New diagnosis rare cancer

Hi there
I have recently been diagnosed with gastric type adenocarcinoma of the cervix stage 1b1. I have been told this is a rare cancer which is aggressive in nature. I have already undergone a total abdominal hysterectomy for suspected ovarian cancer (which turned out to be benign) and the cervical cancer was found incidentally. I had my first oncology appointment yesterday and I was advised to have chemoradiotherapy which I have declined as I really cannot face going through chemo. I am considering external radiotherapy but need a staging scan first?
Has anyone else been diagnosed with this type of cancer? I am so stressed about the whole treatment suggested. Any positive thoughts on this? I’m really struggling.

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Hi Suzi2

I don’t have experience of your type of cancer; mine was the most common squamous cell type. However my treatment was similar to what has been advised for you: RH followed by chemo-radiotherapy (6x cisplastin. 25x external radio, 2x brachy).

I really didn’t like the thought of the chemo but it’s a relatively minor part of the treatment and its role is to make the cancer more sensitive to the radiotherapy. Without the chemo you’ll probably be advised to have more sessions of radio.

I won’t lie, the cisplatin made me feel nauseous but the prescribed anti-emetics were effective and I was never actually sick. It doesn’t make you lose hair. I remember being informed that tinnitus and peripheral neuropathy were risks but I didn’t get either. Also it depresses your immune system for a while and you have to be vigilant for signs of infection but I get the impression that it doesn’t happen often Maybe I was especially lucky in terms of side effects from the chemo?. But I would suggest it’s worth trying; you can always decline further sessions if you in the light of experience you feel it’s really not for you.

x

Hi there @Suzi2

So sorry to hear about your diagnosis. I have stage 3c1 cc and had a hysterectomy in feb where they discovered lymph node involvement. My treatment is 5 cisplatin chemos and 33 radiotherapy sessions. I have completed 4 chemos already and 18 radio. Chemo for me has been a walk in the park. Very little side effects, the odd bit of nausea but the tablets you get just stop that. Its my most relaxing day during the whole treatment process. I would advise having a good chat with your team about how cisplatin helps boost the radiotherapy treatment. Radiotherapy for me is definitely the harder of the two. Feel free to ask any questions xx

Hi , did you lose your hair with the chemo? That is one of the biggest things for me, just something I can’t handle. I have been offered 25 sessions of external radiotherapy over 5 weeks as I have declined chemotherapy. They’re giving me this weekend to make a decision. No treatment is another option and they will just keep a close eye on me.
All I really want to do is run away xx

I didn’t lose any hair with the chemo.

x

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Hi @Suzi2

Theres no hair loss with cisplatin chemo thankfully. Honestly you may get no side effects like me. I have my final chemo on Thursday. You wont even notice getting the chemo whilst getting radiotherapy which i find much harder but very manageable. If the hair loss issue is your only worry then please reconsider the chemo, its boosts the radiation treatment with studies showing by up to 20-30%. Xx

I had a radical hysterectomy for the same in September. The tumor board agreed on no adjuvant therapy but that was due to clear lymph nodes and margins there is a gas Facebook group with about 60 of us.

From what I’ve read immunotherapy has been successful for several

Losing your hair or losing your life? I’m sorry but with the mental stress you are under, i’m not sure you are thinking clearly. I can assure you it will be worth getting chemo. Hair grows back in. Fantastic wigs out there too. My advice would be to take everything the doctors want you to get. x

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In case you haven’t seen the announcement on 23/5/24, Jo’s cervical cancer trust, including the forum, is closing with immediate effect on 23 May 2024.

There’s a petition to keep it open. Please sign and share the petition with everyone you can.

https://www.change.org/p/save-jo-s-cervical-cancer-trust-charity-from-closure?source_location=tag_

A forum member has set up a Reddit so we can keep in touch and still ask questions and share information.

https://www.reddit.com/r/CervicalSupport

There’s also a Facebook page set up but that won’t be anonymous which was this good thing about this forum.

https://www.facebook.com/profile.php?id=61559971923768

It’s unbelievable that the trustees allowed the charity to get into such financial difficulties that they are making a “formal appointment of liquidators” to quote from the post on jostrust.org.uk and have shut the charity down with no notice.

I’ve found the forum invaluable. Where else can we go for the kind of information and support that we find here?

What will happen to all the past posts that still provide users with information and comfort? Will all that be lost?

I’ve posted to X and LinkedIn. Most people on there just seem to be saying “oh I’m so sad it’s closing”. We need to fight for the forum to be hosted by another charity. Surely that wouldn’t cost too much and there could be a fundraising campaign to pay for it?

Can everyone who reads this please post in socials too. We might find a wealthy charity or individual who might be able to help? :pray::heart:

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