. However, it’s worth having a chat to the nurse tomorrow if you can. Sorry, I didn’t realise you’d had another LLETZ today-hope you’re feeling ok after it. 

Sarah xx

Thats ok, you dont need to apologise!! yeah i wasnt expecting it but it was fine x i think i’ll call the nurse tomorrow and tell her my concerns, it was such a shock today and i didnt really know what to say, i’ll get a copy of the letter he sends to my gp but i def need to get some reassurance re this x i rang the macm helpline ystrday about the follow up appt and she said you have to rememver everyones cancer diagnosis is very individual, its def not a one size fits all etc x anyway thanks Sarah, you do such a fantastic job on here xx

The MacMillan nurse is spot on-everyone is different, but it can be difficult when you’re worried and you read all sorts of different stories from others.

I didn’t join forums, not even this one, until I had been through all my treatment and surgery, and I'm only in the Macmillan forum-not any other cervical cancer groups anywhere, except a support group I run myself for my type of surgery.

Hope you get on well ringing the nurse and get some reassurance.

Sarah xx