Newly diagnosed with womb cancer and having to wait for a hysterectomy

Hi there fenwalker and welcome to the site although I am sorry you have had to join us. Yes this covid 19 outbreak is causing havoc with cancer treatment with delays to operations and essential tests and is causing a lot of anxiety for everyone who are already stressed out with their diagnosis anyway. If I could just reassure you, womb cancer is very slow growing. I know you want to get rid of it as soon as possible but to be honest having an operation now would be more dangerous for you than living with it for a few more weeks. Due to the fact that it is more often than not contained within the uterus a hysterectomy is generally all the treatment that most of us need and gets did of it all in one go. Whilst you are waiting for your results and a safe option for your operation, can I encourage you to keep yourself busy as this will help to distract you and keep your mind off the cancer. Lass has compiled  a brilliant list of ideas on the homepage if you are stuck for things to do in these very trying times but my advice would be to start getting your house in order,  batch cooking meals and doing heavy cleaning jobs as you will be very restricted in what you can and cannot do after your operation for some time. Please try not to Google unless it is from reputable sites such as macmillan, cancer research of the eve appeal or NHS choices. Other sites have a lot of scaremongering and out of date information. Please keep in touch with us. We have ladies on here, young and old with many experiences of the different treatments, stages and grades of cancer and we are all very friendly. If one doesn't know the answer then somebody else will. We also have tips and hints on what to take into hospital and lists of things to do before and after surgery. Feel free to ask questions..no question is too personal or silly for us. There is also excellent support and advice from our support team at macmillan, details on the home page, re medical advice, work and benefits. In the meantime Please try not to worry too much, easier said than done I know when you are waiting for results. Take care, God bless love lamb.xx

Hi there,

So sorry that you find yourself here. The diagnosis is always a horrible shock, but this group is a truly wonderful support and a mine of useful information.

I just wanted to echo some of the advice in replies already posted to try to reassure you. I was diagnosed with endometrial cancer in early May last year, but had to wait till the end of July before my op, as I had a serious infection that needed treating beforehand. I was told a couple of months delay would make little or no difference to my cancer, as it is slow growing, so do try not to worry if your op is delayed by a couple of months until it's safe in our hospitals. It was still Stage 1 despite the delay. Having said that, there may not be a delay, as I know that some NHS trusts are outsourcing their cancer treatments to private hospitals in some areas, so it might be worth asking your consultant about this. Also, I know that younger endometrial cancer patients, who want to go on to have children, do not have a hysterectomy and their cancer is controlled by hormone treatment. Depending on your age, this might be a possibility. I'm sure your consultant will be happy to discuss various possibilities with you and find the best possible solution in these difficult times.

Take care and remember everyone here in the group will help as much as we can. Xxx

Thankyou Jagger46 and Little Lamb. I am fortunate in that I am past the menopause and have a two lovely daughters and a young grandson, so have no need  real need for my bits and pieces, but I am rather attached to the them. I was also lucky that I managed to get an MRI within 24hours of the biopsy result, then seen straight afterwards by the consultant, a Merina coil inserted (blimey, that hurt!) and out the door, all due to CoronaVirus and hospital pushing people through. The progesterone coil may help to slow the cancer  down a bit. I will probably get the result of the MRI next week. I'm mainly self employed so not able to work at the moment but was also wondering how long it will take me to get back on my feet after surgery (probably on c section cut due to scarring) and be able to work in my very active job again?  Consultant thought it would be months until I could get surgery, but truly did not know.

Hi fenwalker. It will take at least twelve weeks until you feel able to resume work but everyone varies. This is to allow for healing of the other scars but then do not forget you have to heal inside as well which can take up to a year.It is a major operation but recovery can be quicker if you have robotic surgery only or whether you have a combination of laparoscopic and open surgery which takes longer or open surgery alone. I was originally offered robotic surgery but due to a very bulky necrotic uterus I had that removed by open surgery as well so I ended up with four small scars on the top of my abdomen and a cut along my caesarian scar. Some ladies on here have vertical cuts from just below the belly button but hospitals seem to vary. One thing I would mention if they are planning to go in via the caesarian scar is to ensure they go above it so it gives a tram line effect . The reason for me suggesting this, and I'm sure that the vast majority of surgeons do this anyway, is that the surgeon who operated on me didn't and I had a really bad time of trying to get the scar to close with infections, packing and vacuum pumps involved. I too had a lot of scar tissue and adhesions which they had to remove first but I wasn't told until much further down the line that they shouldn't have used the original scar as an entry point for precisely this reason. Maybe he was trying to minimise scarring, I don't I know, but no chance of me wearing a bikini any time soon...far too large and memories of that best left in my teenage/twenties years! Anyway, that's a very rare occurrence so don't worry but I wasn't able to return to work until December, having had surgery at the beginning of May. After the operation they will get you out of bed the next day and encourage you to walk around. On discharge, they don't keep you in very long now, they will tell you not to bend,lift or stretch so put everything you need at worktop, waist height. In the early days I found it very hard to sit comfortably And was better laying down with about ten pillows supporting me, getting up to walk around occasionally. The next week's I pottered but your body will ache and tell you when it's time to rest. I found I could do approx 15 minutes before I had to stop and rest. This also includes walking outside which I built up gradually, doing laps of the garden first, then to end of road when I felt more confident but don't forget to factor in the fact you have to get back home when you to out. I felt fine one day and went a bit further but then had to keep stopping to rest on the way back..Luckily there were benches. I was done in after that! Also you will find you get very tired very quickly around weeks 4/5 as a result of the surgery and you may have a low mood. All completely normal so don't worry..it's just your body reacting to the surgery. Anyway, here's hoping that you sail through that without any undue problems as most ladies have done here. I hope that helps a bit. Any further questions ask away. Oh, by the way, take a notebook and if allowed somebody with you to the appointments to be your eyes and ears and write any questions down you want to ask the consultant. It's amazing g what you forget when the time comes! Take care. Love lamb.xx

Thanks Little Lamb, that's quite a comprehensive account of what to possibly expect! I'm not a great healer and it took me a year to get over each straight forward c section as I seem to bruise really easily (no medical reason apparently). I will have to rethink my work as I teach fitness classes and have spent years building up a student base. I'm not fabulously fit but do like to teach some challenging activities to students. This is probably why I'm still shocked to be found with the big C. I'm meant to be promoting health and fitness! I will need to adjust my mindset to accept my limitations and, like everyone at the moment, will have to be content with staying close to home and not doing too much. I'm probably scared about the pain and feeling not in control and that is a greater fear than the cancer itself. My last c section was a nightmare as the bruising was so extensive,leading to blood transfusions and horrified midwives and I've probably built it up in my mind over the years. I just thought it was all behind me. I just need to see it all as a means to an end. As for the bikini wearing - go for it! I'm a Granny and have always worn a bikini, there's always someone worse on the beach! I have a birthday tomorrow and my husband has bought me a beautiful colourful  bikini that was going to go to Greece in June. I will focus on wearing it next year instead and try to focus on the life journey instead.

Happy birthday for tomorrow. Have a good day celebrating. I'm a granny too..My granddaughter is 14 months and just learning to walk. My daughter is expecting another baby in early October. How old is your grandchild(ren)? Love lamb.

Hello and welcome , I am sorry you have had to join us here and can totally agree with the wonderful advice already given. Its unfortunatative to be diagnosed with cancer and have the additional stress of the corona virus which has really messed up a lot of treatment for people, and people have had delays in their treatment like yourself and I am truly sorry that you have to deal with. I was diagnosed in 2017 and had a total hysterectomy and was 38 when I had my surgery I was diagnosed just before my 38th birthday so I understand the timing too. I was low stage and only had hysterectomy as treatment there is ladies here who have had hormone treatment and its really helped to treat the cancer. Each of us are different in how our bodies cope with anything that goes wrong. At least here everyone of the ladies are super supportive and very helpful lots of virtual hugs to go round. 

Hopefully you will get your treatment very soon to give you reassurance as I know you will want this offending thing out of you, but womb cancer can be very slow growing and hopefully s delay doesn't cause you any worsened situation. 

Just wanted to send you some birthday wishes for tomorrow.

Hi Fenwalker,

I am sorry you find yourself here, and hope you get your operation soon.

I am a grandma, too. The youngest grand child was a boisterous 3 year old when I had my operation. I used to put cushions round me when she visited to remind her to be careful! She was very good, but on the first time she saw me after the operation she wanted to see my scars. I was a bit dubious being covered in iodine. (I had keyhole surgery, which was marvelous) However, she wasn't upset at all, and wanted to check each week on it. After about 6 months she took one look,  declared it was all much better, and hasn't thought about it since!!!

I was 72 when this all happened, was petrified of an operation at that age, and scared of pain. In the end the operation was not as bad as I expected, and I recovered well. I was kept in for 2 nights because my bladder refused to work. I could not feel a thing down there! It gradually got better. As for pain, it was no worse than a period pain (which I could barely remember!), and I stopped all pain relief as soon as I left hospital. I was determined to get the bowels going, and didn't need pain relief anyway.My husband was once told never to go more than 3 days without a bowel movement, and I followed that advice.

Medicine has moved on a lot since I was in hospital having my children, and I found the whole experience far better than 40 years ago!!

Good luck xxxx  

Thanks GBear. I am hoping to get the results on my MRI tomorrow and rather dreading anything else turning up. I've tried to remain distracted but pretty sure the Progesterone coil is messing with my emotions and I keep having a little sob. I'm usually really level headed and balanced but just having to talk to my daughters on screen only is really difficult as our youngest daughter would normally be back from uni. She opted to stay with her boyfriends family down there and got 'caught' on the wrong side of the M25. She's ok and entertained and has now found a job in Morrisons but I just want to hug her. I can't tell her how scared I am, she's a real drama queen so calls have to be light and fluffy. What's the point in making her worry? My poor husband is trying to prop me up and I wonder if there are suggestions of leaftets/info he can read to help him cope with it all.

Hello i am sure your emotions are are all over the place at the moment it may be that your still processing what you’ve been told, I know it took me months to process everything and my emotions were all over the place the Macmillan booklets that are available were very much a comfort in that I could understand what was happening and what could happen too. Macmillan do a lot of different booklets for cancer type, talking about cancer, financial and emotional. Here is a link to be. Macmillan were you will find lots of information booklets and some are in pdf form so you can read them at home without waiting for them to arrive. Normally I would say about your local information centre would have the booklets but due to the Coronavirus we are all on lockdown. Click on the highlighted link here = https://be.macmillan.org.uk/be/opt-144-booklets.aspx