Concerned Newbie

Hi Solo65d7870d and welcome to our group.

I’m sorry to read about your diagnosis, and particularly the way you found out that your staging had changed-what a horrible shock for you. 

Getting a diagnosis of cancer is a big enough thing to deal with in itself, but seeing a letter like this before your appointment to discuss a treatment plan must have certainly ramped up your fears while you wait. The standard treatment plans are very similar for most of us, with some tweaking depending on our individual circumstances, and I would assume that the petscan has shown some lymphnode activity, which automatically results in a higher staging. 

Stage 3c has two different sub divisions-stage 3c1 and stage 3c2 depending on where the affected lymph nodes are located but your treatment should be the same in both cases.  From initially seeing your doctor for the bleeding to your position now has happened quickly, but I do appreciate that things will seem to be moving slowly for you while you want to get on with everything. 

We all, I think, fear the cancer spreading while we are in this waiting limbo but all of your results would normally need to go to an MDT meeting (Multi Disciplinary Team) where all the professionals involved in your care discuss patients and the best plan for each individual. We would like immediate action, but things do take time to happen, and that should not affect your outcome.

There will still be some more waiting for you unfortunately-I would expect that you would need to have chemotherapy (two different drugs) on its own first for several cycles, then have concurrent chemoradiation with a different chemo drug, but that will all be explained at your appointment. I first went to my doctor with post menopausal bleeding in the August of 2018, and started my treatment for stage 2b in the first week of November that year, but at that time it wasn’t standard to have chemo first so I went straight to concurrent chemoradiation. However, results from a trial which was being undertaken at the time showed very good results for having chemo on its own first, so that has now been incorporated into treatment protocols. 

It’s a horrible, scary time, but I’m glad you’ve found the group and hope you’ll find it helpful to be among people who understand. Please feel free to ask any questions here and share any worries as you go along and we’ll do our best to support you through. As mums, we are usually the strong ones for everyone and we try hard not to show we’re scared but it’s ok to express those fears here.

I hope you’re feeling well physically at the moment, but it does take time mentally to process all of this news and that’s very normal. You don’t need to feel strong and positive all of the time, so allow yourself to feel whatever you feel would be my advice, and take things a day at a time. Keep in touch with us and we’re here to help.

Sarah xx

Hi Solo65d7870d

this is my first reply on a post ,but have been following fir a while.

I am 48yrs old and had been having bleeding that had got progressively worse over 18months. Nonpepvic pain but unusual discharge . I went to and from GP regularly. Had a gynae appointmemt in January 24 and an internal scan in December 24 nothing concerning was found . Fast forward to many more gp conversations and me literally saying i cant function on a daily basis due to the amount of bleeding it was encouraged for me to have the coil fitted .Something i never wanted . But agreed as i needed my life back ! Anyway this never happened as gp discovered something and i was sent for biopsy on 6th June 25 by 12th i was diagnosed with cervical cancer and by the end of following week had a pet scan and mri . 2 weeks later i asked very little about my staging though i now know im stage 3 all contained in pelvis .plan was put in place of 6 weeks of Paxlitaxel and Carboplatin.that started on 16th July . Which i completed and with the cold cap i kept my hair . Just had my first Cisplatin on Monday 1st September and 3rd radiation is later today . Hope that explains me and the probable time line for you . Wishing you all the best and here if you ever want a chat xx

Hi Vicburr and welcome to our group.

I hope the rest of your treatment goes smoothly for you, and the group is here for you too if you need it.

Sarah xx

Thankyou so much . 

Thank you for your comprehensive reply. It is a comfort to hear from those who have been through this too.

Thank you, I hope your treatment goes well. I have a date now 18th September for planning I think. x

Hi, 

Yes, it’s a scary/ worrying place to be. I was diagnosed with stage 3c1 (grade 3) adenocarcinoma of the cervix in October 24. I had to wait nearly 4 weeks between seeing the consultant and the first day of treatment. It felt like forever. But at least I knew there was a plan in place. 25 sessions of radiotherapy (over 5 weeks), with 1 day each week of cisplatin chemotherapy (5 sessions in total). This chemo does not cause hair loss. At the end I had 3 x brachytherapy (internal radiotherapy). I was dreading this, but the team kept trying to tell me that it wouldn’t be as bad as I was thinking. And to be honest, it wasn’t. This was probably because I had some sedatives beforehand just to help me keep calm! 

If you want to read the rest of my story, you can click on my name and read my profile. 
Good luck  

Thank you for sharing it really helps. I've had a tough day talking to a specialist nurse, its the language they use which is everyday for them but not what I was prepared to hear. 

A radiologist kindly rang and explained my PET-CT scan results. Although there are some blood vessels/clot on my liver he said don't worry about it. Easy to say!

• I am Stage 3C2,  I will have to wait to find out what the treatment will be. In the mean time I'm looking after the rest of me, being outside in nature is my happy place.

Thanks

S

Hi, 

Thank you for sharing some of your story here, I’m so sorry to hear this is happening to you. I’m sorry you read this is a letter too. What a shock that must have been.

I too have learnt today that I’m stage 3c after 6 weeks from initial (stage 1) diagnosis.  I share your mindset or problem solving by nature and optimistic but there is no doubt…  it’s scary. The unknown is awful too. Keep that beautiful mindset where you feel able. 

I have children in their 20’s and I’m not sure how old your children are but I share your heartache about this part of the journey… and I send you (and anyone else reading here) lots of love and strength. 

My consultant meeting us next Wednesday where I’ll know what treatment is. I’m scared. I’m ready. I’m different every day.

I wish you all the care and support for the start of your treatment. 

Jill 

Thank you Jill. I wish you well with your next appointment and stay positive. I find having information and reading other's stories helpful to know I will get through this too. I am doing my best to eat well and stay as fit as I can. 

I have had my planning scan and kidney function tests, just waiting for my start date. I am to have chemoradiotherapy followed by Brachytherapy  which may need to be at another hospital.  We can cross that bridge nearer the time.

My children are in their 30's and lost their Dad 7 years ago mainly due to  hospital mistakes so are naturally more anxious. I have been more honest with them recently and am lucky to have very supportive friends. They both came with me for my last consultant appointment and asked the questions they needed to know.

I wish you well in your next steps and keep believing in yourself

S x