Post surgery

Hi Elaine1903, well done for having had your op. That’s certainly a long time to have to wait for results and I do feel for you. Were you given a predicted grade and stage before your hysterectomy? It’s understandable to worry in advance but it’s important to try and focus on the now, rather than letting your mind go to the what ifs. I know that’s easier said than done but it’s a good thing to try and aim for, and to bring yourself back to. It’s okay to be anxious but we can learn how to not be ruled by it. If you find you need support to Monday to Friday office hours you can phone your CNS; also the Macmillan Support line is open 8am-8pm 7 days a week. I did both several times and it really helped. 

Hi Elaine1903. What a long time to have to wait! I was told at my first appointment with the surgeon, that I was highly likely to have to have follow up treatment,  as my biopsy showed high grade serous. I didn't read all the literature I was given for quite a few days, but when I did, like you, I was terrified, but did exactly what MarmiteFan59 suggested and rang the cancer nurses, who were so good and really put my mind at rest. I was then able to get on with my life prior to my surgery 6 weeks later. Just take advantage of all the support out there. Take care.x

Hi Elaine1903, I waited about six weeks after my hysterectomy to see the Consultant and get the full results, however, I knew from the result of the initial biopsy that it was serous and therefore high grade, the only thing I didn’t know was the staging.  I finished all treatment at the end of last year and got the all clear in February. Like you I worried constantly, particularly because it was serous which has a reputation for being aggressive. My CNS and also the Consultant were very good at putting things in perspective and calming my fears. I am sure your team will do the same for you, that’s what they are there for. Don’t Google, I did and wished I hadn’t! 

Echo the above! Dr google can be a scary thing!

Hi I wasn’t given a stage but it said grade 1 in my letter.

Grade 1 is hopeful. I was grade 3.

Hello Elaine1903

Welcome to the Online Community.

I am sorry that you had a diagnosis of womb cancer. I hope that you are starting to recover from your hysterectomy and are able to rest and take things easily. I found the first week after surgery the most uncomfortable and then started to feel a lot better after that. i had to just be careful not to do too much.

I can totally understand that you are feeling anxious regarding having further treatment and its a long time to wait for your results. I wonder if there is a possibility that they may come through a bit earlier. Mine came back at 3 and a half weeks which still felt like it took for ever. 

You may not need further treatment. Some people do not. But it all depends on what comes back from pathology. Have they given you an idea of stage or grade yet? Sometimes they give you a letter from when you had your biopsy which will give an idea.

I had chemotherapy and external beam radiotherapy after my operation. This was unexpected. I was scared stiff but although it was not easy, it was doable with support from family, friends and the lovely ladies on here. I have a brilliant team of oncology nurses who I feel have been behind me all the way. Some ladies on here have had some brachytherapy, but I did not have that as wasn't recommended for me. 

I know it is hard but try not to google as I did. I read things that scared me stiff and were not accurate for my type, stage or grade. A lot of the information out there is out of date or inaccurate. I would stick to Macmillan or reputable sites like Cancer Research. 

It is important to remember also that you do have choices about treatment. The oncology team normally have a multi disciplinary team meeting to discuss the best way forward after your results come back. You are then called in for an appointment to discuss what happens next and also to check how you are doing post surgery. When I saw my oncologist after surgery it was very much to discuss the benefits and risks of having chemotherapy and to find out what my feelings about it were. It was strongly recommended for me but it was very much my decision. In the end for me the fear of the treatments was less than the fear of having the cancer come back so I put my trust in the doctors and took their advice. 

There are many lovely ladies on here who have been where you are now or actually going through the surgery at the same time and they will understand. Please do feel free to post on here as much as you need to. Sometimes sharing the fear does help. It helped for me.

If you ever feel the need to chat to someone, they are lovely on the support line and the phone number is at the end of this. 

Hang in there, the waiting is hard and your mind tends to go into overdrive thinking about all the what ifs. Nobody can really tell you what you will need until those results come back. But we all understand the fear of the unknown.

If you want to look at other people's stories just click on their name in green and it will take you to their profile. You may want to consider adding to yours at some point. Feel free to click on mine for an idea. I found it helps when posting on here as you don't have to repeat yourself and others know where you are at etc. Up to you though. 

take care and if there is anything else you need, you know where we are. 

Jane

HI Elaine, well done on getting through your surgery.  I had my hysterectomy and lymph nodes removed on Thursday so I am now also 3 days post op.  When I saw my consultant on Friday he advised that my results should be approx 3 weeks.  My CNS also advised that she will call to check on me today / tomorrow, so I was thinking if you have the same procedure in place it would be a good opportunity to express your concern about the length of time you may wait.  You could always give them a call anyway, I am sure they can put your mind at ease.

At my consultation I was advised that lymph nodes would be removed and that I may require some chemotherapy.  However, until that is confirmed I am not going to worry about it.  I will keep hoping that it's all done now.

Focus on recovering from your surgery, as this is something that you are in total control of.  You set the pace, you set your limits.  

Try not to let yourself get stressed about what you don't know for sure and cannot control.  You've got this, and we are all here along with you.

Jules

Hi Gorleston Girl. I notice from your post that you finished your treatment at the end of last year. What did you have? If it was external radiotherapy and or chemo, have you suffered any permanent side effects, or are you pretty much back to normal? I know, that inevitably, there will be side effects, while undergoing the treatment, but am very worried about permanent ones.

Hi Love to walk,

Following a total hysterectomy and removal of many lymph glands,  I had six cycles of chemotherapy (Paclitaxel/Carboplatin), followed by four sessions of brachytherapy which is internal radiotherapy. I did not have any external radiotherapy. I think this was because the cancer had not spread into the pelvic area, nor to any lymph glands in that area but it had just spread slightly into the cervix so the brachytherapy was to mop up any stray cancer cells that may have escaped the hysterectomy.

After 4 sessions of the chemo I suffered from tingling and numbness in my fingers and toes so the strength was reduced to 80%. I think this is pretty common. Now, some 8 months after chemo, I still have slight numbness in fingers and toes and a little fatigue but overall I feel really well. I even had my first haircut last week! 

Please feel free to click on my user name for my full story.