Endometrial biopsy positive

Hi Kath, I am so sorry about your diagnosis and the fact that you will have to have another op so soon after your other one, it's a shame they couldn't have done it all in one go., I had my diagnosis 5 weeks ago, about the same time as you will have to wait, it seems ages when you are waiting though doesn't it? I have just got back (half hour ago) after having had pre-op tests done, will have to go again on Friday for a second blood test to get my blood cross-matched in case I lose a bit in theatre.

As regards support, my GP is a complete poppet she is in touch sometimes twice a week, she phoned yesterday to see how I was coping as I suffer horrendous panic attacks, I think she is worried I will do as I have said in a previous post and disappear to a desert island somewhere never to be seen again lol! I was told today that I will probably be first on the list on Monday so at least they won't keep me hanging about too long. I have found the lovely ladies on this website have helped me so much, at least you know that you are not on your own so please any time you feel the need to 'talk' don't hesitate, send me a personal message if you want, you say your cancer is a 1c? mine is a 1 so although I don't know exactly how you are feeling I at least have a very good idea. I have also been back and forth to the hospital over the past 5 weeks as I was first of all referred to another consultant who after finding out I have cancer had to refer me to someone else as he doesn't deal with endometrial cancer so I have had the opportunity to ask lots more questions etc. What is your GP like? perhaps you could ask if you can talk to a cancer nurse at the hospital, everything seems to have so fast, I was fine one day, then I wasn't.

Keep your chin up and remember please talk on here as often as you want or email me direct any time. xx

Hi Kath,

Hang on in there. I felt like you, that I didn't have anyone to talk to about it, and I had no contact at all with my GP, so I felt very alone. My cancer was a 1b of the endometroid type. I was told that if I had any questions to ask I could contact the "specialist gynae nurses" at my hospital and I was given a phone number to ring. On the two occasions I called no-one answered, so I searched online. There are some forums on the Hysterectomy Association website:

http://www.hysterectomy-association.org.uk

and you could also try the Macmillan cancer website

They might have someone who will talk you through things.

I too felt that I was left "high and dry", and with no-one to talk to about my diagnosis. GP was just not in the picture at all.

Thank you phoebewhite.  I opted for cyst, ovaries and fallopian tube removal because I had difficulty understanding my options because I couldn't understand what the consultant was saying to me - he had a very strong accent.  I went back a second time, saw someone else, and this was no better.  I was told they couldn't do a biopsy at my hospital and it would have to be sent elsewhere, so I opted for minimal surgery, which on reflection, was the wrong thing.  I will pm you if that's OK?

xx Kathy

Thanks for your help informed, and for the link.  My cancer is also the endometroid type, but with 1c they don't know if it has spread away from the ovary, hence now having the total hysterectomy.  I have rung the Macmillan helpline this afternoon and they were helpful, but until I have the op and biopsies no-one can be sure what is going on.  I will pm you if that's OK?

xxxKathy

Dear Kath, you poor, sweet lady. My heart goes out to you.❤️ We are all here for you. I haven't had cancer but it has,like us all, touched so many people we love. I can help with any worries about your hysterectomy. Had total hysterectomy via laparoscopic and vaginal op on the 1/12/14. Here for a chat anytime! What made you have your tubes,ect removed? Have you got family around to support you? Sending all my prayers and love your way x💜💛Debbie 

Hi Kathy, how are you today? Have you been to docs yet? hope he/she was able to reassure you a bit. x

Hi Phoebe

Nice to hear from you.  My doctor's appointment is at 4.20pm today, so will let you know how it goes.  I am feeling a little more positive today, as the nurse rang to say the doctor said she is happy for me to drive now, so I have had a little pootle just locally to the shops, and feel so much better for getting out, plus the sun is shining!

How are you today?

xxxxKathy

Feeling very nervous for most of today, I seem to jump from feeling really good about Monday to feeling really teary and depressed very quickly, I burst into tears twice at the hospital yesterday, just couldn't stop it and again whe I got home, I suppose it's the hormones.

I know how you feel.  I was very down and tearful yesterday, but today I feel much better.  Who knows what tomorrow will bring.  You are in my thoughts and prayers.  Please keep in touch.

xxxxKathy

Thanks Debbie.  I really appreciate your support.  I had ovaries and tubes removed because I had a cyst which they didn't think was anything sinister but they weren't sure.  They told me that I could have everything done but the frozen section would have to be sent to another hospital because they couldn't do it at mine (although, to be honest, I found it very difficult to understand the doctor I had).  I freaked out at this and decided I didn't want to be under the anaesthetic any longer than necessary.  As it was I was under for nearly 4 hours, so I suppose they could have done the biopsy as well.  It's all been very upsetting, and now even more so because I have to have another op.  I'm sure the pros and cons were related to me but I couldn't understand (and nor could my husband) what was being said to me, so I based my decision on the few words I could unerstand, which, in hindsite, was the wrong thing.

Another website you might find helpful (where would we be without websites?) is Hystersisters I have just joined, it is in USA and dedicated entirely to ladies having or having had hysterectomies, it is brilliant, very informative, worth a look. Let us know how docs appt goes. P x

Thanks Phoebe. will have a look.  Just off to the doctors now.  Are you in the UK or USA?

Physically in the UK mentally on a desert island at the moment. LOL!

Ah yes, I'm with you on that one.  I can hear the waves lapping and birds singing as I type.  The sun is a bit warm though!

I have been to the doctor this evening who was quite reassuring that things had been caught early and I had a good chance of getting through this OK.  The chemotherapy is just to make doubly sure.

I am thinking of you and thank you for your support, which has been a real help.

xxxKathy

Glad I have been able to help a little, talking to you helps me also. Glad your doc has given you some reassurance.

Going back to my desert island now , Phoebe x

Enjoy!

Hi Kath, glad that the Dr was a bit more sensitive today. I used to make notes on my phone for Drs visits so I wouldn't forget what I was going to ask him. Must be so difficult if you can't understand him! ( accent?)  try and keep happy and busy, these weeks will pass quickly and you'll be on the road to fitness again. Chat again soon Deb x💜

Hi Phoebe, things to do this weekend! You and hubby go out somewhere nice for lots of meals! Go somewhere you haven't been, go shopping for each other for Christmas! I hope I don't sound bossy but that's what my hubby did to me weekend prior. We are real home bodies but he had us in Sydney on the harbour, Manly shopping ( he NEVER shops lol ) somewhere on Northern beaches for lunch and I'm from Newcastle! Hugs Debbie x💜

Thanks Deb.  Good idea about the phone.  It was my doctor I saw today, not the hospital one, and she is lovely.  Sorry for the confusion.  Thanks for your support and best wishes.

xxx Kathy

Hi Debbie, I don't think you are bossy at all, afraid my hubby isn't wired the same way as yours , he is very caring in his own way, he bought me a lovely huge bunch of flowers yesterday. Do you mean Newcastle UK or Australia? my family on mums side are from Newcastle UK, hubby has family in Bright (Victoria), always think that is such a lovely place name.

Hi Phoebe, I'm in Newcastle, Australia but I was born in Victoria North of Bright at Kyabram. Your hubby is a keeper! Wishing you all the best for mon and can't wait for your speedy recovery xox Debbie 💜

Thanks Debbie xxx

wishing you all the best for tomorow, we''ll all be waiting to hear from you once you get home and feel up to it. xxxx

Thanks fibroidy, can't wait to get it over with now.

Hope you are ok? Phoebe xxx

Thinking of your for tomorrow Phoebe. xxxxx

Have you had to do any bowel prep today

Kathy xx

No, thankfully, did you have to do that?

Yes, dreadful.  Senacot and liquids only for 24 hours! 

xxxx

All I had yesterday was clear liquids, that's all I could manage, first time I haven't cooked a Sunday dinner for a very long time.

Hi all, am still in one piece.....well almost, no pain to speak of, just had catheter out thank goodness and been walking about so all good. Will post again when I get home Thursday, xoxox to you all.

Phoebe

wow, good to hear from you. so happy its all gone well. xxx

That's great.  Look forward to hearing from you later in the week, if you feel up to it.

xxxxxxxx  Kathy

Great news and good to have all that done and over with. Hope you are getting plenty of treats from family, and some peaceful rest too. Best wishes for your recovery.

Hi All, I am home again thanks goodness all went well, I have had absolutely no pain whatsoever, nurses kept offering anelgesia but I didn't  Ineed any, have to wait now to see if the cancer cells have gone anywhere else but that will be another bridge to cross if and when it happens, at the moment though I feel really good apart from being really tired, hospital beds are ok but they are not hat comfy, though I love the way you can now raise the top half for your head or the bottom half to raise your legs. Informed, did you also have an epidural along with the GA? I did, that was a weird feeling , the anaestetist was a lovely guy (Australian I think) I called him a sadist at one point when he sprayed some freezing stuff on my back and chuckled while he did it, he replied 'yes, I love my job', he really put me at ease.

Anyway I've rattled on enough for now, anything anyone wants to know please ask, and thanks again for all of your support over the past few weeks.

Speak later. Phoebe.

No, I didn't have an epidural. Just the GA straight into the back of my hand, and I was out like a light. Didn't even experience the recovery room afterwards. I first became conscious again when they were wheeling my bed back to the ward afterwards down a lot of long winding corridors. When I did open my eyes in the ward it was spinning round and round for some time afterwards. So glad you had this done and over with before Xmas. Enjoy your convalescence!

Hi Phoebe, I'm so pleased for you!  You sound so well!  When you feel like answering, what sort of incision did you have (if you don't mind me asking) and did you have a drain afterwards?  How long were you in hospital?

xxxxKathy

Hi Kathy, I went out like a light this afternoon, so nice to get back in my own bed. How are you feeling? any news on 2nd op?

I had a vaginal incision and 3 10cm incisions in my tummy for the laparascope and camera etc, no drains afterwards just a urine catheter and a drip giving me fluids for about 12hrs, I had a oxygen mask in the recovery room and I remember taking it off only to have it put straight back on again my recovery nurse, this game went on for a good 5 minutes, it was quite funny, then I heard someone say, she doesn't like masks, I woke up later with the oxygen thing with the 2 prongs up my nose, I had oxygen for about 24 hours.

Hi Phoebe. I'm glad you're resting.  I know what you mean about getting back in your own bed.  As soon as I got home I relaxed and started to feel better almost straight away!  How many nights did you have to stay in hospital for?

It's very encouraging that you have no pain and feel so well!

My second op is 9 January.

Hi Kathy, I was in for 3 nights, I was ready to come home but apprehensive as well, did you feel like that? I think you get home and you are somewhat on your own, in the hospital you only have to press the bell if you don't feel too good and you know that all the right people are there, my hubby would flap round like a headless chicken, he is one of these men who either have to be nagged to do any small thing or as at the moment he is asking every few minutes (seems like) are you ok do you need anything? BLESS!

So you have another 3 weeks, it's the waiting that is the worst thing I think, when I first saw my consultant, if he had said lets take you to theatre now I would have said yes. Don't forget we are all here for you. Phoebe xx

Thanks Phoebe.  No, I couldn't wait to get home - I had a horrible experience in hospital with the care (lack of) I was given, so am dreading  going back, especially as they have said I may have to be in for 5 - 7 days (they might have to do a big incision).

What did you do to occupy yourself in hospital?

xxxKathy

I'm so sorry you had such a bad experience, I feel a bit guilty about going private this time and our savings are quite diminished now (we don't have insurance) but with my other problems I had 2 choices, 1/let nature take it's course (not really an option, or use our pension fund early so we opted for the latter, oh well at least the government will be happy I didn't buy a sports car or something with it LOL!

I had TV in my room and took my Kindle in, that said I really couldn't concentrate much on either, I watched the birdies out of my window, did the Daily Mail crossword and walked around the room from time to time, by yesterday I was bored out of my brain and if I could have escaped out of the fire escape I would have done, when I knew I was going to this particuar hospital I got quite excited about it and was a little disappointed I was only going for 3 nights but when it comes down to it, as the saying goes 'There's no place like home!' :0)

Don't you mean that the incisions were 1cm across? I had 3 which were only about 1 cm long with 1 stitch in each one. I'm still a little tender in the abdomen 7 months on. Hope you are keeping well. You must be so pleased it is all behind you now.

LOL yes 1cm, silly me, I just looked at my post must have been going cross eyed when I did it !

I am feeling really good thanks, I was told that as I don't have any pain to be extra careful not to do too much as I obviously fell that I can, hubby won't let me anyway, won't be easy though when you see things that need doing, especially with Christmas next week.

Please don't feel guilty Phoebe.  If I could, I would do exactly the same.  I'm just hoping I have a better experience this time.

PS You should be in bed asleep now!

Sleep tight.

xxxKathy

Am in bed just not sleeping.....zzzzzzzzzzzzzzzzzzzzzzzzzz

xx

Thanks Informed.  Yes, it's the same for me.  I rang the specialist nurse twice, nobody there.  The third time another nurse said she would ring me back.  But all this took a day and a half, and I needed answers.  I tried again, twice, this week, and still no-one there.  I didn't leave a message, but tried Ovacome who were very helpful.

Hi Informed, if you get a minute could you let me know if you had any itching around the small incisions? 1 of mine is driving me mad (not all of the time), I have been bathing with warm salt water and trying desperately not to scratch it, apart from this little annoyance I am ticking along really well thankfully, bit windy occasionally and my tummy looks like I am 9 months pregnant, how much gas did they pump in for goodness sake, all my tops are a bit tight, the strange thing, although I look bigger I am about 2kg lighter, been managing the Heperin injections ok, last one tomorrow though, goody. Hoping to get the histology results back next week, did you have long to wait for your results?

Thanks. Phoebe.

Oh absolutely, they itched like mad, and yes I did look pregnant for a few weeks, but then I did look a bit pregnant before, which is a symptom of the cancer. I'm very glad to have a bit less bulge in front now. The worst for me was the numbness in the top of my legs - like ant bites they would make me jump. I still have this numbness 7 months on, but no more of the ant bite sensation. I used to wear trousers all the time, but now I have ditched nearly all. I hate tight waistbands over my navel, which is still a little tender, and bought pants, which didn't interfere with any of the scar marks. 

I had my op during the summer, so got away with loose fitting dresses, which were most comfortable. On my 10th day post op I went to the local swimming pool, and 3 weeks later a dip in the sea! Then it was back to work! 

Surgeon told me right after my op that it had come away cleanly, and he was fairly sure there would be no further treatment. Results came about 8 days later, when he phoned me at home to confirm this.

I had one check up about 2 months later, when he gave me a full discharge, said to report any kind of discharge or spotting to them, and they would fit me in.

However, being told you have cancer is such a terrible thing, I think that I am recovering mentally more slowly than I am physically. I still worry about a re-occurence all the time - keep expecting to find a recall letter in the post

Hi thanks for that, I'll persevere with the salt water bathing as it does help a little. I don't have any numbness so have been lucky there, it's funny you say the about the tummy thing before the op, I had a bit of a swollen tummy beforehand, it only began after the anaemia had settled down, I didn't know it was a symptom of the cancer, it makes sense I bought a pair of support pants to hold my tummy in I thought I had just put on weight which I was really rattled about as I hadn't eaten too many naughty things, I'm vegetarian so don't eat animal fats, it all makes sense now. My surgeon told me the day after my op that it hadn't been as straightforward as he hoped because I had my appendix out as a child  and my gallblader later and there was a lot of scar tissue to cut around but hopefully all will be clear. You say you find it uncomfortable to wear anything around your waist? you may find that this will go on a lot longer, when I had my gallbladder out (keyhole) I had to wear elasticated waistbands on trousers (I'm not a skirt girl) for a couple of years afterwards, and now I have another hole in the same place so I get to do it all again.....YAY!

I think the itching around the wounds is a sign that healing is taking place, so it is good to know it is healing even if it is a minor inconvenience. I found the leg numbness much more of a problem, so it's good you haven't got this.

It was my first operation so a real "baptism by fire" for me! It was all virgin territory for the surgeon!

I read on a website somewhere that the swollen tummy is also a symptom, but I cannot find the website now. In it the woman described how she found her trouser waistband getting too tight, and tummy was in the way, when she was putting her shoes on. I definitely found this, I was really beginning to look quite pregnant, and was getting some sideways glances from people at work. I'm sure that being only 52 they thought I might be pregnant! I noticed tummy getting in the way when putting my shoes on, and also noticed when lying in bed reading, that my stomach still stuck up as a bulge instead of falling flat, but hardly getting any symptoms and feeling perfectly well, I too dismissed it as middle-age spread. With the spotting, I noticed that this only came when passing a stool, and NEVER after intercourse, so I think the information on this site and many others is wrong. I thought at first it may be bowel cancer, but ascertained for sure that it was coming from the vagina. I never had any pain at all, and only ever had the one heavy bleed. I did once have a small amount of watery, acidic discharge, which made me very sore and uncomfortable, but once I'd showered this away I was fine again.

All this reminds me that we did think of setting up a list of all our symptoms, so other ladies can read them. The information on websites is very vague isn't it?

Yes, I came out of hospital looking like the Michelin man, and very puffed up with fluids and air, but it all falls away, and I'm glad I've got rid of my bulging tum.

Now, where's that box of chocolates we've just opened....