Newly diagnosed / post OP

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Hello, everyone. 

I’m currently 2 weeks post OP (midline laparotomy) and currently recovering. I’m diagnosed with high grade EC but staging still not known. I had ovarian mets from my EC so I’m guessing I would at least be Stage 3. 

Feeling quite low right now and scared, even though I know I should be focusing on getting better so I could start chemo/radio as healthy as possible. 

I guess I want to reach out to anyone here who has similar diagnosis and not feel alone. 

  • Hi sulettamercury

    Welcome to the Womb group.

    I am sorry to hear of your diagnosis of endometrial cancer. It is very normal to feel a bit low and scared after such a diagnosis and also after having the surgery. For me I found that the first couple of weeks post surgery were tough as before surgery you naturally are focussing on that. Once the surgery is done and you are home recovering there is time to think and process it all. 

    There are lots of lovely ladies on here who will understand how you are feeling and will want to offer support. We also have the Support Line if you feel like chatting things through would help.

    I was also high grade- if you click on my name my profile will come up- but I am now 2 years post treatment and doing ok. 

    Hopefully your post op results won't take too much longer- for me it was about 3 1/2 weeks. As you are already thinking that there is likely to be some further treatment, that will help as you are prepared for it. For me further treatment started at around 6 weeks post surgery. I had chemo and then radiotherapy. For higher grade it is normal to have some follow up- although there can occasionally be exceptions due to genetic markers. 

    With the staging if it has spread locally to your ovaries- try to focus that although it may well come back as stage 3- it will hopefully have been removed during the surgery. Any further treatment therefore would be a mopping up scenario- to deal with any tiny cells that maybe have been left behind. 

    I hope that you are coping with the recovery post surgery and that you have plenty of support at home. 

    Jane

           

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

  • Hi jane2511

    Thank you for your response and reassurance.

    You put into words how exactly I feel post-surgery. I now have all the time the world to read and research about EC and I can’t help it, I’m just really built this way. “Don’t google things” is easier said than done. My only glimmer of hope is when I read survivor stories and it makes me feel like I could be one of them. 

    My team has mentioned that I will most likely be having chemo and radio after surgery. I reckon this is guideline for anyone with high grade EC. I’m not sure when they will start though as I feel right now I’m still not even 50% of my strength. I had 50+ staples and boy do I feel them still. 

    They have removed my omentum during my surgery but oddly enough, they did not remove any lymph nodes. I’m not sure why as it seems when I read in this forum, most patients with higher grades/stages have lymph nodes removed. 

    Again, thank you for responding. It makes me feel less alone in my journey. 

  • Hi, I am post surgery and waiting on starting chemo and radio next week. They did not take my lymph nodes either which I'm a bit worried about now as I am convinced mine has started again before they start the treatment. My results took 14 weeks to come back which is very rare. Hopefully you get yours back sooner. I get the results of my CT Scan on Monday and like you I have been goggling. It's so hard not to. I'm going out my mind and my stomach has swollen which I'm hoping is stress. Hope you get your answers soon xx

  • Hi, I hope you’re chemo/radio goes well. Are you doing the treatment together in one go? 

    14 weeks is a long time! Did they explain why it took so long? My team said results would be available 2-3 weeks which is probably why they scheduled me to meet them 4 weeks posr OP. 

    Re: Lymph node: I’m also scared about this but at the same time I want to trust their judgement on why they didn’t take some.

    May I ask for your stage/grade? 

  • Hi,

    It is natural to want more info but google doesn't know your own medical details and often can be inaccurate and out of date. With the Macmillan info you can be assured that it is reliable and up to date. I know because I help review some of their content. The womb booklet is below.

    Womb cancer booklet | Macmillan Cancer Support

    High grade does tend to have chemo and external radiotherapy, sometimes internal radiotherapy. It all depends on where the cancer is found after the surgery. There are also some genetic markers that are important as they can affect chances of recurrence. So for me there was no cancer found in my cervix so I didn't need brachytherapy. I was given chemo to mop up any stray cells whole body wise and external radiotherapy to try to prevent any local recurrence. 

    Some people have lymph nodes removed, some don't. It depends on provisional stage and grade and what is seen in the scans. I was high grade and none were removed. It wouldn't have changed the treatment for me. Omentum removal is sometimes done and I would imagine this was because of the cells that managed to get into your ovary. 

    There can also be some variation between hospitals. 

    Further treatment does not normally seem to happen until 6 weeks post op and I was told that this was to be given time to heal and recover from the surgery. My chemo consents appointment was done at around 5 weeks post surgery and chemo started around a week later. My radiotherapy consents appointment and planning appointment took place just before my last chemo appointment. I started the first radiotherapy around a week after the end of my last 21 day chemo cycle. 

    What is likely to happen is that when the post op pathology comes back, they will contact you and invite you in to talk about what they suggest happens next. At that appointment they will check on how you are recovering. 

    Your staples sound really uncomfortable. Don't be afraid to contact your hospital- there should be a number on your discharge papers- if you are struggling in anyway. They can offer pain relief etc. For me I found recovery was about resting a fair amount but also walking/moving around did help my recovery. Listen to your body- it will tell you if you overdo it. 

    Jane

           

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

  • Hi  sulettamercury x 

    My name is Stella   

    I am 12 weeks post my total hysterectomy Op ! 

    I was initially given Stage 1 after initial biopsy and MRI so No lymph nodes were take during my Op .. 

    I nerve wrackingly had to wait 12 weeks for my op ..

    I am now recovering well  !

    I had my results from my  post Op biopsy around three weeks after . Where I was told I was now Stage 3 Grade 2 Type 1 .

    Things moved pretty quickly from then on in  ..

    Had CT scan .. that took four weeks to come back....  Thankfully its showed no spread . 

    A Week later CT planning scan 

    My radiotherapy regime started 8 weeks post Op 

    I am 23 sessions into 25 sessions of Radiotherapy treatment !

    I  finish all my external radiothery yesterday ClapClap going for my last 2 Brakytherapy on Monday and Tuesday !..

    I have four weeks off then I am due to start my Chemotherapy regime.  

    4 cycles of .. 1 day of treatment  then 21 days off !  .

    Radiotherapy was OK for me ! Symptoms have so far been OK loose stools and exhaustion some mild  discomfort .

    Treatment took no longer than 15 mins The staff are amazing !! 

    The worse part for me was the first 10 days of suppositories two hours before treatment ! 

    I have had to watch what food I ate to avoid  bloating . And had to drink lots  water to keep hydrated ! 

    It does feel like a mind field but Try and Keep positive I know its scary and feels like a long road ahead ,  just  take one day at a time ! 

    Do you have a Maggies cancer center near you they are a wonderful support .and offer so much !! 

    Use this forum they have also  been a great  source of support!! 

    Best Wishes to you 

    .

  • I'm having 6 sessions of chemotherapy then 5 lots of 5 Radiotherapy after it. I went this week to start my Chemo amd had an allergic reaction to it. Which was scary, I go back on Tuesday for a rechallenge. Hopefully I will be OK this time. I haven't been told what grade I am just that they thought they caught bit early but it was very nasty. The pathologists couldn't agree on what my cancer was at first and I believe my womb was sent all around the country. I'm just hoping that because it's took that long they haven't given it chance to spread. I felt great after my op now I'm feeling so lost again xx

  • Hi sulletamercury

    I was diagnosed with stage 3 a grade 2 womb cancer, around this time last year.  I found out after my surgery, hysterectomy, that it was stage 3 a because 1 mm of cancer was found in my Fallopian tube!

    After my surgery, which I had in November last year, I had 4 sessions of chemotherapy and in May / June this year I had 25 sessions of external radiotherapy.  I had chemotherapy every 3 weeks, and I felt out of sorts for the first week after I had it, feeling really tired, and a bit nauseous, but started feeling better over the next 2 weeks.

    I definitely didn’t feel as bad with radiotherapy, just sometimes a bit nauseous after the treatment and I felt more tired as I came to the end of the 25 sessions.  I know it sounds like a lot of treatment and sounds like a long time, but you get into a routine and the time goes over quickly.  I can’t believe that all my treatment has finished and it’s almost 1 year ago since my diagnosis.

    I was off work for 9 months, and went back to work at the beginning of September on a phase return, and I must say work have been great about everything.

    I wish you the best of luck and good wishes.  If you have any other questions about anything please ask and let us know how you get on.

    Ange 

  • Hi again, jane2511

    I just want to say how much I appreciate you taking your time to reply to me. Thank you so much.

    It’s making me scared now if they find something on the omentum! But the surgeon did say they couldn’t see any spread other than the ovaries tumor so I’m going to try and hold on to that hope.

    Were you given a number to call post OP in case something happens whilst recovering? I have noticed very light spotting yesterday and today. I panicked a little bit and realised that I don’t have any contacts from the hospital! I googled it and it said that it’s normal but still I’m going to try and call the onc department today. 

  • Hello Cariad1228!

    Really glad that you didn’t have any bad side effects from radiotherapy. I’ve read a lot of horror stories about some side effects and they have me praying I can be one of the “lucky ones”.

    Thank you for sharing your journey so far and wishing you all the best!