1b1 to 3C2 - utterly heart broken

Hi everyone.

Last week I got a letter stating they believe my stage 1b1 at least but today after my MRI last week and MDT meeting today, I’ve been classed as 3C2.

My care is now being referred and I won’t know my treatment plan until at least next Monday. They are look at how much chemo apparently.

I am so heart broken. I’ve been strong up until now but after getting the news by telephone without any support I just broke and couldn’t talk. I was on my own also.

Spent the day between being numb, crying, drinking whiskey at the pub, cracking dark jokes and being strong for my small circle I’ve told.

My other half came down an hour ago and just grabbed me to hold me tight and said I cannot leave him. He’s strong but it’s good to know he’s equally terrified. We lost his mum to stage 4 stomach cancer in 2019.

I know I am not the first person to be touched in some way by cancer nor will I be the last. I am not unique in my situation so any good news stories would be very welcomed right now.

Mena x

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Hi Mena

So sorry that you find yourself in this situation, but you are not alone, and it sounds like you have a great network of people around you.

I finished treatment (25 radio, 4 chemo and 4 brachy) in January for 3C2 and had my 3 month MRI results in May which showed the 6cm tumour had gone and no activity in my lymph nodes. I have my next check up in September which will just be an internal examination.

The treatment these days is so advanced and at 3C2 they still treat to cure. Where are you based?

For me starting treatment gave me something to focus on, it gave me a bit of routine. I took 5.5 months off work from just before treatment started to after my 3 month mri results, i was fortunate to get full pay, i know some people aren’t in such a good position.

I’m still very paranoid about a recurrence but i think I’ll always be that way now sadly, and it’s perfectly normal to feel like this.

Please feel free to ask any questions about my experience, this forum has been a godsend for me for the last almost 11 months (i was diagnosed at the end of August last year but due to a number of things didn’t start treatment until December!)

Emma xx

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I got upgraded from stage 2 to 3c due to lymph node involvement in December 2022 - and today, 6 months out from treatment, I’ve been told that I’m in the clear. There’s hope. Stay strong.

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Hi @Emsypops

Thank you so much for replying. I’ve read your post several times. Does give me a lot of hope.

I am based in Birmingham and being treated at the QE. My work has been very supportive and if needed I’ll be able to take 6.5 months off at full pay.

Yesterday, the lead gynaecology from the MDT took half an hour out of her lunch to speak with me. I think they were concerned with how I was told about my staging and my reaction.

She settled my mind a lot as she said looking at the result stage 1 and 2 is really where surgery is the first option but stage 3 and 4 is Chemo/Rads.

She also said they are just numbers on a page and it more important to be healthy and have a positive mindset when doing treatment.

I am in a better place today but I am still getting my 6 counselling sessions to keep my mind healthy.

You are right about this forum! Keen such a help

Mena xx

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@Elroo thank you! So lovely to read and great to know you’ve come out the other side with positive news. Xx

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hi there,

thank you for sharing your stories. i’m 31 based in indonesia. i got diagnosed just 4 months after my marriage and just finished 25x radiotherapy, 6x chemo, and 4x brachytheraphy. 🩷 i will have my second mri check 1 month from now. what i learned from my experience is that we’re not alone. learning from fellow patience can help quite a lot in this journey. :heart_hands: even though it’s tough but positive and fun mindset are key in the recovery. hang in there. we got your back. x 🩷

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Hi @helloannisa

Thank you for sharing yours also. Your message came across strong and reading people’s positivity had been so helpful to me when I am having dark days.

I feel so much better today. Managed a full 8 hours sleep in my own bed without any unmanageable had pain.

Stay strong also :clap:

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I’ve just finished treatment for 3c1. It was intense but the side effects were manageable, chemo was the easiest bit I found. Take one day at a time x

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This happened to me in 2020 during the pandemic. I was all alone and every appointment I had to go alone. Chemo rads and Brachy. It’s all do able stay strong prepare for treatment help you body to fight and do what is right for you.

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Thank you so much @Clairefzr250 really needed to hear that.

I am feeling better each day. Got to be more patient as my MDT meeting that should have happened Friday was cancelled due to strike action.

Just want my treatment plan

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@Petal14 tor what it is worth I am so sorry that you had to face this during the pandemic. Cannot even begin to comprehend what that must have been like.

Hope you are doing better now.

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Hi lovely… firstly so sorry to hear about your diagnosis but equally wanted to give you some hope… I was diagnosed at stage 3c1 in May 2021 when my little boy was just 7 months old… 5cm tumour with pelvic lymph node spread, it was grade 3 squamous cell carcinoma so poorly differentiated, extremely aggressive and fast growing.

I had 5 weeks of chemo once per week and radiotherapy 5 days per week then 2 weeks of brachytherapy… at the end of brachy they said that there was nothing left of the cancer to see and at follow up pet scan in November 2021 I was officially Ned.

My most recent follow up was last month and they said that everything was looking extremely good and that there was barely any radiotherapy scarring left now too.

I’ve been left with mild bowel and bladder issues from radiotherapy but otherwise 2 years on I’m completely well.

Sending you so much love and healing, you can do this xxx

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Hi, Stay strong & positive.
I was diagnosed last august 1C2 then graded to 3 C2.
Had 25 radiotherapy, 5 chemo & 3 brachytherapy,finished in January 2023.supposed to do PET scan in Aug 2023.
Sadly, in March 2023, the cancer had spread to my abdomen as well.
Now, back to chemo. Just finished my 3rd
chemo last Thursday and due for PET scan next Thursday.
Hoping to see some improvement. A very tough & challenging journey! Am based in Melbourne.

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Once you have your treatment plan you will feel a bit better, it’s the not knowing and the waiting that is the worst!

I was treated in Glasgow and the staff were all amazing, remember if you feel something isn’t right then raise it with the nurse or your radiologist - I had strange pains in my lower back/side that ended up being blood clots in my lungs but I do have a family history of them.

In regards to the treatment, I didn’t suffer too many side effects, the tiredness was the worst! I did get some bowel issues from week 3 onwards but the team sorted me out with medication. Just after I finished treatment I ended up with radiation burns on my back and bum but I just used recommended creams on these and it went away after a couple of weeks.

I was totally fearing the brachy but it actually wasn’t too bad. The worst bit was the anaesthetist trying to find a vein, and he couldn’t and had to go in through the underside of my wrist both times! Getting the rods taken out was a bit uncomfortable but I had gas and air which helped. And I went back for the 2nd lot so it couldn’t have been that bad!

I do have some side effects 6 months after treatment - mostly stiff hips when I’m getting up off a chair, menopause symptoms (I’m still waiting to see a menopause specialist as GP won’t prescribe me HRT due to the blood clots) and I have some bowel issues as well but nothing that’s not manageable. Everyone’s side effects will impact them differently.

I started using the dilators a couple of weeks prior to my 6 week examination. Since then I’ve tried to use them twice a week for 10 mins, I’m still only on the 2nd smallest one but my oncologist is fine with that.

Take care and I hope you get started on treatment soon xx

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Sorry to hear you’ve had a recurrence so soon after finishing treatment - really hope the chemo is working and you get positive results at your PET scan next week.

Do you mind me asking if you had any symptoms of it spreading? I had a clear 3 month MRI and will just be getting an internal exam in September, I’m so paranoid that things will get missed since they don’t seem to do PET/MRIs unless other symptoms present but I didn’t really have any symptoms apart from a massive bleed prior to my 3C2 diagnosis! I’m in Scotland, and I’d pay for a private PET scan but it doesn’t look like they do private ones.

Wishing you all the best in your treatment, stay strong and good luck for Thursday x

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My only symptoms after the first lot of treatment in January 2023 was tummy aches and loss of appetite.
I saw my GP twice and was prescribed anti acid tablets and I also went to hospital emergency twice.
On my 2nd hospital emergency visit, they did a CT scan and discovered a bowel blockage.
Upon surgery, they found the cancer had spread to my abdomen. I ended up with a ileostomy and stoma bag now.:weary:

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I can totally empathise. You can do this. Stay positive and know that this is treatable. I went through this in 2020-21 during the height of the pandemic. I went through all my surgery and appointments alone. I went from stage 1a1 to 3C1 due to lymph node involvement. Full hysterectomy followed by 5 weeks of chemorads then 3 brachy. 3 years NED. You can get through it. :heartpulse:

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Thank you lovely. Hope you are feeling on the mend?

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@Clairey1610 thank you for sharing with me. I am in a better place. Trying to make peace that even after my treatment my current normal won’t come back and I need to embrace a potential new normal.

My only symptom was being constipated. Still have that which I am managing with one sachet of movical and a bag an apples. Keeping my regular but the cramps are still frustrating! If that is still an issue afterwards I’ll count myself lucky!

Hope you are okay and enjoying your family life

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@Emsypops wow! What a journey! Thank you for sharing. I know it’s helping me but also everyone that reads this forum!

I hope each day is getting better for you.

Little frustrated as the consultant NHS strikes meant the MDT meeting did happen. That said I support all NHS striking as they are saving lives!

Like you say one day at a time

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