Stage 4 cervical cancer, large pelvic mass. Colostomy needed.

Hi Auroraa and welcome to our group.

I’m sorry to read of your situation and where you currently find yourself. 

I had a total pelvic exenteration in March 2020-if you click on my name you can read my whole story from my original diagnosis. I didn’t ask for a second opinion, because I trusted my team and knew from scans where my cancer was situated where it had recurred and what my options were.

I you want to seek a second opinion, you can do this but it would delay treatment if you are scheduled for a colostomy tomorrow. I’m surprised you have not had a meeting with your oncologist/consultant and that such a big decision is being relayed to you by the nurses and a secretary. I meet with consultants all the way through the process to discuss everything. 

My mass had spread over my bladder and womb, but not invaded my colon, which had been damaged by radiation only. However, I chose to have everything removed, including my colon to try to give myself the best chance of survival. I had two colostomies formed-colostomy and urostomy. I had no bowel symptoms, it was functioning fine, but it was still the best option for my case. 

When cancer has spread but is still contained within the pelvis, exenteration is the best surgical option, as it cannot be performed if there is lymphnode involvement or spread to organs outside the pelvis. You really need a discussion with your oncologist, not a nurse, and I would urge you to call them today as your surgery is scheduled for tomorrow.

You have big decisions to make, and very little time, so please try to make contact if you can before your surgery and let us know how you get on.

Sarah xx

I was diagnosed on the 17th January with cancer. I was told Surgery isn’t a option then I had a phone call for me to get a nephrostomy bag to protect my ureter they booked me in the same week.

finally on the 24th I saw my consultant who told me the large tumour was all contained and gave me a treatment scan and date for PET scan. 

im still awaiting treatment as after the PET scan I was told it’s spread to lungs and liver and the treatment plan has completely changed I wish I had known this before as the Nephrostomy bag has caused me so much discomfort and pain I can’t sleep I’m self conscious about it. I put a lot of trust in my consultant and wanted to get things moving so quickly but now I wish I had questioned things more. 

Hi Nightthinking 

It looks like Auroraa hasn't posted again since her original post some months ago, but I’ve tagged her in this post so she may respond if she sees this notification. 

I’m sorry to read you’re struggling with the nephrostomy-I understand from friends who’ve got them that they can be challenging, but I didn’t have to have this as my bladder was removed. I can understand the treatment plan would have had to be changed on the basis of the pet scan results and the spread, but I imagine the nephrostomy would have been unavoidable in any case as it is required to keep your kidneys working.

It’s very difficult to deal with things changing, and the petscan result must have been quite a shock for you after being told that your consultant believed everything was contained. However your team will be giving the best possible treatment to contain the cancer.

How are you getting on? Have you started on treatment yet? 

Sarah xx

I should have started today but on Monday got a call to say a week ago my itinerary showed an infection and no one had followed it up. So I’m on antibiotics and I have no idea when I am going for chemo now. I feel like I’ve been pushed to the side 

Hi, 

So sorry I am just replying to you, iv been having issues logging into my account along with being in my chemotherapy cycle now, I’m a bit all over the place at times! 
So sorry to hear of your recent diagnosis, how are you coping with things now? 
Have you been told your plan now going forward? 

It seems a long time ago since I wrote my post on here panicking. It feel strange reading it bringing back all those memories of that time. I was very scared and unfortunately hadn’t had my detailed consultation and looked at my scans at that point..

I managed to make enough fuss for my oncologist to meet with me in the morning before i checked in for my colostomy. I was very shocked to learn that it was Also in my pelvis bones so I was staged at 4b. large mass from my cervix was very close to rectum, so although I didn’t have any symptoms there I was told that for me to have bevacizumab treatment I would need a colostomy prior to treatment. 
I went to my operation check in immediately after to find out it had been cancelled! I was then called in the next day to stay over night and have it in the morning. I’m living with it, at first it was all a bit too much but by the second day of me getting home from hospital my partner left so iv just had to deal with it and get on with it really. The end goal for me is living longer for my children so that’s all I’m focusing on at the moment. 
Iv started my chemotherapy, I was told surgery not an option. Iv had 4 rounds of chemo and immunotherapy now, my last being last Thursday. Iv only had bevacizumab twice now, iv only recently been told by my doctors that in trails bevacizumab didn’t show results as positive as the other treatments I’m on, however I have only had the colostomy to have bevacizumab treatment. I would rather not have my stoma bag if I’m honest.. I deal with it, and my no 1 aim is to get better and live as long as I can, but hopefully if that happens no 2 can be having my stoma reversed. I don’t know too much about nephrostomys? Can they be reversed if treatment goes well? 
I hope you’ve recovered from your infection and feeling more secure about your treatment plan going forward? 
I’m sorry you was rushed into things before having that thorough conversation first. Mine was happening the same way and it felt very scary. I hope you feel more confident with your doctors now as I do. 
Any questions you want to ask feel free. 
x

Thank you for getting back to me Sarah. 
Sorry I am only just replying. 
Last few months have been a whirlwind of emotions and new situations, the universe is definitely showing me how strong I am at the moment! 

Managed to get my consultation immediately before I was due to be checked in for my colostomy. 
stage 4b, also in my pelvis bones. This was new news to me! Also two large masses in pelvis , one originating from cervix very close to bladder and rectum. Surgery not an option, pelvis extension not an option, was told at this point radiation not an option but maybe could be after chemotherapy and depending on how that works. I started my chemotherapy and immunotherapy on the 2nd January, iv had 4 rounds now with two more to go! I’m pleased to say I’m doing well ( finger crossed not to jinx) with my treatment. Also been looking down the route of nutrition and helping my body in that way. Getting along with my stoma fine, first week was a bit overwhelming but I’m used to it now. I was only advised to have a colostomy so I could have bevacizumab treatment, I know mine can be reversed but I don’t know if that will happen. My focus is just on getting better at the minute! Staying positive and wearing elastic waits!! 
thank you for your support and response, 

Sarah xx ( yep that’s my name too! :) ) 

Hi Auroraa Sarah

It’s good to hear from you again, and I’m sorry to read all that you’ve been dealing with, but glad to read you’ve been doing well with your treatment so far.

Are you getting further scans once you’ve finished the next 2 cycles to see if this treatment will continue? I can’t ever have my colostomy reversed as my rectum has been removed, and my end colostomy is permanent, so I don’t know how things would work to have it reversed. 

I can understand your main focus will be getting through the treatment itself, and coping the best you can-at least you are managing with your colostomy at present. Keeping positive is the best attitude to have going forward, and it sounds like you are doing all you can to help yourself.

I hope that now you’ve found your way back to the group you’ll be able to let us know how you’re getting on, and if radiotherapy becomes an option for you in the future. 

Sarah xx