Additional treatment

Hi I’ve had cancer the second time on my 50th birthday .

 and this time I had cancer all over the pelvis area and had to have a pelvic exentaration wand now left with 2 stomas. Could not have chem or radiotherapy a second time so this procedure has got rid of everything and my lymph nodes have been removed. No other treatment needed may nowivong a different tofecwoth 2 stomas. 

Tracy3210

Just thought I would pop on here to say that I had surgery for 1B2, Dec 23. I got the pathology results via a phone call, direct from my Consultant, two weeks post surgery. Sorry you have been kept waiting so long.

Thankfully the pathology results were clear and I did not need further treatment ( that is often the case I believe) 

I have had follow up checks every 3 months, then every 4 months. Will be every 6 months after Christmas. I have not had any scans during follow up just examinations and questions. 

Hope this is some comfort for you and I wish you all the best 

Serena77 

Hi Tracy

Many ladies don’t need any further treatment after surgery, and hopefully when the pathology results come back they will confirm everything has been successfully removed.

Were you given any indication of when the results would be back? 5 weeks post surgery does seem a long time to wait, so if you haven’t been given a timescale I’d recommend a call to your CNS or your consultant’s secretary to check when you will be advised. Please don’t think that you’re bugging anyone-when I was chasing something very recently with my consultant’s secretary and apologised for being a nuisance, she said not to worry-that’s what they are there for.

It is positive that your surgeon thinks everything is gone, and please be aware that even if you did need some more treatment, this would NOT be the exenteration surgery and stomas mentioned in one of the posts- your situation is not one of a recurrent cancer, which is very different.

Sarah xx

Thank you for your replies! They did say it can be between 4 and 6 weeks as the lab is busy - it just seems to be very long and obviously anxious time. Can I just check was your 3 month checks in person? I received an appointment for a telephone appointment only and not in person. Thank you again!

Hi,

My  post surgery checks were in person as they involved an internal examination

Serena77

Hi Tracy3210 

I had a radical hysterectomy with lymph nodes and ovaries removed for stage 1B2 in February and haven’t required any further treatment after surgery.

My in-person appointment for the results from pathology was 4 weeks after surgery and was made at fairly short notice - once the results were back, I got a phone call to see when I could attend within the next few days as they couldn’t make the appointment until they knew my results were there. At this appointment, there was a discussion about the results, a chat about how my recovery was going, an opportunity to ask any questions and a look at the scar to check how it was healing. 

I have in person checkups every 3 months which include a discussion about how I’m doing and an internal examination. I had a couple of telephone appointments with my CNS in the first 3 months after surgery to check how my recovery was going and address any questions or worries I had. 

As others have recommended, I would suggest contacting your CNS to check if there’s any update on when your pathology results are expected and to ask what the telephone appointment is for. 

Best wishes for your surgery recovery and hope you don’t have too much longer to wait for your results.

Louise x

Tracy, I’d recommend asking for a face to face appointment when you get your phone call if they don’t suggest it for you. 

You really need to have a check up to see that everything is healing well. Even though I didn’t have surgery as my first line of treatment, my check ups were in person to have a chat, have a feel of the lymph nodes in my groin and tummy and have an internal examination. 

After surgery, it’s common to have a post op check up in person to check healing-I’ve had other surgeries and always had this.

Sarah xx

Hi I had adenocarcinoma stage 1b1, grade 1. First LLETZ took everything so 2nd LLETZ clear then had  radical abdominal hysterectomy in January. Got my pathology results after 3 weeks, I was very nervous and because I had unifocal LVSI I was convinced I would need further treatment. However, no other high risk factors so consultant said he wasnt concerned. As we walked to the consulting room he (very kindly as he obvs knew I was nervous) said to me ‘everything came back clear’ so no need for further treatment which was a huge relief. We discussed how my recovery was going but I dont think I had an exam then. My next follow up appt was 4 months later when I had an exam which was all good. Then in August I had an mri, not sure thats standard but it might be because of the LVSI? That came back ‘entirely clear’ which was a massive relief and I’m due for my next follow up next Tuesday so hoping all ok. I try to live my best life inbetween follow ups but the anxiety does return around these appts. I hope you get your results soon and you get the all clear but if not then you will get through treatment and know that you have done everything you can to heal. 

Good luck!!

Hi Tracy3210,

I hope by the time you read this, you’ve already received your lab results and that everything has come back clear.

I’m going through a similar experience. I was also diagnosed with cervical cancer stage 1B2 (adenocarcinoma) in early October. My treatment is scheduled to start on November 17th, with a radical hysterectomy. I’m a 40-year-old single woman with no children.

My tumour was removed via a LLETZ procedure back in September after a positive smear/HPV test (originally thought to be CIN3), but there was a positive margin left. PET and MRI scans came back clear. I tested negative for LVI, which is reassuring, but my doctors cannot completely rule out micrometastasis — this is currently my biggest fear as I’ve begun processing the infertility and early menopause aspects.

I would be so grateful if you could share a bit about your experience before and after surgery, and any tips you wish you had known beforehand.

Just to add, I was offered fertility preservation options (egg freezing), but this would delay my surgery. Right now, I’m so anxious and exhausted that I just want to move forward with the surgery and start the recovery process.

Sending you a big hug and lots of positive energy for everything you may face. I truly hope everything turns out well in your case.

Carmen

Hi, 

I was also adenocarcinoma. My results finally came back yesterday and were all clear with no further treatment needed - biggest relief ever! 

Honestly surgery recovery was much better than I expected- I did end up with urinary sepsis 3 weeks after the op and ended up with another week in hospital but taking that out and I’m feeling incredible and going back to work next week. I had ovaries removed too and was absolutely dreading menopause. I was put straight on Everol 50 HRT patch and have had no menopause symptoms at all. 

Before the surgery I was a sooo nervous about everything - a C diagnosis, anaesthetic, pain, how I’d cope at home with having 4 kids, money from my partner needing to take time off (I was lucky I’m paid in full) just everything was a worry. I ate really well filling up on protein and healthy carbs for strength after the surgery.

The surgery itself (radical hysterectomy, lymph node dissection and ovary/fallopian tube removal) lasted 5 1/2 hours with 3 in recovery before being taken to the ward. 
the next day I was up and walking with the physio, showered myself (sitting) and was feeling sore but good. Everyday I walked more, managed the stairs at day 3. Unfortunately I got a UTI and it extended my stay and I ended up being in for 7 days. 
When I got home I was able to climb the 3 flights of stairs and manage to get in the shower with help of holding on to a shelving unit - I kept them short and sweet. By the day 10 I was comfortable to stand and wash pots and each day was able to be more physical. 

The sepsis at week 3 really knocked me and took 2 weeks of being laid up to recover and this made my physical progress stop and had to rebuild my strength (it was probably worse than the surgery recovery).

Weeks 2 to 6 I have funny zappy pains in my stomach they were probably the worst part of that recovery and some of them took my breath. Reassured that is normal and just part of the nerves healing.

I’m 39 and had open surgery, scar about 2 inches above belly button to below pubic bone - it’s a beauty! As much as I hate everything about what I’ve been through I can say the emotional what ifs and the waiting for results etc was the worst part for me. The surgery was yes major surgery but the recovery was easier than I was expecting.

I hope you’re surgery goes well. I really would say try not to worry but I know you will be as it’s a scary time. Take time for you and ask questions. My Dr is incredible and I trusted him and his team to keep me in the loop and be open and honest with me. 

Hope my babble helps you in some way.