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

Hi Niki, 

i did read your post & your positivity is fab. 

I just wondered how many of the ladies above fared. I think the odds are good for me, as she possibly spotted a polyp. It is the uncertainty tho. 

Best wishes xx

Hi,

I'm a bit confused about who is responding to who in this thread as they don't seem to follow in the right order 

however

good luck to all and if anyone wants to know anything practical about post hysterectpmy from someone who has just been through it ( bowel expert!!!!!)  and I can help please e mail and I will  see if I can answer.

Susan

Hello - I was part of this thread back in April. After a visit to GP I was sent for a scan within a week and before I even arrived home after scan my GP phoned to say I was on cancer pathway and hysteroscopy booked for 7 days time. That procedure was brought forward and I was seen in four days - I convinced myself it was cancer. First hysteroscopy wasn’t successful as tissue from the thickened womb wall wouldn’t come away but they removed a polyp. All the time I was at hospital they kept talking about a mass in my womb. A second hysteroscopy was booked under anaesthetic the following week. The NHS was great but it always felt disorganised. I had to phone and chase things up all the time and letters were sent to my previous address. I had to phone for my results and after ten days they told me to call my GP; when I called my GP she said they hadn’t taken enough tissue but she was reading from my first hysteroscopy. I echo what we all say on here - it’s the waiting that drives you mad. The process lasted 11 weeks from initial GP visit until I got a letter to say biopsy was clear - just have a womb full of polyps and thick lining. I have not forgotten the fear of that time and have changed lots of things in my life since that time - have just come back from a holiday in Vegas! Cannot thank NHS enough for the speed i was treated even if it was a bit disorganised at times. I feel lucky that I was clear and that I’ve had a wake up call that this isn’t a dress rehearsal. My GP has hinted I should consider a hysterectomy in the near future as she feels the womb lining will keep thickening.  So I wish everyone in this thread well  ~ sorry if I sound evangelical but it was a big wake up call for me and my life since April has completely changed.

I’m going to unsubscribe from this forum as it’s for women  who are going through this now. I found the charity The Eve Appeal very informative during my 11 weeks and I would recommend it to anyone going through this process. Any weird changes after the menopause - always check with GP. I openly talk to all my menopause friends about bleeding/spotting now (must drive them up the wall) but women need to be aware of subtle changes and not just think it will go away or is part of menopause.

Hope you all have good news; fast treatment and treat yourselves well during the process.

x

hi niki

just thought id check in to see how youre doing and if youve had your results, i hope youre getting suport from people close to you

i went for my appointment on thursday, turned out that they didnt have the time to do the biopsy and it was just to make sure i was seen within the 2wk pathway, so im booked in for my biopsy on wednesday now, more waiting, then waiting for results, such fun!

trying to keep positive but it is hard and like you im finding myself very tearful over the most ridiculous thing!

hope youre ok

sally xx

Hi Sally

I was thinking about you last week wondering how your hysteroscopy went. I didn't want to keep asking:-).

Oh no!  that's such a dissapointment, after all that waiting they only called you in  for a chat. So are you now booked in for this Wednesday? 

I am still waiting for my biopsy results. The saying goes...... no news is good news !!!! I hope and pray this is the case.

I have booked an appointment to see the GP next week for my bad back so i will ask about the biopsy results.  

My immediate family are aware, however I am not openly talking about the situation, or my emotional state. Like I said, everyone is in their own bubble struggling with their own battles. I have good moments and then there are moments when i start planning for the weeks ahead, only to stop in my tracks, because i dont know what will be happening. Will I need more tests, will I need surgery, chemo,radio everything is uncertain and on hold!!! Then one thought after another takes me on a downward spiral. I can deal with things once i know. I just wish the results could be made available a lot quicker

2 weeks after my hysteroscopy I am ever so slightly spotting. No pain but im sure I do feel the mirena coil or maybe im just imagining it.

Please do let me know how it goes on Wednesday. Wishing everything goes well for you.

All the Best

Nikki