Hello all
heres my story, be grateful to hear what you think.
i was originally diagnosed with serous endometrial cancer. Serous is an extremely aggressive cancer so standard first line treatment is a full hysterectomy, including omentum.
Scans showed one of my ovaries possibly had cancer also, he said it’s likely uterine cancer spread up as overian doesn’t spread down.
i had a huge operation, cut chest to pubic with 90 staples!
3 weeks later I go in for results and I was told there was cancer found in everything they removed except one ovary.
I sat there thinking I had stage 4 serous, I went numb, I thought I was going faint, then I thought I was going throw up. All I could think was 2 years if lucky.
he then said we’ve changed it from endometrial to cervical. And it’s mucninous adenocarcinoma, the standard type.
uh?? I had all my smears??? It never showed up!! My tumour was in the lower uterine section so wasn’t being picked up on smear.
but omg could it really be I didn’t have serous anymore? That was a miracle for me.
so… I showed up to radiation oncology and he says, forget stage 4. You by accident have had an amazing operation and there is no cancer in your body.
had we known cervical from day one you would not have had an operation.
so I’ve started treatment Ned.
I’ve started in Keytruda, avasin, carbo, paxel. For 8 sessions of which I’m half way through. I will then have chemoradiation and continue on Keytruda and avastin for 2 years.
i feel confident im throwing absolutely everything at it right now, plus i feel stem cells were removed in the surgery.
so im praying i survive, i have two amzing children who arnt old enough to lose me x
Hi Pleco and welcome to our group.
That is quite a story, and not one I have heard before in the group.
I can empathise with how shocked you must have been firstly with the diagnosis being serous endrometrial cancer, especially having to go through the surgery you underwent, and then for the diagnosis to change so drastically. May I ask if you are in the UK?
I didn’t understand the classification of mucinous adenocarcinoma being called the “standard type”. I had cervical adenocarcinoma myself at my original diagnosis, but it wasn’t mucinous adenocarcinoma, which is a rare subtype of adenocarcinoma so would not, in my understanding, be called standard.
Most cervical cancers are squamous cell carcinoma, with a lower proportion of cases being adenocarcinomas. When I was diagnosed, which was 6 years ago, my gynaecologist told me that adenocarcinoma made up about 15% of newly diagnosed cancer cases, with 85% of cases being squamous cell-I don’t know if these figures have changed significantly over the years, but the treatment is typically the same. Chemo and/or concurrent chemoradiation, depending on stage/lymphnode involvement.
Mucinous adenocarcinoma makes up a small percentage of those adenocarcinoma cases. The adenocarcinoma I had was caused by the hpv virus, as are the majority (though not all) cervical cancers. However, mucinous adenocarcinoma is not caused by the virus so it is a different type.
Adenocarcinoma can be missed on smears due to it starting higher up in the cervical canal, and the mucinous subtype can also be missed as it seems happened in your case. I wasn’t able to have a hysterectomy at stage 2b, so if you had been diagnosed with a stage 2b or above cervical cancer, surgery would not have been an option, at least not in the UK.
You have a very heavy regime of treatment to undergo now, and one where we have limited experience in the group. I will tag my friend Aquabambi who has small cell cervical cancer, which is another rare type of cervical cancer. She is currently undergoing treatment, so could perhaps help in sharing her experience so far.
Have you had much discussion with your consultant/oncologist about your particular cancer type and your treatment? I would question why mucinous has been described as the standard type and maybe look for some explanation of that and how this sub type might be expected to react to treatment.
I don’t know anything about stem cell removal in surgery, so I wonder if that aspect has been fully discussed or explained to you? I had extensive surgery myself when my cancer recurred, but have not heard about stem cell removal before.
I can completely understand why you are throwing everything at your cancer, especially with having young children. How are you coping with it so far? It’s a lot to be facing.
Sarah xx
Hi SarahH21 Thanks for the tag - how are you doing? X
Hi Pleco
So sorry to read of your journey so far, it’s certainly been very complicated and I can only imagine how stressful it’s been for you, particularly not having any clarity for so long.
I have a feeling we may be on another group together as almost this exact thing has happened to another lady on there - if it’s not you, apologies, and I can try and connect you two if you both wish.
Do hope that you’re doing ok on the cocktail? I’m on the same one, but just had my 2nd infusion last week.
Sending hugs and hope you have a restful day.
J x
It’s such a unique case, I thought it may have been!
I don’t use my full name here as it’s public, but you may know if it’s me - massive blood clot at end of port = 6 week hospital stay, small cell CC, just started chemo cocktail after quick spread - also a slightly unusual case with lots of “rare occurances!” (Just give me “normal”) lol
J x
Thanks for clarifying this Pleco
You said in your original post you had been diagnosed with mucinous adenocarcinoma, so I based my response on that. I’m glad to read that is not the case.
Sarah xx
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