Hello!

thank you for responding- we are in the same boat. I am annoyed with myself for not going to GP earlier - I now look at symptoms and so many things should have told me to go to GP and I simply went cause I could not shift a water infection. May I ask what prompted you to go to GP? I had to wait ten days for my scan - but I drove home from that scan and as I walked through front door my GP phoned me to say I was on cancer pathway via NHS - go back on 17th but I cannot fully remember what she told me. I will call tomorrow and see if she will repeat what she told me on Friday.

I am 54 - post menopausal, can remember the GP telling me lining of womb was in excess of 10mm. I did have to call hospital and progress my appt for scan and they had the wrong address for me - apparently hospital has different database to GP!! Letter went to where I lived four years ago! So glad I phoned to find out what was happening. Take care to you too and maybe it’s worth phoning hospital to check your referral is there?

hi laney

Appreciate your reply

I thought my `pains` were part of my ME / CFS, so did not really think they would be anything else, cos got sick of being told ` its the CFS / ME / FM`.  We also had a lot of upset with my dad recently being very ill very quickly and subsequently being diagnosed with leukemia - thankfully all is going well for him at the moment, with monthly check ups etc.  I had pelvic pain, which i put down to pelvic arthritis issues, hip arthirtis etc, but then started with agonising pain in my rectum at the same time as the frontal area.  When pains were bad i had frontal discharge which was pinky, and not pleasant.  I went to GP and had an ultrasound which showed a polylp and thickening of the endometria / womb lining .  Went for hysteroscopy, the polyp was too large to take out in an outpatients setting, so did biopsies.  A week later got a call on a friday aft to see consultant on monday.  Told womb cancer, biopsies `very abnormal` - treatment  needed within a 4 week period.  Went for MRI to see if spread to other pelvic areas , etc, thankfully has not.  Got my pre-op date and pencilled in surgery date - all just one day over the 4 wek period.   Hoping the hysterectomy can be done by key-hole, quicker recovery etc .  Thanks for your response, take care, x

hi Laney

it is so hard not knowing. My consultant has been straight with me, explaining everything each step of the way, he’s quite frank but that’s how I want it, can’t bear thinking that he would just sugar coat anything and I then get a massive shock. Would rather be prepared and if it’s bad news then I’m half way to accepting it. Hope your surgery goes well.  Keep in touch please xx 

i had the hysteroscopy done and a week later go a call on the friday afternoon to say the consultant wanted to see me monday, so knew sumthing not right.

I have had good communications from the consultant team, secretary and supportive gynae specialist  Macmillan nurses who are there to speak to in office hours.

I asked the specialist nurses a bit more about whether the op would be key-hole and hey did not reply, i suppose that from when the hysteroscopy , biopsies etc are done things can change the day of surgery. It`s all such a worry, take care, xx

take care, deffo gud to know sumone else knows EXACTLY what i am going through, xx

thank you. It’s certainly helping speaking to you lovely ladies and knowing you’re going/gone through the same thing xxx

Hi ladies

Just found this thread and thought I would add my experience. I’m the other end of the journey from you and have just had my first post treatment follow up where I was told there was no sign of cancer. 

I was diagnosed in April 2018 with endometrial cancer after scans and hysteriscooy. I had keyhole surgery to  remove everything in May 2018 and stayed in hospital overnight. I had a second op to remove lymph nodes in July 2018 again an overnight stay. Fortunately they were clear and I had three sessions of internal radiotherapy in September. If you have any questions please ask and I will answer based on my experience. However everyone’s plan is different and suited to them individually. 

I hope everyone’s journey goes well Hugs to you all.

Sundial

hi sundial

appreciate your repsonse, x

Good to hear that you are doing well

How soon after the surgery were you able to do things like going out - i have a concert with VIP extras , 3 weeks after the surgery date , i will be attending the concert on my own, i know its not a necessity for me to go , bu i enjoy such events and am using it as my goal after surgery.

I also have other medical conditions that may contribute to a longer recovery - ME / CFS / FM, so hoping these don`t cause too many extra issues.

Post -op pain relief is one of my major concerns as the ME / CFS / FM causes chronic pain anyway and  am on maximum pain relief that i can tolerate for that - so wondering how that will go

After the initial key-hole hysterrectomy, how soon was the radiotherapy started, and i respect your privacy here, but did you have any side effects of internal radiotherapy

Am very concerned about `the menopause` symptoms, i am 47 years old and have had random symptoms for approx 6 months, but no proper `period`, 

tks for response and info, its much appreciated

xx

Hi

i recovered pretty quickly. It took me about four weeks to really be back to normal, I still got tired and outings were good but tiring so I made sure I rested the day before and the day after. I had a problem with one of my wounds infecting and had to go back into hospital overnight for IV antibiotics so that slowed me down a bit. I’ve also been type 1 diabetic for 57 years on insulin injections. However I managed to sort that out pretty quickly. I don’t drive so can’t tell you about when you’ll be fit for that so it might be worth considering other transport means if you can. Also a good tip is to do the exercises they recommend and try to walk upright. There is a temptation to lean forward which I did unspwiitingly and it left me with a painful lower back. 

As for pain I suggest you discuss that with your surgeon, I was fortunate in that I had very little pain and paracetamol was enough for the first few days. although I know some people have more pain so it’s worth discussing it, They gave me a spinal injections before the general anaesthetic which I think was intended to reduce pain. It certainly worked in my case.

i had internal radiotherapy which I believe is usuallly carried out at about six weeks after surgery.  Mine was slightly different because I had to have a seconded op. Internal radiotherapy has fewer side effects that re usually temporary. I had a few issues with constipation which was soon remedied, I believe there can be temporary uribary issues but I didn’t get any. The RT itself is painless. I hardly knew anything was being done. However it is a leave your dignity at the door occasion. Lol. It actually sounds far worse than it is.

i had already gone through the menopause so it wasn’t an problem for me. Again discuss it with a specialist nurse. There are meds’ they can give you if you need them, 

Will you see your consultant again before surgery or do you have a specialist nurse contact number? It might be an idea to write down these questions and ask them. I found that they are vary helpful.

I hope everything goes well. Please keep in touch. Don’t hesitate if you have more questions, I’m sending a virtual squeeze from my hand to yours. 

Sundial

I’ve sent you a friend request if you’d rather talk through private message. 

Sundial

sorry Subdial

ive had a break from the internet for a week, I don’t have a friend request. Hope you’re well xx 

hi Laney 

how you doing? Been thinking about you. Did you get your results? Xx 

hi Laney 

how you doing? Been thinking about you. Did you get your results? Xx 

hello - after hysteroscopy two weeks ago they decided to take biopsy under anaesthetic. I go into hospital this Friday (3rd) for that procedure. The wait goes on and I was gutted they could not get what they needed two weeks ago - just longer to wait. Apparently they did take a polyp from cervix and that was benign so that’s a positive but my GP said she could have done that at a smear test. Anyway - not long now. Thank you for asking and hope you are well. Will update when I get an update :-)

xx

hi ladies

following on:-  had my pre-op assessment today and was told it would be a full hysterectomy - i am pre-menopausal ay 47, thought i was just having womb removal, but now will be womb, ovaries & fallopian tubes.  I will go straight to menopause.  Polyp too big to remove in out-patient, womb lining thickened.  Laprascopic / key hole surgery on 2nd may, may be able to come home same day /  overnight if needed.  Best wishes ladies , x

awww Laney, I guess they’ve got to do it to be on the safe side. I know a couple of people who just had their womb removed and then a couple of years down the line had to have ovaries removed so maybe it’s best they do it all together save you the trauma of a second op. Xx 

Hi

I am going through a rollercoaster of emotions. I had a scan a week ago. Radiographer said everything was fine and nothing to worry about. So can you imagine the shock when i went to the GP 2 days ago and she said we need to fast track you for a hyteroscopy because your endometrial lining is 16mm. It didnt sink in and i still thought it was precautionary. I said should i be worried and her response was " yes if i were you i would be very worried"  i cant seem to focus. I have so many questions going round in my head. I am 52 and having irregular periods, so didnt think anything abnormal about spotting after my period.  I just put it down to menopausal symtoms. Is having a 16mm lining definitely indicative of cancer? Can it just be a thick lining?  I remember having a hysteroscopy in 2014 when they removed a polyp and they said then that i had a thick lining but not cancerous. Nothing was done and i had no further  investigations or tests. Now 5 years on i have cramping pain, bleeding/ spotting nearly every week for a few days. Waiting for my hysteroscopy next week. Looking for support and guidance as i am very confused. Thank you

Hi All

I had my last period in late summer 2017 and a Small spotting in 2018.  GP told me probably fine but if it happens again to go back.  It happened again this August so am now about to start tests.  I guess you don’t know until you have tests however does anyone have knowledge or advice on how long cancer takes to develop to the various stages?  Or is it  different for everyone?   

It’s reassuring to find this thread.   

Xxxxx

I'm not sure the GPs always have all of the information.  I think most of them follow a set of guidelines (if they are diligent) and refer you to the specialists who do all the tests and put the results together.  The doctors are trying to do what they can but are generalists.

The GPs only get a summary and not the full scans to interpret.  I went to GP for some reassurance and came out in tears as he reinforced that they were looking for cancer.  The hospital on the other hand say they trying to rule it out as the cause, and need all the test results before coming to any judgment as its often a different cause.

Yes i guess you're right GP's are not specialists, but i guess it's just the way they handle the situation. Like yourself, i left the surgery in tears.

I'm now just waiting for my hysteroscopy which is booked for this Friday and then await the biopsy results. Does anyone know how long it takes for biopsy results to come back? Is it 2 weeks?.  Agonising wait!!! 

hi

Niki26 , Daphne1 & all who are reading :-

i am 47 , previous history of numerous health conditions such as CFS / ME / PCOS/  OVERWEIGHT, always had irregular periods, but did not have one ofr over 4 months :-

Had smelly discharge for over 6 months, just though was stress as one parent was seriously ill, had worsening pain in my anus which over a couple of weeks got unmanageable, tried IBS meds with no reduxction of symptoms.  You know your`e own body better than anyone!

i had a ultrasound which showed a polyp and some thickening of the lining of the uterus,

was referred within the two-week time scale, had a hysteroscopy where they could not remove the polyp becos it was too big, uterus lining was thickened and they took a biopsy - just uncomfortable / crampy pain for a couple of minutes whilst sample was taken.

I received a call from the GYNA team on a firday  to go for my results  on the monday ,which was less than two weeks & was fitted in, so i knew it did not sound good, told i had ENDOMETRIAL / WOMB CANCER,

Had key-hole hysterectomy 4 weeks later, was in hosp just overnight, managed on paracetamol as pain relief for one week, was just uncomfortable, not agonising at all.  Whole team were great with me.  I have only 4 very small scars to show for after the surgery

4months down the line i have a few menopausal issues, no pain have had a recent discharge infection which was treaed with antibiotics.  I had great support from the GYNAE TEAM, from the consultant, nursing team, Macmillan specialist nurse.

My womb cancer / endo cancer was caught very early and was lowest grade, surgery was the ONLY treatment i needed.

Your symptoms may be minor, or even non-GYNAE, but youv`e done the right thing by going to your GP, i kept saying to mine that the symptoms were different to what i usually had, it`s not IBS, i was in pain, etc, you know what`s right for your body and what feels different.

hope this helps

take care

Hi Snoopy47 and hello to all in this thread

I am on this pathway too having been recently diagnosed at the end of August. I too had thickened womb lining of 16mm and which led to a diagnosis of stage 1a endometrial cancer. It was a huge shock at the time and at the age of 54 had put my symptoms down to menopause. 

I have had my preop and am now booked in for sugery just inside the target date of 31 days since diagnosis.

snoopy47 - I have a similar history to you and good to hear your experience to date and gives me some comfort for my op which is planned to be open surgery with a total hysterectomy so expect my recovery time to be a bit longer :(

I know this is a forum that we all would rather not be contributing to but it is good to find somewhere that others have had relatable experiences to mine.

As earlier posted I reiterate listen to your own body and don’t dismiss anything unusual for you. I had seen my GP 8 months before diagnosis with my symptoms and was met with a dismissive response and only because I had to go to OOH with pelvic pain that I was encouraged to go back to my GP and insist on further investigation.

Best wishes to you all

Hi everyone

Thank you Snoopy and Tinkabelle.

I have been going to the GP since last year and each time my symtoms were dismissed as menopausal.. I agree please listen to you bodies. 

Well today was the day of my hysteroscopy. I am still in pain and bleeding. Biopsy was taken and she also found a polyp.  Unfortunately she couldnt remove the polyp today as she did not have the equipment.  Si being fast tracked for removal of the polyp within 2 weeks.  Consultant said i would need a GA or spinal anesthetic for the procedure.

The waiting continues, endometrial biopsy done today and then will need to wait for the polyp biopsy.  This is the most angonising bit of the journey.

I am so grateful for these forums. I am seen as the solid supportive person who is always there for everyone else. I am always picking up and supporting others, i cannot break down and talk to them. They all have so much on their plate. :-(

I wish everyone best of luck  on this difficult  journey xx