Scared waiting

Dear Chicago,

Sorry to hear your story, but hope you find support and comfort from joining this group.

Like you, I was booked in for a full hysterectomy (which happened in December 2020) following discovery of a 10cm mass on my ovary - I am 59. My CA125 was above 400, but still it wasn’t possible to confirm whether the mass on my ovary was cancer or not until the op / biopsy was done. In my case, it did turn out to be a stage 2b tumour but I know there are many other things that can cause raised CA125 levels, so it’s by no means a given that it’s cancer. I also had what is called a frozen section. Don’t know if that’s an option for you, but could be a question to ask ? Basically, it means you spend a bit longer in surgery, but samples are taken and analysed while you’re under anaesthetic, to give the surgeon the best chance of completing all that’s needed in a single op. For me, although I was of course afraid going into theatre without knowing fully what I would wake up to, I felt it was better than facing the possibility of a second op and more waiting.I remember feeling most afraid during the period of waiting for the op though, as it seemed that was the only way to get some certainty and get back on with my life, yet the next steps were completely out of my control.

From the CT scan which confirmed the size of the mass to my op, I had about a six week wait, and the pre-op was 2 weeks before my op (to allow for a period of isolation). Sounds like the wait time may be a little longer now (Imost likely due to the effect of the pandemic on the NHS) and the only thing I would say is that using those weeks to keep active, eat healthily, and build up strength really helped in managing the symptoms, and getting through both the pre-op checks and the post-op recovery period.

Hope it goes well for you, and hope to hear through this chat group how you get on.

love Bx

Thank you it makes me feel maybe this is the normal process . What is the next action for you, ? so sorry it is cancer I send all my best wishes 

Hi Chicago - Seems we are in the same process, I am waiting for surgery for a 10cm complex mass on my ovary.  It was scary but now that I have got as much info as possible, surgery seems to be my best option.

During the weeks of ultrasound - CT - consultant phone meetings etc, I was very anxious, They cannot confirm that I have or have not got cancer but I am 69 (a young 69)! my CA125 is  or was 78 so the probability of cancer is high.

I managed to get a private oncologist appointment for tommorrow!! its a 250mile round trip but worth it I hope.

If you want to know the outcome let me know, the thought of progress raises my hopes and lifts my depression so much.  It is also valuable for me to talk to someone who is at the same place.

Jaybeth

Yes would love to know how you get on and share experiences . Everything is so worrying and reading things about the hysterectomy is scary too. Love to know what your oncologist says , good luck  

Hi I’m currently in hospital having had a total hysterectomy and omenectomy yesterday for a large complex mass on my right ovary - all has been sent off for staging to make treatment plan

My journey started on 4th Feb so has been quite quick of which I’m glad - as for surgery it’s not too bad sore of course but am up and about today and hopefully home by the weekend - just glad got main surgery done before any chemo etc

Positive thinking is what’s required and try even though I am guilty of it too not to google too much !! Xxx

Hi Chicago,

Thanks for asking - having come very successfully through my surgery in December, I started on chemo in January and am now on my 3rd cycle of carboplatin / paclitaxol. I’m generally doing OK, but as you can see from the timing of this message, one of the downsides of the steroids they give for anti-sickness after each treatment is not getting a good night’s sleep !!

Seeing my CA125 results come down from 404 pre-op to 19 last week though makes everything worthwhile, and it’s all been very do-able with a great medical team, a positive attitude, and just focussing on getting through one step at a time.

I wish you all the best with your upcoming appointments and surgery - keep well, and keep in touch if you’d like to,

Bxx

So encouraging thank you for posting, are you NHS patient ? It seems so quick . Let’s hope for a speedy recovery . Take lots of care of yourself . 

Thank you for sharing, ca125 numbers sound really positive for you. It really helps hearing from people whilst trying to keep a brave face for my close family. 

Yes NHS xx

Hi and thanks for the reply.  I know many who have had a hysterectomy and live a full life.  Sometimes the info we get hold of from some sources, gives us the worst scenario and doesn't always apply to our own situation.  I can now accept that surgery is my way forward. 

In the future, I feel sure there will be better options - maybe, discoveries to cure our diseases without surgery.  Perhaps when prevention is the norm' or at least a regular CA125 might help.

I met an oncologist privately on Saturday, a long journey but I made it on  my own.  He was brilliant, gave me so much information, what an expert! everything made so much sense and I felt a great flow of trust which is the first time this has happened.  During surgery they will do a lab test (frozen section) to check the extent of cancer, this will tell them what they need to do for best result.

He answered my questions precisely, he suggests that the probability of cancer is 50%, this is better than previous suggestions, but no-one can be sure until surgery.  I have a phone appointment on Saturday when he will have a date for surgery, he thought 2 or 3 weeks.  Yes I too am really scared about the surgery. but, others survive well and I want to see my grandchildren grow older.

The lack of high dependency beds in hospitals due to covid patients, is now easing.  Because of this it would seem they have to prioritise patients for surgery by 'need' and they have a backlog.  The surgeons and staff deserve a medal at least, they must be under so much pressure. (as are we people)

My diagnosis was in January so at the earliest I will have waited 3 or 4 months for surgery. I don't know what the 'normal' wait would be.  It is good to ask all the questions you need answers to and I hope you get them soon,

For me, the days get easier when I have made progress.

Take deep positive breaths when needed,

Jaybeth