Newly diagnosed and frustrated!

Hi Janne and welcome to the group and to this emotional roller coaster ride! You’re in good company here. I was diagnosed in 2021 and met some lovely ladies here who were a great support. I was fortunate that I was given the phone number of my CNS (cancer nurse specialists) when I was phoned with my initial diagnosis, so I called them same day and often 2-3 times a week after that. I also phoned the Macmillian helpline (0808 808 00 00) which is open 8am-8pm 7 days a week and I’d highly recommend it as everyone I spoke to was lovely. I’d suggest giving them a call in the morning. It’s understandable and also okay to be anxious. Part of this experience is about learning how to manage the anxiety. 

Different hospitals work on different timescales depending on demand, but for me it was like this: saw GP mid Sept 2019, was put on a 2 week pathway, had an ultrasound within a week, then a hysteroscopy a week after which failed - so I had a second one under GA 4 weeks later at the beginning November. Results from that took 2.5 weeks, and I had my staging MRI a few days later. Got the results mid November and had my hysterectomy towards the end of Jan 2022, so that was 4 months from first GP visit to op. 

I’d suggest phoning your consultant’s secretary on Monday and asking for the phone number of your CNS. Consultants work closely with CNS so the secretary should en able to help you. And in the meantime, you could call the Macmillan helpline number for support. 

Hi Janne.

My thoughts are with you as the unknown and delays in communication can actually be the hardest part.

Could emailing your consultant's secretary be an option? As this means you can do it now and it would be top of their inbox for Monday morning. It may also help free your mind a little to refocus on nice things for the rest of the weekend.

Hello,

Thanks for your reply, that's really helpful.  We have to go through a single point of contact at my hospital.  I've sent them an email and hopefully I'll hear something soon.

Hello,

Thanks for this, I've sent emails to see if anyone gets back to me.  Fingers crossed! 

Well done, though I found phone calls tended to produce a quicker response. Once you have the CNS phone number (push for that) it should be easier for you. Don’t be afraid to be a nuisance! This is your mental health and life and you matter! 

Hope things get moving for you, I can totally empathise with the work situation, I resigned from my role.as a school counsellor last week (very reluctantly) but just feel empty. I'm "lucky enough" that I have had my hysterectomy, am just waiting for results re Lynch syndrome. 

Good luck

Thank you.  I finally had a phone call late this afternoon from the Macmillan Nurse.  I think there had been some internal communication issues but at least I feel like I have contact with someone who knows the system. 

I'm sorry you have had to resign from your role, but I can understand why you have - it does feel as if there's nothing left in me to support others.   I'm very lucky that I work for a charity and my manager has been very understanding and we are adjusting my role so that I'm not carrying a caseload until I feel ready to do so. 

I also need a blood test for Lynch syndrome - not something I'd been aware of before. 

I hope all goes well for you.

Hi Janne, I’m so glad you’ve at last heard from her and hopefully now also have her direct contact details. Just for your info, my hospital (Southampton) routinely does a Lynch pre-test as part of all endometrial cancer hysterectomy histologies. So it’s fairly common to check. I tested negative on the Lynch pre test, but did have a BRCA blood test (also negative).

Hello Joanne and a warm welcome to this group, I hope you will get the support just like myself 2 years ago. Just to set your mind at rest a little, here's what timeframe I faced......it was late October 2021 that I noticed a bloody watery discharge,  my GP after a telephone call from him sent a referral straight away to have a transvaginal ultrasound scan, that appointment was early November. Mid November 2021 I received an appointment for hysteroscopy for 24th of same month, at hysteroscopy my consultant information that it didn't seem of any great concern, only that I had a thickening of womb lining and a large polyp that he couldn't successfully remove but he took biopsies of both the lining and the polyp. He informed me the worst case scenario would be hysterectomy and best would be another attempt with different instruments to remove the rest of the polyp. He said results would take about 3 weeks. About a week later, we are now in early December 2021 I received a call from the CNS inviting me to a consultation about the results of hysteroscopy and also informed me the consultant had booked me appointments for both MRI And CT scans ( by now I already in my heart know it's cancer) I had my consultation on 14th December 2021 where they did confirm cancer found but no other info about which type of cancer, few days before Christmas I had my MRI and CT scan,  I received a call from the CNS nurse with the preliminary results that it was early stage 1a if whatever it was but still no grade of cancer as it was yet to go to MDT, there was a hint that my case may be transferred to another larger cancer specialist hospital near my location. So then we had Christmas where it did seem to slow things down, I tried calling my CNS and was leaving messages on her answer machine, I later found out she was off sick with COVID!

At some point in January I got a call from another nurse apologising for lack of communication but she did say I should have received a letter in post informing me that my case had indeed been transferred to the other hospital (ADDENBROOKE'S IN Cambridge) and that I would hear from them soon, in fact it all escalated from there, I did receive an appointment for the 19th January 2022 and at that appointment it was relayed to me that I'd actually got high grade Serous and a hysterectomy was booked for the 25th January 2022. 

This takes me to around 12 weeks from early symptoms of  discharge to the actual hysterectomy. I too was frustrated with the lack of communication and worried that while nothing was being done it was spreading out of control, my IBS had come back during the waiting phase, I completely understand, but want to reach out to you to let you know that I am here, I am well, and back to normal life and trying to put that episode in the past.

Hope you get the answers soon but hang in there, use this group to ask anything you think of and try to enjoy Christmas if you can,  take care xxx

Thank you for your reply and that information about the timeline.  It's so good to understand the process a bit better.  I'm so pleased to hear that you are back to normal life, that's very reassuring.  I have heard from my specialist nurse now and I know that the CT Scan didn't show any evidence of spread.  My MDT is tomorrow morning so I should know a bit more by the end of the day tomorrow.  Meanwhile trying to stay sane by getting all of the Christmas prep done!

I hope you have a lovely Christmas.

Janne