Recently diagnosed, total shock.

Hello and welcome to our little corner of the community JC9, getting a diagnosis like this does really shock us even when we are already prepared for the possibility that its bad news. I was 37 at diagnosis and had a hysterectomy and everything removed and went slamming into the menopause and I admit that did take some getting used too, the hot wets or freezing cold next ,the low tolerance i have now to things. But I wasn’t allowed to go on HRT due to being high risk breast cancer, but I know some who have been put on hrt and it helps them. The first thing to know is because of all the different stages and treatments people have had there is certainly a wide variety of knowledge and the ladies are fab and i am sure will come along soon to share their experiences. I for example only had the hysterectomy as treatment which certainly was a big weight off my shoulders. I took up art as a coping mechanism and I found being creative helps keep my mind distracted from the shock, anger and what next ? The important thing is to know your not alone lots of support here and I hope you also have supportive friends and family too all this really help to deal with everything. One advice i was given that I didn’t appreciate at the time how valuable it was was to take each day and step as it comes, its easy to go worrying about everything before you know what the situation is etc. I can say I found the surgery to be no where near as bad as I thought it would be, it was part keyhole part abdominal because i had a bulky womb so they did a little incision from my bely button down but I healed very well, it’s important to realise the internal healing takes longer then we think sometimes and i know why its important not to stretch or bend down any more then you need too. If you live alone making some meals up and freezing them comes in handy as your energy will also be something that will be reduced for a time as your body takes lots of energy to heal so just having simple easy to cook meals really helps. Also a cushion or pillow is good when your in a car with the seatbelt one as it keeps the belt away from you so its a bit more comfortable, plus helpful for that or a towel to hold against you if you cough a few tips I never thought of but really helpful. Little walks are great for while you recover from the op but start small and build up again your energy will take time to get better and stronger but that’s perfectly ok its all about healing. We are here for you ask away questions we will all do our bit to help you.

sending gentle bear hugs  

Hi, could you just clarify please as I wasn’t sure from what you said - have you actually been told you have cancer? 

Hi yes unfortunately I have been officially diagnosed 

Bless you - have you been given a possible/probably grade and stage? I’d recommend calling your CNS on Monday to have a chat about how you’re feeling. If you’re anxious over the weekend the Macmillan helpline is fantastic - open 8am-8pm and the people are lovely. 

Thank you for the advice. I have already been into the helpline when I felt lost and alone last week.  Just shortly after posting I received  a call from a lovely surgeon who went through everything with me. Apparently it is a Grade2 and they aren’t sure of the stage but from the reports so far they think it’s early. The Fallopian tube which was removed and deemed initially okay apparently has some question marks and this was also clarified rather abruptly by a call I had from pathology telling me outright it had the type 2 in it also. I guess the positive news so far is that the MRI showed nothing so it might be considered early. 
i am to have a ct on my chest and they will also check the lymph’s whilst in surgery. Now I have to stop myself checking every ache and pain. And wondering if it’s something! 
As I am fortunate enough to be under a private hospital the consultant is going to have all tests and scans checked by his people. Surgery is going to be a week Monday 31st Jan. 
Thanks again. Xx

Hi JC9, so sorry to hear what you are going through.  

I just want you to know so you can ask the relevant questions at the hospital for yourself.  I was told I could not take HRT due to my endometrial cancer being driven by oestrogen. 

I presume only after your surgery will you find out what type of endometrial cancer (I am not referring to the stage nor the grade but the type of endometrial cancer) it is that you have and whether the risk of an oestrogen only HRT is low risk for you.  I know the MacMillan nurses said I would find that information out after the hysterectomy and my consultant advised me against HRT unless the quality of my life was so awful that I would then benefit from taking HRT despite the risks. 

I am a similar age to you (I'm 49) and was also pre-menopause when I had my hysterectomy (October 2021) and I am not experiencing menopausal symptoms.  Perhaps because I am so near to the average natural age for menopause (51) so just a thought but rather than immediately taking HRT (or natural alternatives that mimic oestrogen which I have also been advised against by the hospital) it may be worth at first just seeking how your body reacts after your hysterectomy.    

Wishing you the best xx 

Hi Sarah16

Thank you so much for this - every little bit of positivity means a lot.  Mine is estrogen receptive so this advice would fit my circumstances regarding the use of HRT. The consultant said the same that if if was desperate and in need then it could be reviewed..

Can I ask if your moods have been affected (assuming not as you said no symptoms) also how long did it take to get over the op? Having just had laparoscopic surgery two weeks ago I am thinking it will be a similar thing. I have been told I will be fit to travel home on public transport after 2 days (hospital is in London so I need to get home after)

many thanks again. Xx

You're very welcome and if you have any further questions please do ask. 

Before I come on to my recovery please do check that you are allowed to travel home on public transport.  At the hospital I was at they did not allow this in case I had any complications following my surgery it meant I would be allowed back on to the ward.  If I had used public transport I would not have been allowed to return to the hospital so soon.  Could you not get a taxi or could a friend take you home in their car?  Your long term health must come first.  

My moods have not been affected at all, no brain fog, no hot flushes.  I am going on lovely walks with many friends now and feel perfectly normal in my head and with my moods.  I occasionally am a little bit warm/hot in bed when I wake up in the morning after a good night's sleep but that is no different to prior to my hysterectomy and me probably not needing my little blanket on top of my duvet.  I genuinely mean it I am not experiencing any menopausal symptoms.  This may also be the case for you due to your age and there is far less oestrogen in your body so the loss for you will not be as drastic as say a woman who was 35 years old.  

In terms of getting over the op I got over it extremely quickly.  My operation was on a Thursday afternoon and I showered on my own (including washing my hair in the hospital on the Sunday and Monday morning) and left the hospital on the Monday afternoon.  

The key to recovery, in my opinion, is drink as much water as you can whilst in hospital (take some spare cups with you in case you find the water jug too heavy to pour from and some drinking straws) and walk around as much as you can too whilst in the hospital but if you're only going to be in for two days the focus will be on walking when you are at home.  For the first two weeks this was in my house so that I was safe to return to the hospital in case there were any complications.  

I saw my consultant four weeks after my hysterectomy (when she told me about not taking HRT and also gave me my diagnosis and prognosis) and she said how well I was recovering.  In the report she wrote to my GP she even said I had 'recovered extremely well' to literally quote her.  As soon as I left the hospital I had no trouble getting up the stairs in my house.  The one thing I was very careful not to do was to lift anything heavy and I chose not to drive for eight weeks to be on the safe side. 

I should add that as well as having stage 1a (grade 1) endometrial cancer I also have stage 1c (grade 2) ovarian cancer but my consultant has said the treatment for my endometrial cancer was the hysterectomy so that may be all you need. 

My ovarian tumour ruptured during my hysterectomy and I was told the 'belt and braces' approach was for me to have six rounds of chemotherapy (Carboplatin).  I mention this as I truly hope you do not have cancer that has spread but again far better you have this information as my cancer had not spread but was two separate cancers.  It is important that if they find cancer elsewhere it is properly identified as to whether it is endometrial or ovarian cancer.  I think my circumstances are different as they thought I might have ovarian cancer (which I do) whereas with you they have identified endometrial cancer (and this was not suspected for me due to my womb lining being normal).     

I hope this helps but please do ask me if you have any other questions xx 

Thanks for pointing our about the public transport issue - I hadn’t thought of that. It was the consultant that suggested it! I will check again to make sure. It would be easier if I can get the train as the journey through London would be lengthy and probably more uncomfortable. I intended to get a cab to a main line then it would be just 30 min journey. 
I am still in shock about all this - just two weeks ago I was told all normal and expect an uneventful recovery…then wham! Every step of the way I have been reassured by scans and MRIs and the expertise of an experienced surgeon. It certainly didn’t look sinister. I am huge worrier and find. It difficult to think positively. The surgeon says all signs are it’s early but obviously they need to check. Also, I I am dreading being told bad news. I am preparing myself for further treatment for they Fallopian tube but the surgeon said possibly but not to worry too much about that.

Can’t imagine feeling normal again - I struggle with the C label. I had a skin cancer last year too. I was luckily it was a BCC so it was removed with no further treatment - well apart from the skin graft which was a lengthy healing process and left me with a small bald patch which I can easily cover. 

Thanks again for your advice!
xx

JC9, having myself  had a hysterectomy *today*, I would advise against trying to go home by train and I honestly don’t think the hospital would allow it. After a hysterectomy you mustn't lift anything heavier than a very light kettle for several weeks after. Even if your overnight stuff was in a suitcase with wheels you’d still need to lift it up and down steps and kerbs and that would be a total no-no. I brought not just a small suitcase on wheels, but a sports bag, my own pillow and a handbag!  I got a taxi to hospital (just under an hour’s journey) and will get a lift home. A nurse or porter will accompany me and carry my luggage to the car as they will want to make sure i am “handed over” to someone, They will not want (allow?) someone who has just had a major op to travel alone. It might be worth asking your  GP about hospital transport? My GP arranges this for patients if needed.