Hello. Stage 4 diagnosis.

Hi Pippac205a3 and welcome to our group.

I’m really sorry to read this, and your other post where you seem to have been “fobbed off” when you were referred to the gynaecologist.

Post menopausal bleeding is a big red flag requiring further investigation, but that doesn’t seem to have been done initially. CIN1 will often resolve itself and the cells regress but typically in younger women, rather than post menopausal ladies. 

Then you had an ultrasound, but typically that is not the best type of scan to have to identify cervical cancer as it often doesn't identify any abnormalities. Your continuing symptoms should have been investigated further, but I see it took some time for you to have your mri and results. A 3c2 diagnosis must have been a real shock as well as a relief for you to have answers finally.

What treatment did you have? Was it concurrent chemoradiation followed by brachytherapy, or did you have induction chemo before that? I’m wondering too if you had any scans other than one mri-did you not have a ct scan or petscan at all? With the mass identified in the mri and an issue with your kidney, I would have expected more scans to be done to check for any spread. 

It is good to know that the immunotherapy you’re now having has shown some positive response and can continue-have they said how long the immunotherapy can continue for?

From what you’ve told us, there does seem to have been opportunities missed in your diagnostic process, and I can’t imagine how hard that must be to live with in a stage 4 situation. My cancer at my original diagnosis was treated fairly quickly, and although I was unlucky enough to have a recurrence soon after treatment ended that too was successfully treated by surgery.

You are slightly younger than me-I was 56 when I was diagnosed, and am now 63 and I consider myself very fortunate to be here still. This can be a very difficult disease to deal with, without as many options as some other cancers, and I really feel for you. You clearly tried to say things weren’t right, and you should have had better treatment.

How are you feeling physically on the immunotherapy? We have some other ladies in the group on immunotherapy, so if they read your post I hope they’ll come on and reply. 

Thank you for sharing your story with us, and I hope that your continuing treatment will keep things stable and give you some more time with your family. 

Sarah xx

Hi SarahH21

Thank you for your reply.

I did have a CT scan with dye and a PET scan also after they found on the MRI that the "Womb looks abnormal" that is seriously what the radiologist report said. 

Treatment wise, I had 5 rounds of Chemo followed by a break and then chemoradiation, then Brachytherapy.  All of which was horrible. 

I can continue with immunotherapy for as long as I am responding to the treatment.  TBH, I am only doing it for the family now.  I am ready to stop, but don't want it to look like I'm giving up to everybody.

I hope you are well now?  Do you ever recover from treatment?  I seriously don't think I will ever feel "well" again sometimes.  And of course everyone says how well you are looking, and then you have to have the "I'm fine" conversation. 

Sorry, I've been on a bit of a negative spiral the past few weeks.  I think that is what has finally prompted me to finally post something.

Take care. 

I’m not surprised you feel like you’ve been in a negative spiral…you’ve had a lot to deal with, and nobody can feel positive all of the time. Anger, fear, sadness are all very natural parts of our human emotions and very normal, so you don’t need to apologise for how you feel.

I’ve had so many of the “I’m fine” conversations I’ve lost count of them, although I’m getting better at being more honest these days. I did feel a need to protect others, especially my daughters, from worry…so my default response was always to say I was fine. Ultimately I don’t think that truly helped, and it would have better to have been more honest from the start about how I was feeling.

I am “well enough” now…if you click on my name you can read my story to date in my profile.

I found radiotherapy quite tough, but coped with chemo well though it gave me a pulmonary embolism which nearly saw me off and prevented me having brachytherapy. However, yes, I did recover from all of that and did feel well again until my cancer recurred.

It took me a year to recover from surgery after my recurrence, and I have a lot of additional issues now, though not directly connected to my cancer. 

Have you spoken to your family about how you feel about continuing treatment? I think it can be difficult to be really honest with those we love, but ultimately, it should always be your choice.

Sarah xx

Hi Sarah,

Thanks for the response and your very kind words, that come from a place of experience and empathy.

I will ring the macmillan helpline next week and have a chat with them.  I am speaking to my GP next week as I actually feel quite depressed I think.

Take care.  

x

Hi Pippa

I’ve phoned the support line in the past and found a kind, listening ear at times when it’s been difficult to chat to my partner. Sometimes it helps to speak to someone completely detached from the situation.

I’ve also had counselling on more than one occasion, and my last counsellor was an absolute gem-she really helped me. I suffer from ptsd and anxiety, and I was on medication from my gp when I was first diagnosed with cancer back in 2018. I’d just been put on the anxiety medication and very shortly afterwards got my cancer diagnosis, so my gp thought it would be beneficial to remain on the tablets-I did for about 18 months. This was definitely helpful.

I’d recommend chatting with your gp to see what help might be available for you in terms of medication if they feel you are depressed, or even counselling if you would be open to that. My gp started me on a different medication a few months ago to help as I was being worn down with debilitating pain, and very anxious that my cancer might be back. 

He got to the bottom of the reason for my pain, and the pain medication and the anxiety meds have really improved my life. I hope you find chatting with the gp will give you help to cope with your own situation.

Sarah xx

Hi Pippac205a3 yes, cancer sucks! I was originally diagnosed with stage 3c1 in October last year. After the chemo/radiotherapy/brachytherapy last winter,I thought I was on the mend. You can read my full story on my profile. By April, it had spread to the kidneys, hip bone and brain. My prognosis was 1 year with treatment. My chemo (carboplatin and paclitaxel) has stopped now, (I had 4 out of the 6), due to continuing to have low platelets. This was the doctor’s decision. I am continuing with immunotherapy (pembrolizumbab) and targeted therapy (avastin). I suppose I have resigned myself to this life that I have left. I have stopped working, am not allowed to drive, don’t have much energy, but I am now able to think about the small things I can do and be grateful for them. 
I had separate treatment to the brain (gamma knife therapy). 
So far I have responded well to the treatment. But I do worry all the time about what will happen and how it will play out. 

I am also in a forum on here called “Living with incurable cancer forum - patients only” which I find really helpful. We all understand what each other is going through. 

I’m sending lots of love and warm wishes, this is such a difficult place to be. Only you know how you feel x 

Hi mvic 

Thanks for the reminder about the incurable cancer group. I’ll put the link here for Pippac205a3 

Living with Incurable Cancer Forum

It’s very difficult for those of us not in the same situation to comprehend an incurable diagnosis,, but I’m glad you find understanding and support there, and hopefully Pippa might find the same.

Sarah xx