Unexpected diagnosis

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After being diagnosed with breast cancer in 2021 and going through all the treatment including chemical menopause, I thought I was finished with all this.

But in April 2023 I started symptoms of cramping and a strange pinky discharge. Ultrasound found a tiny fibroid and thickening of womb lining. Hysteroscopy found a little polyp hidden behind the fibroid, but the oncologist was very reassuring and said everything looked normal. She took a biopsy while she was there.

To everyone's surprise, it came back on 27/6 with grade 3 endometrial adenocarcinoma. Everything's moved very quickly since. I had a CT scan 2 days later and if the report is through by the MDT meeting on Wednesday 5/7, I'm scheduled for a laparoscopic radical hysterectomy the following day. Flushed

Has anyone got any advice for me?

Thank you in advance.

  • Hello RedSquirrelsNuts,

    I am sorry to see you have had a diagnosis of endometrial cancer. It must have come as a shock.

    I had endometrial cancer last year. If you want to look at my journey, just click on my name- but mine was dealt with quickly as well. In a way although it is still a shock, I felt it much better to not be waiting around and worrying. 

    I had the same op as you and was well looked after by my hospital. I went in at 8 in the am and went down for the surgery around mid day. I was off back to the ward by 6/7 pm and my pain was well managed. I went home the next morning to recover. As long as you take it easy and don't try and do too much to soon I found there wasn't a lot of pain/discomfort. Within a day I was able to walk up and down my garden and within a week I was able to walk to my local shop 5 minutes away. 

    They will give you a number to call if you feel unwell or experience any problems. I had to give myself anti coagulant injections into my tummy for 30 days and to be honest that was more uncomfortable. No baths for 6 weeks was tough for me, as although you could have showers its not the same as relaxing in a bath when you feel a bit achy.

    Loose comfy clothes are best and nothing too tight around your tummy. May want to have some pads ready. Some people may have a bit of bleeding, I didn't. Nighties are better than pyjamas I found for hospital as you normally have a catheter in place for part of the first day. I made sure I had plenty of easy meals in freezer, snacky things and plenty of drinks. Also got some hand gel so I didn't have to keep getting up and down to wash my hands etc.

    Hoovering will be out for 6 weeks so I did give the house a bit of a tidy up before I went in. 

    In hospital, most of the time I was in the surgery and once out of surgery I just dozed on and off. I took in some magazines but didn't look at them, my i pad and my phone and charger. Not a lot else really as you are in and out so quickly.

    I had 4 cuts in my tummy where they put the instruments through, about 1cm each. They had surgical glue put on them. I didn't have any pain or discomfort from them and they healed to virtually nothing. 

    After the surgery they do a pathology report for you and it took around 3-4 week in my case.

    The pathology normally determines whether the surgery is enough to remove all the cancer or whether any further treatment is needed. I tried not to think too much about that and tried to focus on the surgery recovery first. I was advised to have chemo, radiotherapy after surgery as I was grade 3. 

    I hope this helps a bit. I hope that your results from the scan come through before Wednesday's MDT and that your surgery goes well.

    If there is anything else you would like to know, please do ask. There are lots of lovely ladies on this forum that will want to offer you support.

    In the meantime here is some information that may be of interest.

    Recovering from womb cancer surgery | Macmillan Cancer Support

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  

    We've spoken before about cramping as a symptom. I'm sorry that your suspicions were confirmed. I can only imagine how it must feel to be back at square one after your breast cancer treatment. I hope that date works out for your surgery and best wishes for your post surgery results. I know that there will be lots of members along soon to offer advice, support and blogs. 

    A x

  • HI RedSquirrelsNuts,

    Sorry to see how your diagnosis turned out, I can't imagine having another battle on your hands.  It is great news however that they are moving so quickly to treat this for you.  My diagnosis / treatment was also very quick and I am now 24 days post op.  I found the surgery and first few days to be not as bad as I had expected and am recoverig well.  Fingers crossed it goes ahead on Wednesday and in 3/4 wks you have favourable results.

    You've been here before so you know you are a fighter.  Keep strong and focus on yourself, getting through the surgery and recovering well. 

    The advice in jane2511 reply is what I followed along with other good friendly advice from other ladies on here.

    You've got this and we are all behind you.  Good luck xx

    Jules

  • Jane you are an absolute star, taking the time to type all this out for me. Thank you so much.

    I'm grade 3 as well, but the nurse specialist thought I would need radiation for 2-5 weeks rather than chemo. Obviously that will be confirmed when the histology results are back.

    4 weeks wait. That's brutal.

    Thank you for the link. I'm reading and re-reading everything I can lay my hands on!

  • Thank you Anne for remembering. Yes, you were so kind in my previous post. I was all set to come back and update that everything was OK, and it wasn't. Ho hum.

  • Thank you Jules. "Not as bad as expected" is very encouraging! How are you feeling now? What are you able to manage after 24 days? Are you driving yet?

  • Hi RedSquirrelNuts, 

    I am feeling really good.  Doing most things by myself around the house now, I just take my time.  Can't wait to do my own hoovering instead of waiting for someone to do it for me Slight smile

    I'm not driving as yet, I'm 3.5 wks since surgery and they said 6 wks without driving.  5 days ago I wouldn't have thought to drive, but a few days on I do feel like I could do this without issue.  I will be checking this again with the consultant on Tuesday when I go back for results.

    Wanting to get back to normal as quickly as possible has really helped me mentally and physically.

    Jules

  • Open mouth 6 weeks? I've read 2-4 weeks. Was your surgery a laparoscopic radical hysterectomy?

    Vacuuming I can live without. Laughing

  • My surgery was laparoscopic total hysterectomy.   I think 6 wks is the norm and is also related to insurance cover.  I would recommend checking with your insurer.  I checked with mine and they advised no issue providing doctor clears me for driving., others however will not insure for a set length of time.

    Vacuuming Joy

  • I did not know I was grade 3 until the post surgery pathology came back.

    Mine took nearly 4 weeks to come back because I had surgery just before the long Easter weekend last year.

    My follow up treatments were because I was grade 3 and they were adjuvant treatments- to help prevent recurrence. There are different grade 3 types but they will confirm all that with you post surgery. My advice is to focus on the op and recovery and try and leave thinking too much about the further treatment until you know what they recommend. 

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm