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

After the nurse found a polyp 2 months ago I ended up on the 2 week pathway, where they also found cysts etc.  I never had the GA hysteroscopy and polypectomy I was due to have in the end, the recommendation changed to a full hysterectomy which may well  be by open.  Then I get the biopsy results and take it from there.  I am terrified of having a major op but the last 2 months has been so slow and stressful, and I still don't know if I actually have a malignancy or not, I am hoping it will reduce risk of going through this again as I'm 50 and if they do the ovary removal which was originally the plan, and then find endometrial biopsy not clear I will have to go through it all again!

Hi Snoopy47

I have some of the symptoms you described in your post particularly PCOS, being overweight together with the rectum pain, so am interested if your hysterectomy improved any of these. 

I appreciate it if this is too public arena but would be genuinely interested and if you would rather reply privately that would be good.

 Thanks x

Hi everyone

Thankyou for everyone's feedback

What a whirlwind of emotions. So i have a date for my polpectomym its this Friday 18th of october whch is 2 weeks from the date i had my hyteroscopy.   I phomed up today if they had the result of biopsy, only to be told that that the sample they took during the hysteroscopy was inadequate and now they will take another sample when they remove the poly and put in the mirena. What i cannot understand is that they are adamant that i have all this done under GA. I dont want a GA.  Can they force me to go under GA? I had a polyp removed 5 years ago and i didnt have anything. She said well things have changed since then and we now do them under GA  i have my pre op assesment on wednesday and i will air my views of not wanting a GA.

Waiting game continues!!!!!

I have had remains of one removed under GA as they couldn't see the starting point.  They may have reason, but it's so hard when they don't have time to explain, I ralise hey spend a lot of the discussing and reaching conclusions without us involved, so yes, you have to keep asking qu and persevere  until clear on reasons,  I mean it's us that live with consequences. 

Thanks daisy. 

How long were you under GA? Did you get to go home the same day. Yes i do understand they may have their reasons but its good to be informed why they are doing things the way they want to  i have so much fear of GA, my mother had difficulty coming round from a small endoscopy procedure when the consultant gave her a GA. So i have my personal reservations against a GA.

I hope you are feeling better after your procedure. I guess we have to wait around 2 weeks for the biopsy results.

Good luckxx

Hi ladies I'd already posted in general before I found this thread

I had scan on Fri afternoon, told I needed a gynaecology referral, was rung by gp as I arrived home asking me to go in on Monday

Went in today to be told they think I have endometrial cancer and am on a 2wk urgent referral for tests. I'm shocked, numb, and I've convinced myself they're wrong and it will all be ok

Reading your experiences has really helped me, I just wondered if the procedures were painful 

hi Sm24

the hysteroscopy was a little uncomfortable, but not painful, there were staff there to hold my hand , reassure etc to get you through it, if it hurts just let them know.

Hope all goes ok, i  had very early stage 1a, earliest detected,  i was lucky enough not to have needed anything other than surgery for a hysterectomy.  

take care & best wishes

Hi snoopy

Thank you for your reply

That's comforting to hear, as an fm sufferer you'd think I'd be used to pain but I'm actually a bit of a baby lol

I'm obviously hoping that the tests come back negative but I'm also prepared for the official diagnosis and hopefully if it is that they've caught it early

Thanks again 

Hi sm24

Similar to yourself, i was fast tracked within 2 weeks of having a scan with possible endometrial cancer. I had a hysteroscopy 2 weeks ago where she saw a polyp and took a biopsy sample. She was unable to remove the polyp and the biopsy sample was not sufficient. So last friday i had another hysteroscopy, the polyp was removed, uterine biopsy taken and mirena coil fitted. I had the option of having a GA or epidural. I really wanted nothing but it was in my best interest to have some sort of anasthetic due to size and location of polyp. The staff were excellent nurses really did look after me and the process was full of mixed emotions but it definetely was not painful. Please dont worry too much about the process its best to have it done and then know what the next plan of action is. The process wasnt too long. 1st hysteroscopy was only 10 mins and the one under epidural was probably around 30 minutes. Everything can be viewed on the monitor  if you wish. You are offered pain relief as well neurofen or paracetamol. I am on co codamol anyway so thats what i took before going into the theatre.

Please feel free to ask any questions. For me its the waiting thats more agonising

Best of Luck

Nikki

Hi Nikki 

Thanks for the reply 

That's reassuring to hear, how did they get in touch with you was it by phone or letter? I'm walking round with my phone glued to my hand scared in case I miss a call 

I hope I'm not waiting too long as I agree it's awful, just want to know when they're going to be and then I can mentally prepare for it

Thanks again 

Sally 

Hi Nikki 

Thanks for the reply 

That's reassuring to hear, how did they get in touch with you was it by phone or letter? I'm walking round with my phone glued to my hand scared in case I miss a call 

I hope I'm not waiting too long as I agree it's awful, just want to know when they're going to be and then I can mentally prepare for it

Thanks again 

Sally 

Hi sally

After having my scan i went to the GP for the results, thats when she said possible cancer and then  booked a hystersocopy through the GP system whilst i was sat there. It was fast tracked so i was booked in witihin 7 days. When i had the 1st hysteroscopy i must have been squeezed into a busy clinic because the consultant was jus rushing me, took a sample and confirmed there was a polyp.  She said the hospital would contact me for the 2nd hysteroscopy. 

A week later i got a phone call asking to come in for a pre op assesment for last wednesday and the 2nd hysteroscopy was done friday so within 2 weeks and arranged over the phone.

Yes like you i was glued to the phone. As you can see i am still glued to the phone because i am awaiting my results. No idea how they will feed back to me. Im at work but i just cannot focus, just waiting for the results. Can't even focus on half term activities. I had next week booked off for half term but walking around in a daze at the moment.

Luv nikki xx

Nikki I will keep everything crossed for you, it's no good coming out with all the usual platitudes of try not to worry as that's pointless, i just hope you're not waiting too long

I've just received a letter with a password saying if the clinic haven't rung me by tomorrow I have to ring the clinic, oh well looks like things are moving fast, which is good but scary 

I'm glad I found this forum, it has helped 

Big hug

Sally x

Hi Sally

Thankyou so much. Yes its good to chat to others in the same boat. When i look around me, everyone is so busy in their own world with their own issues. Where as i feel as though i'm in limbo, do not know which direction my life will be going in. 

A friend of mine said her biopsy took 10 working days, and I'm only on day 3 at the moment...........gosh a long wait ahead of me.

5 days after the hysteroscopy i can say i am still experiencing occasional pain in my tummy and still bleeding lightly, which should settle down in the coming days. 

I hope your apppointment comes through today, and if it dosn't please remember to chase them.

 All the best.

Nikki xx

Hi Nikki 

Got my appointment for a week on Thurs, would they be taking the biopsy on that appointment do you think?

Oh I'm dreading the wait for the results, it's going to feel like forever! 

I've only told my immediate family but I feel that I'm the only one that's keeping positive about the tests coming back negative, they're all thinking it's going to be bad news and it's really getting on my nerves! 

Hope you're wait goes quickly 

Sally xx

Hi Sally

That's good your appointment is sorted now. Did they say over the phone if they were going to do a hysteroscopy?  I am not quite sure how it works. I was referred by the GP straight for the hysteroscopy which is when they take a biopsy as well, so i'm presuming it should be the same for you, but not 100% sorry. Your GP or the person booking the appointment would have confirmed with you what the appointment is for.  Either way not long left now. I hope it all goes smoothly for you. Please stay positive, that's the only thing that will keep you going each day. I had a very low day yesterday, i created my own future with  "if this" and "if that" not very good thoughts at all. So Today i i was off work and thought no way am i going to let this ruin my present day. What ever it is i will deal with it. Sod everything im going to enjoy my time. So off i went picked up my son and my nephews from school and arranged a sleepover. They have kept me busy today and hoping to have fun with them all weekend.

My thoughts are with you and i hope it all goes well for you on Thursday. Keep me posted please. My results should hopefully be out end of next week. Even if the results are not what we desire, at least we know what the root cause is and deal with the issue before it gets worse.

Good luck and thinking of you.

Nikki xx

take care all

especially thinking of those of you awaiting your tests / results

xx

Thankyou snoopy47

Really difficult this waiting. Although i was very positive yesterday, today i jus feel so emotional, sat here crying my eyes out.......... feeling very alone

I had my total hysterectomy for endometrial cancer on 8th October. Everything moved at a fairly rapid pace for me as I had first gone to make an appointment with my GP for spotting about the last week of August. I thought it was my HRT that needed a review and so asked for an appointment for 2 weeks hence as I was going on holiday. The receptionist insisted however that I saw the doctor immediately and made me wait for 5 minutes until she found a free doctor. I was seen, examined and told I was being referred immediately, " just to be on the safe side". I went away on holiday as I didn't want to sit at home worrying and my brother in law went to my house every day to see if an appointment letter had arrived. The letter and an NHS text arrived about six days later so that I was able to come back for that easily. We were only holidaying 3 hours away and so it was easily done. I found it best to carry on in as normal a way as possible. The appointment was a " one stop shop" so I had an unltrasound, hysteroscopy and chat with the specialist nurse over about two hours. The Specialist Nurse who did the hysteroscopy said I had a fibroid but also did a biopsy. So in my mind it was sorted, a fibroid. I knew I had fibroids which was why I had been on HRT as an alternative to a hysterectomy in my forties. I loved my HRT and was never aware of the menopause. I got another appointment for an MRI , I just thought it was to assess the size of the fibroid and whether it could be removed as a day case or an in patient. In retrospect I should have made contact with the clinic to ask why I was having an MRI. About a week after I had the MRI I got an appointment to see a different Consultant gynaecologist. I Googled him to see if he was an oncologist but it just had him as a gynaecologist so I thought maybe it was just a share out of patients to get people through more quickly. I went by myself because I thought it was just feedback and options to deal with my fibroid.As I sat down with the consultant he started drawing pictures of a uterus and telling me where the cancer was!!!! What?? I thought it was a fibroid. I stopped him and asked if he was telling me I had cancer and he said, "didn't you know?". At that stage a flustered nurse dashed it and said I had missed a stage somehow and not been told. The upshot was I was admitted to hospital in another week for a total laparoscopic hysterectomy. I was out 24 hours after the op to recover at home. I have had minor problems mainly through wind and upset to bowels etc,. NB try peppermint tea but not peppermint oil capsules. Pooing peppermint oil is painful! I have also had a wound infection, currently being dealt with by the nurse at the surgery Everyone in the NHS has been amazing, I couldn't fault anything at all, my GP even rang up the day after discharge to check I was OK and to say I could phone or pop in if I was worried about anything. It came at a bad time as my daughters wedding was when I was 10 days post op. Fortunately both my daughter and I are well organised so everything was sorted and the day went well. I am now waiting for the histology reports to see if I need radio therapy. I have surprised myself how well I have taken the diagnosis. Obviously it was a shock, I never thought I was the 'cancer type'. A bit overweight but non smoker and only drinking at events or meals out, rarely at  home. Always busy and active with no genetic history and both 93 year old parents still alive and living independently with family support. I never felt ill. I do feel tremendously lucky. Caught early this cancer has 95% survival rating. I am retired and no children at home so my income / work not affected or pressure at home. I have a wonderful husband and supportive friends and family. My brothers have temporarily taken over doing parents errands etc. I can concentrate on just getting better. I really feel for women going through this who may be alone or have children or who are worried about the security of their jobs. I like to tell people I have cancer and joke about it because that normalises it rather than being  talked about in hushed tones. I talk about it openly with my teenage grandsons and even used it as a bargaining chip to get the last piece of pizza. ( My husband even decorated two rooms I had been nagging about , every cloud......) I believe if people are open then I think it makes it easier for others if diagnosed to just think of it as another illness, not a death sentence.

The one thing that has made me cross is that despite paying an HSBC critical illness policy for years I am unlikely to get anything as it was probably caught in time. They don't tell you that when you take out the policy, they just say cancer. If they only pay out when you are really ill that should be made clear. I think insurance companies are masters of very small print.

However.........My attitude is not to be melodramatic, accept what fate has delivered, follow medical guidance and just get it sorted. I have not really got much of a spiritual dimension to my life but am very pragmatic. Iam not a believer in ' miracle cures' of kale and cabbage diets, crystals, meditation etc. I think with all the cancer research that has taken place if those things worked they would be part of the treatment. I do understand however that for some people starting to investigate and implement alternative therapies might make them feel in control of a basically uncontrollable experience.

My personal advice to women at some stage of the process is, keep busy in appropriate ways for your stage of physical health, rest, eat well, think of all the good stuff in your life. Keep positive and cheerful for your family, no point making it harder than necessary for them. Internet search and read everything and ask questions rather than worry and wonder. Accept  the love and support of family and friends, trust your medical team . Finally make sure you get all those little jobs that you have nagged about done by concerned husbands and adult children while you still have some sympathy in the bank now you have cancer!!!

Keep your fingers crossed I am sorted and don't need radio therapy. Thanks if you have read this, it was helpful to write it. I don't do social media or stuff like that so it feels good to have got this off my chest

Hi, 

reading thru this post, I seem to be at a similar stage. I’m 58. Started HRT March & loving it. After 4 months I started bleeding but just thought it was HRT , had cramping too. Eventually went to my GP who gave me an internal exam & referred me for an abdominal & vaginal scan. The radiologist said I had a thickened lining & either a polyp or blood clot, she was unsure. My doctor rang Thursday & I’m now on the urgent cancer referral pathway. So just waiting. 

My question is, how many people get this far just to have a polyp or HRT causing the problems. I’m feeling quite positive that I’ve nothing truly wrong. Have told no one but my husband & sister. From what I’ve read so far, I get the idea 1 person in 10 will have cancer at this stage of investigation. 

Thanks for all the above posts. 

Good morning Kezzer,

I don't know if you did the read more bit as I am afraid I wrote rather a lot!

It was a bit of therapy I think writing it but you will see I am a bit further along than you as I am 3 weeks post op this coming Tuesday.

I think it is quite natural to think you will be one of the lucky ones and not an unrealistic thought. A couple of friends got to the hysteroscopy phase and discovered it was just a polyp which was removed there and then, job done.

When I was in the admission suite there were about 8 or 10 of us and only two of us had endometrial cancer. The rest had had the same initial symptoms which caused their referral but just had polyps or fibroids and they were day cases.

The Specialist. Gynae Cancer Nurse  Told me most of the people who come through the clinic just have fibroids or polyps.

Equally it would be a bit head in the sand to totally discount cancer but you just have to think about this possibility or deal with it as suits your personality. It might be you don't want to think of this possibility until it is confirmed.

I would counsel you not to be frightened or anxious if you do have cancer, just crack on and deal with it as guided by the Consultant. It isn't a death sentence nowadays. The NHSis marvellous and all the staff so kind and helpful. We have a new NHS women and young children unit at our local hospital which is fab.

You will feel rubbish for a couple of weeks afterwards if you have a total hysterectomy but just prepare yourself for being out of action as a way of taking control rather than letting your emotions control you.

I appreciate everyone deals with things according to their nature but personally activity rather than dwelling on it worked for me.

My husband and I did a big clean up, ordered a Tesco on line shop of ready meals( I normally cook from scratch) , cancelled a weekend away and got a refund, reorganised dental appointments and got everything done for my daughters wedding. I made sure my mum and dad's cupboard and freezer were full and bought new stuff for hospital and chose a book to read.

Sort out the fact you won't be driving or doing any demanding physical activity

I am lucky to not have too many responsibilities so was able to do these things.

In conclusion, good luck and hopefully it is just something minor but if not, it isn't the end of the world. Just take as much control as possible to alleviate feelings of stress.

Three weeks on I am fine. I am sitting in the bath with a purple hair colour on and looking forward to a visit from my newly wed daughter who is bringing my naughty lovely 3 year old grandson to stay the night so I can look after him when she is at work tomorrow. 

Purple hair? Well why not.

Susan