Mid 50s, post menopausal just diagnosed with endometrial cancer

Hi Paeony and welcome to our little corner of the Online Community. Here you'll find a lovely group of supportive ladies who have all been exactly where you are now. A possibility of cancer diagnosis brings all sorts of stress and fears and if anyone can hold your hand and reassure you we will. We're all at the start, in the middle or the end of what can only be described as a roller-coaster ride. The ride no-one wants to get on.

I received my diagnosis right in the middle of the pandemic and had to attend all my scans, tests, consultations and treatments alone. My husband had the emotional empathy of a plank (That's being unkind to wood!) but I found this forum and particularly the ladies here fantastically supportive, they were my mainstay during my journey and as, as result, I decided to become a Community Champion.

If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer I found it invaluable in my journey. 

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

Sending you welcoming hugs, B xx 

BTW I forgot to mention it might be a good idea for your husband to take a look at the Family and friends forum. You're going through enough without having to prop him up. I remember reading here one ladies friend's response to when she said she had cancer was a "Poor Fred" or whatever his name was! I was astounded.

We're here to prop you up during this emotional time and be your support. I'm sure the other ladies will be along soon to welcome you, then you'll definitely know you are not alone in this.

I know you've put a bit about yourself in your profile but I'd copy and paste this, your first post, as it's very informative.

Take a look at my profile by clicking on my ID. I was also stage 1a grade 1 . Are you having Full abdominal or Keyhole? then we can come back to compare notes to answer your questions and what questions you might ask your consultant.

More hugs coming your way, Barb xx 

Hello Paeony,

Welcome to the group, though I'm sorry to hear of your diagnosis.  I  was myself diagnosed with  stage 1A grage I endometrial cancer back in July 2019, this was a big shock to me, I  have two sons am not overweight at all, I  think maybe having a late menopause at 56 was maybe a factor, I  was 58 when I  was diagnosed. At the beginning of August following an MRI scan I  had my hysterectomy by keyhole and was in hospital for only one night, I  recoverd well with no problems.I  had to have injections for two weeks to prevent clots but hardly any pain at all, I  was able to take short walks a few days after coming home. About 12 days later I  got a call to confirm the diagnosis and that no further treatment was required. Following a visit to the consultant around 5 weeks post surgery I was put onto the patient initiated follow up,  where I just call them if I  have any problems.

I think I'm still coming to  terms with being diagnosed with cancer, it was a tough year for us as my dad also died and the day before my surgery my mum was diagnosed with breast cancer at 79, whereas there'd been no history of cancer in the family before. 

Being a member of this lovely group has helped a lot, there's always someone around to answer questions and lend a helpful ear.

I wish you all the best with your  treatment.

Hello Paeony, welcome to this forum. You sound like you are still in the utter shock stage. I found it so difficult to take it in when they said they had found cancer cells in my biopsy. I was utterly unprepared for the diagnosis, as I thought my appointment was to remove a polyp. Like Barb, (Mrs BJH) I was diagnosed last August and had to attend all my appointments on my own.

Please, do NOT beat yourself up, thinking if you had done this or that it wouldn’t have happened. Who knows why this happens to any of us. Guess it’s just the luck of the draw. Do focus on the fact they have caught you early on.

Usually once they have done scans or biopsy the Multi Disciplinary Team will discuss a plan of action and treatment and your consultant will discuss this with you. Hopefully you will have keyhole surgery, as the recovery time is much quicker. After the op all the "bits" get sent to the path lab for examination and about two to three weeks after the op they will tell you the Grade and Stage of your cancer. They then advise if any further treatment is necessary. I had keyhole surgery and I was in hospital for two nights, simply because they need to know your bowels are working after the op, sometimes the anaesthetic throws them into shock! Some people on this forum have only stayed in for one night. Afterwards,  because I was Stage 1b, I was advised to have three sessions of brachytherapy ( internal radiation treatment) to reduce my chances of any recurrence down to about 8%.

Recovery time for keyhole surgery is about 12 weeks, you get a little better each day. My consultant said you can double that time for open surgery. I was very lucky in that I was fit and healthy beforehand so bounced back very quickly. You just need to be kind to yourself and take things very easy at first. 
I'm not surprised you are scared the depression is edging towards you. But maybe you can show your husband what you have written above so he realises what is going on and how your emotions are in turmoil. He is probably feeling the same but doesn’t want to upset you, just as you are trying to protect him. This is one of the worst points of the journey, the waiting and not knowing. But things move very quickly usually from now on in, so try not to worry ( yeh, right.,) and just take one step at a time. Wishing you all the best of luck,

Viv.

P.S. Read back through some of the posts to see what to take into hospital when you go in....the ladies on here have got some really good recommendations, starting with baggy knickers!

Thank you Barb, Carolina and Jigsaw, I appreciate your replies. As yet i do not know how they will do the hysterectomy, though I’ve been told that whenever possible they try to do keyhole but i wont know more until i meet the consultant surgeon, whom I haven’t met yet and even then I’ve been told i might not know until i come round after the op, Previous surgery for my ectopic might have left scar tissue. One of my current worries and I know i cant do anything about it, but it seems that a Biopsy Grade 1 seems to often turn out worse when the histology comes back after the op. I’m feeling uncomfortable in my stomach which might be stress or anxiety or psychosomatic, but its worrying me. I’m just trying to stay positive and doing things to distract myself. Its all very exhausting though. Thank you again Xx

Hello Paeony,

I want to tell you straight away that I, too, am in my mid-50s and was postmenopausal when diagnosed with Stage 1a womb cancer a few weeks ago. I just had a laparoscopic full hysterectomy plus fallopian tubes/ovaries on Tuesday. So I am one week into recovery. I also never became pregnant--but my baby is my cat. :-) Oh, and it also sounds like our husbands are very similar.

Next I want to tell you that you came to the right place here because you are obviously not alone. Specifics vary but I can tell you what my experience was like with the procedure. Here is my story and it might be a bit long--but I want to answer your questions as I had so many as well....

I went in to the hospital at 7am and practiced deep breathing and some yoga in the waiting room. My surgical team came in and talked to me, and the doctor answered all of my questions. I had already met once with a gyno nurse a few days before, so a lot of my questions had already been answered. My tip for that is that anytime you have a question, write it down. I'm a school teacher, and I always tell my students that there is no such thing as a dumb question! So ask anything! I read the booklet they gave me front to back and highlighted certain areas...the back of the book actually has a page for writing down questions, so I did it. Then when I was with the doctor that morning, I just read the questions to him. I think I would have forgotten to ask most of them if I didn't write them down. I asked a lot, and no one made me feeling stupid for asking anything. :-) The anaesthesiologist also came in to talk to me for a bit, and answered more questions as well.

I was wheeled into theatre around 8am. They put a cannula into the vein on the back of my hand and I started feeling super woozy. I kept asking, "Is this normal?" (more questions!) and then the , and the whole procedure took less than an hour, apparently. Then the general anaesthesia took effect and the next thing I knew, I was in my hospital bed. I don't even remember waking up. A nurse put a tube at the base of my nose so I could breathe easier. I think that felt nice. I probably slept more....in and out with nurses coming in to check vitals. When I woke up, I had anti-thrombosis socks on and something strapped around my calves that was alternating pulses from one leg to the other--felt like a massage. I had a catheter as well, which didn't hurt but was strange, obviously. They asked me what I wanted for lunch and then brought me soup, which was horrible but I wolfed it down! The surgical team came in to see me in the afternoon, and the doctor told me that everything went smoothly--very smoothly--and the whole procedure took 35-45 minutes. He told me to wear my socks for 4 weeks (the nurses told me 6!) and not to have sex for 10 weeks (last thing on my mind). 

The nurses wanted me to sit up after I ate, and they helped me do that. It hurt a bit but not so much that I couldn't do it. I just did what they told me, and moved very slowly. At some point they helped me stand up and walk around the room, then sit in a chair. I couldn't go far with that catheter! It did feel a bit weird that no one could visit me, but I had my phone so talked with my husband, my parents and texted a few close friends. My body told me when it was time to go back and lie down. My blood pressure was VERY low so a nurse was taking my stats every 90 minutes all night long. I didn't sleep much, but it didn't bother me.

I was attached to a morphine drip with a remote control so I could give myself a boost anytime I needed it. I remember the first time I felt aa twinge of pain (early evening) that was like a little stab in my lower abdomen--that pain was from the gas that they pumped into me during the surgery. A nurse told me the week before that morphine would do nothing for this pain, which to me was the worst of it. The only thing that works is MINT. In my little goody bag, I brought mint tea, mint candies and mint gum. MINT WORKS--so this is the most important advice I can give you--get some! I also requested mint oil at the hospital, which they gave me to mix with hot water. It REALLY helps. You will want to pass wind--don't hold back--let it out. The more I farted or belched, the better I felt. Let it out, sister! :-) No one will bat an eyelash, so don't be shy about it, either. I only pressed my morphine button 4 times (and then "one for the road" as they were about to take it out the next morning!). 

The night nurse gave me a shot in my tummy at 10 am. It really didn't hurt--just stung for about a minute afterwards. Then he took the catheter out, which did not hurt at all. He just told me to breathe deeply in and out and then gently slid it out on my exhale. So don't worry about that. I felt free after that! I had to pee a certain amount of mls for analysis--I had a student nurse in the morning who didn't tell me that, so I dumped out my first pee--don't do that--it will delay your leave time! I had to start all over again and was not dismissed until 6 pm. I asked to stay longer because I was nervous about going home (and having stress added by said husband), but they convinced me I was better off at home because of the danger of Covid-19 and respiratory infection. The ride home was a bit bumpy.

Once home, I was straight to bed. A nurse comes to my house every morning to give me a shot in my tummy. They want me to do it myself but I just can't bring myself to do it. I have a tiny bruises where I've had the injections, but again, they really don't hurt. My wounds are healing well and really there is no pain there, either. I took codeine once a day for the first two days only, then switched to paracetamol because 1) codeine can cause opiate addiction and 2) can also cause constipation (I'll get to THAT in a minute). I take a daily shower with hot water (it kills infection) and dab dry my wounds (important to keep belly button dry). I listen to my body, which always tells me when to walk, when to sit, when to lie down. :-)

Now about passing that first bowel movement: here's what worked for me. I took 2 Senikot at night before going to bed. I drank at least 2 liters of water a day, and I didn't eat anything that would "bind me up." I think my first movement was after spending 2 nights at home. It felt like an accomplishment. I was definitely constipated, but I didn't strain, and the Senikot took care of everything. I'm just telling you this because it really helped me. I hear that some people struggle, but I take one pill now at night, drink and eat right and have no issues so far.

It's been one week. I have felt a little bit better, a little bit stronger every day. A couple of times I have felt "3 steps forward, 1 step back" and I know that is normal, too. I sat in the garden for a bit yesterday for the first time. And you can see I can sit for enough time to write long messages like this one, no problemo! So overall, I'm feeling good and thankful that I get to stay home from work for so long. Just wish the husband could be a little more....well, that's a story for another day.

I googled the name Paeony, because the peony is my favorite flower. I found out that the peony was named after Paeon, a student of Asclepius, the Greek god of medicine and healing. How amazing is that? 

I hope I didn't go on for too long here...I'm thinking of you, and I'm sending you lots of loving, positive thoughts and healing energy for your journey. You got this, as the youngsters say! ;-)

Take care,

Supercub

P.S. My yoga teacher told me about Australian Bush Flower "Emergency," which is an essence oral spray that you squirt under your tongue twice when you feel anxious. It's herbal, and I have used it from time to time to feel calm. That, and yoga breathing, has really helped me with my stress (breathe in for 7, hold for 4, out for 8, hold for 4, repeat).  Also, if you want to do some mild exercise before your surgery, I did this yoga -- it made me feel more connected to that part of my body, sending lots of healing oxygen to my womb. I also love this very easy 10 minute tai chi session, which I am doing now at home, very gently. 

Hello Supercub, thank you so much for taking the time to write to me, its really good to hear and thank you for all the useful tips, I don’t do yoga but i can see that the breathing will help and will try the exercises and tai chi you mention. Thank you,  You sound like you are doing really well. Well done you. I didn’t know that about the meaning of Paeony, that is amazing indeed. I just want to be at the stage you are at. This week just waiting is really taking its toll on me and my husband! My appointment with my surgeon is monday 10th May.  My stomach feels uncomfortable and I’m constantly worrying that its worse than they think. I see in your profile you mention radiotherapy which is interesting. Ive been told with grade 1 its unlikely I will need it but that they will know more after op. I had a hysteroscopy and biopsy, (i was grateful for the gas and air offered) and at that time the nurse practitioner thought the cells were abnormal but pre cancerous, which would still have resulted in a hysterectomy. It was a shock to get the real result. Thank you again for your kindness and i hope your recovery continues to progress well. Xx

Hi Paeony,

You'll be here soon, believe me...it goes faster than you think. I feel like my surgery happened before I even had time to fully process what was going on. My stomach also felt uncomfortable...but not anymore. And I also had a strange feeling in my womb area that wasn't exactly a pain--more like a pressure or a pulling sensation. That is gone now. I had a small fibroid in the wall of my cervix and I wonder if that is what I felt...who know...even the doctor didn't know.

I know it is hard but try not to worry about things you wonder about. Focus on facts. The fact is, they found your cancer, and they found it early. When you really think about it from a positive perspective, this is good news. That is what got me through the worry. I thought to myself, well it's a good thing they caught it early. It could be worse, right?!? Chances are I won't need radiotherapy, either. The first doctor I spoke with was preparing me for the worst. My surgeon thinks it won't be necessary, because my cancer didn't even show up on the MRI...only in the polyp. Fingers crossed it's all out.

Lucky you, you got gas for your hysteroscopy. I had to grin and bear it, but they put me under to remove the polyp. It was strange to me that I had a 5mm polyp removed in 2016 without any anaesthesia with no pain, and 5 years later I had to go under for a 2mm polyp and missed 2 days of work! Ah well...anyway...happy to know there is no way now that I can ever get ovarian or cervical cancer...two more positives! See, you can make a list of all the good things that will come out of this. Be good to yourself.

Take care and I'm here if you need me!

Supercub

Oh . Your post was so informative and I laughed out loud at the Farting & Belching "Let it out Sister!" Quite right and the medical terminology is perfect!

Going through this horrible cancer journey has given me time to appreciate life with all its ups and downs with more humour than I thought possible.! There are dark days, very dark days and uplifting days but here on this forum there's always support. 

Reading between the lines it's also made me realise I'm not the only one with a Plankenstein for a husband!

Now I'll have to train myself not to yell out "Here's one for the girls" when I pass wind.!

Still chuckling, Barb

Hi Paeony,

I had my hysterectomy 13 days ago and just coming back to normal now.

I'm 62 and had post-menopausal bleeding, ten years after my last period.  I had a hysteroscopy under GA and they found a "huge" polyp which they removed. I thought that was it, but they said I had Grade 1a cancer cells, so on to a hysterectomy.

There is one thing I want to say here, for anyone who hasn't been through the hysteroscopy part - it is your RIGHT to insist on a GA appointment which is a daycare appointment and mine was brilliant - the best part of all of this.  As they wouldn't have been able to take out the polyp without anaesthetic, I would have endured the pain of hysteroscopy and then gone in for another one to remove the polyp.  I read all the reviews of hysteroscopies without anaesthetic and knew it wasn't for me.  Each to their own, but you have a CHOICE. 

So, hysterectomy not as nice as the hysteroscopy! I started out to have a keyhole operation but after 30 minutes they had to change it and additionally do open surgery.  It took two hours.  I came out with metal staples across my stomach where my c-section had been.  Apparently it was the c-section scar which was the culprit and had attached my uterus to my bladder which they had to painstakingly separate.  So, anyone without a c-section, you should not have to have this. 

The first day was brilliant - catheter and morphine on demand - happy days.

Day Two - argh - catheter out and get yourself to the loo.  Obviously mine was worse with open surgery.  The ladies with keyhole managed better.  I had urine retention which meant getting myself up every two hours to wee.  No fun.  Another patient had arrived and was up all night in extreme pain - not sure what her operation had been about.  I used my wax earplugs (buy Quies) so at least I slept in the two hour intervals in between loo trips.  

Day Three - allowed to go home.  Felt very poorly but perhaps mainly due to lack of sleep. My daughter had flown over from Ireland to help.  She was great with injecting my tummy for blood clots - couldn't have done that myself.  Otherwise she wasn't the best "carer" - it's very difficult for our loved ones to see us in pain.  She went home after 10 days to work. With the added nuisance of getting a PCR test there and back, it was all very difficult for us both.

I was discharged on the Friday. On the Monday I had a high fever.  I went to A & E and eventually got antibiotics.  I also was feeling very nauseous so they gave me tablets for that. The urinary urgency was still present and getting no sleep was getting me down. I went back to A & E on the Thursday - it took me 7 hours but eventually saw the gynae surgeon and members of his team.  Had tests and ultrasound scan and was given tablets to help with frequency.  This has been getting slightly better day by day.  Up to about 4-5 hours of sleep now. Hurrah!

Tuesday (today) - went to GP surgery for nurse to remove my staples.  This was very easy and painless.  13 days post-surgery, I couldn't get a taxi and now on my own as daughter returned home.  Decided to drive myself.  It was a piece of cake - no problems whatsoever.  I am going to drive to collect my dog from kennels tomorrow.

I work from home so did a little bit of typing today.  Your body will tell you how much you can do.  Personally I think this 12 weeks recovery time is ridiculous.  OK, maybe I won't be hauling out my bins on bin day until 12 weeks (neighbours helping), but certainly coming up to ten days (even with open surgery) you can wash up, put your washing in and hang it up (indoors), feed yourself (or get takeaways delivered).  Be slow, take your time, be kind to yourself.  I guess you would need some weeks to return to an office job.

Mentally, it takes its toll.  I have depression and anxiety and lost my Dad six months ago. It's been tough. Ring anyone who will listen. Make sure you have optimum medication required from GP.  My histology is not yet back and I do worry about it.  I wonder if I have limited time to live and think much more about provision for my daughter.  However, there is little we can actually do to change things, so we must go with the flow.  Cry our tears and then dry them. 13 days - the longest time I have gone without a glass of wine for a long time!!!

Paeony - I wish you all the luck in the world.  Remember the ear plugs. xxxxx