Waiting for an operation

Hi  and welcome to our little spot on the Online Community. I don't know where in the country you are, but in my experience hysterectomy ops cancer related happen relatively quickly. Endometrial cancer is slow growing so as you're stage 1 it shouldn't present a problem however I bet you want to get the "Alien" out asap.

I should pester your Consultant and make it clear you'd be available should a cancellation arise (if that's feasible for you).

I have confess, I've been on the forum since last August and can't recall anyone having the op privately.

Sending gentle hugs, Barb xx 

Barb, 

Thank you for your reply, much appreciated.  I am in London and have been referred to Barts.  I went on the NHS waiting times site today and it stated that waiting times for hysterectomies at Barts is over 52 weeks. I don't know if this applies to hysterectomy due to cancer but this is really scary.  Hopefully someone who had the treatment privately will see my query and give me advice about that. My consultant is due to call me on July 1st after I have another scan to see how things are working out with the hormones.  I'll take your advice and let her know I am available to go into hospital anytime the opportunity arises. Love and hugs to you

Cathy

Hi Cathy, can I suggest you have a look at this web page, https://eveappeal.org.uk/supporting-you/cancer-and-coronavirus/womb-cancer-and-coronavirus-faqs/

it has lots of info about how the pandemic may be delaying operations for womb cancer, and there is a section that may make sense to you about why they are offering you hormone treatment. I hope this is of some help.

Viv 

Hello Kittyrice, I am sorry to hear what you are going through, it must be really hard. I thought if i shared my experience with you it might help you (my initial post on this site was mid 50s, post menopausal just diagnosed….) which will give you my story and I’m probably one of those you mention - diagnosed April, operated May. However I don’t think i posted anything about being offered the mirena coil. When i had my hysteroscopy the nurse practitioner explained that if she suspected pre cancerous cells she would insert a mirena coil to prevent further change in the cells, she didnt do that as she said she suspected i already had cancer and said that if the biopsy came back and confirmed cancer that i would have a total hysterectomy. When it was confirmed as grade 1 cancer, I therefore went into my appointment with my consultant surgeon expecting a hysterectomy. However, what he actually started talking about was inserting a mirena coil which he said he could do there and then. He assured me that it would hold the cancer at bay and in some instances where the cancer is at a really early stage, it can reverse the cells. I was really shaken as this was not what i was expecting. I have always been a worrier, but after failed fertility treatment, several miscarriages and an ectopic pregnancy i became very depressed. I don’t think it ever really goes away. It lurks waiting for you to become vulnerable. I think i know how to deal with it now but requires me to try and keep ahead so that i preempt when it might come back and take action before it gets a hold. My relationship with my womb is a very negative one. I’ve hated it for letting me down and failing me and causing me so much heartache. When talking to my consultant he says some ladies are very emotional at losing their womb, the connection to their children etc but definitely not me. I wanted it removed and i felt that anything else would take me to the darkest of places. So it was agreed i would have a hysterectomy and i was given a date. I do think that if I’d already had the coil fitted at the time of my hysteroscopy, I wouldn’t have been given a date and would have been put under review. I was then passed on to nurses who told me more about the hysterectomy procedure etc. I chatted to them about the two options I’d been given and they both said that my surgeon would never have suggested the coil if he had not felt it was a good option for me or endangered me. I never fully understood the reasoning behind offering the coil as an option, it was suggested that if i lost some weight before the op that would be helpful but i explained I’d never lose weight in those circumstances probably the opposite. In my own mind i suspected they might be prioritising ops to those who’s cancer was more advanced whilst holding early cancers at bay until the operation could take place as i think they are overwhelmed at the moment catching up after COVID restrictions. I do realise how lucky I have been. The point that I’m trying to make and perhaps not very well, is that i was repeatedly told by several different professionals that the coil option was a safe and well researched option to stop the cancer from getting any worse.  Knowing the team and the care that I’ve had from them which has been amazing, i hold them all in the highest regard and if they thought the coil to be a good solution then I’m sure it would have been fine, i hope in some way that might lessen your worry and the fact that they are scanning you too, but i know its not easy and like you i would be struggling mentally. Moving on to your question about going private. If you contact the Nuffield I’m sure they’d be able to give you details. I expect they have gynaelogical oncologists on their books but i suspect that a lot of private work has been suspended because of Covid. The document that jigsaw posted is very informative, I’d never seen that until today. Good luck with your journey xx

Hi Viv,

Thank you for the link.  It helped me understand that hormone treatment can keep things at bay until I get the op and radiotherapy. The specialist nurse did tell me but the information in the link was like getting second opinion.

Kind regards,

Cathy

Hi Paeony,

Thank you for telling your story. It has reassured me, together with the link from Viv. I am not worried about losing my womb. I am 66 and have three sons so my womb has done its work. I would just like to see my grandchildren reach adulthood, the youngest two are four years old so I have to keep on keeping on for at least another 14 years. I have a sister who is 87 and a brother who is 86 so I am hoping I will have their longevity gene once the cancer has been beaten. 

Best wishes, 

Cathy

Hi Kittyrice

i was diagnosed between April and May after all the tests and saw my consultant for the first time on 27thMay.I was told I would be given an appointment for the op in about 3 weeks and wanted it over and done with so enquired if he could do it privately.I was quoted about £8000 when I rang his secretary.I was very fortunate to get an NHS date within a week and have had my hysterectomy on Tuesday.I would definitely ask why you are not being referred for the op sooner.

Good luck  and I hope  you get a speedier outcome for your treatment.

  Hi Cathy. I've been thinking about you. I know you wrote the waiting time for hysterectomy's at Barts is over 52 weeks but surely that's just for bog-standard procedures for fibroids, not cancer. If I were you I'd be pressuring my Consultant/Oncologist for getting an op date soonest. I do know that these coils are effective and many ladies had them in the first instance. 

It won't be long until July 1st but I feel for you!

Sending hugs, Barb xx

Menorca 456,

Thank you for taking the time to reply. I will definitely ask about why I am waiting so long. I guess I will start asking for any information in writing too, as I email and then the hospital phone me.  I think if I put my question in an email they should email me back. 

Best wishes, 

Cathy