stage 3C

Hi Loulou26

I am sorry that your expected treatment plan has changed and I understand why you want the surgery first. There are other ladies on here who have had treatment this way round. 

It sounds like what they are suggesting is that the chemotherapy first is because the cancer has already spread into the pelvic lymph nodes. Chemotherapy is a systemic treatment so where there is spread it is perhaps better to deal with it whole body wise first. Surgery can then follow. 

If surgery was done first then the womb, ovaries, fallopian tubes and cervix would be removed but the spread would not be dealt with.

My chemo started 6 weeks post surgery- so if you had the surgery first and took 6 weeks to recover- then during that time the cancer could in theory be moving through the lymphatic system. So it is better to deal with that possibility first. 

It is not unusual where the cancer is locally advanced or has gone further afield for chemo to be done first. It can also make the surgery more effective as any spread has already been dealt with. The chemo will also have an effect at the same time on the cancer within the womb. 

I know it is hard when they change the expected treatment. I am sorry that you are having fatigue and pain as well. Have you spoken to your CNS/Doctor about it? 

Jane

Hi Loulou. I was diagnosed 3B this time last year. In my case they went straight to surgery and then it was about 12 anxious weeks before my radiotherapy and chemotherapy treatment started. I had 25 radiotherapy and 2 brachytherapy with concurrent weekly Cisplatin chemotherapy followed by 4 cycles of Carboplatin/Paclitaxel.

Between the surgery and initial treatment starting I had a pet scan which showed cancer cells in lymph nodes beyond the pelvis, namely the iliac nodes and that changed my stage to 3C.

I do wonder if doing the hysterectomy first and having to wait 12weeks until I recovered from the surgery allowed my cancer to spread further.

In my case a CT scan between the first type of chemo and second type showed that the radiotherapy and Cisplatin had significantly reduced the presence of cancer cells in the lymph nodes. Given that your doctors know there are cancer cells in your pelvic lymph nodes it’s possible they want you to have chemo first to prevent it spreading farther. 

I fully understand how terrifying this is for you especially if you feel well. I think you need to get in contact with your oncologist or cancer nurse and ask them to clarify the reasoning behind their proposed treatment plan.

Good luck going forward and just know that we are all here for you. I’ve found this forum a godsend especially when I was at my most anxious xx

Hi Jane,

Thank you for responding , what you say clarifies things. The last thing I need is for spread through my lymphatic system, just terrifying. I will speak with Doctor about pain and worry tomorrow. I’m dreading chemo as well. I feel like I’m going from a fit healthy person to being flat line’d. I hope I can pull through as I’ve never been challenged like this in my life so far. It’s only because a random ca19-9 test was done by a nurse practitioner that this was all discovered, so grateful yet worried about if it can be resolved x

Thank you I really appreciate hearing your story and hope you are well. Yes I will speak to the oncologist doctor tomorrow to get clarity. Just want to know when treatment can start although dreading chemo I need treatment asap to get everything resolved. I’m so glad to have found this forum and you lot, it’s so daunting and I appreciate being able to reach out and get thoughts, feedback and support from everyone who is or has gone through the same. Sending Good energy to everyone x

I was really worried before I had my chemo but although it wasn't great at times, it was doable. I did scalp cooling and kept most of my hair. I did have some side effects but on the whole they were short lived and could be helped with medication. 

You will have a 24 hour telephone number to the hospital and if you need them, do call. My chemo was carboplatin and paclitaxel and was a 21 day cycle. Most people seem to have this. The first week of the cycle I did feel quite rough and it was a case of resting, and I spent a lot of time on the sofa with a duvet. By the second week I would start to feel better and could do a little more each day. I was able to pop out for short walks etc. By the third week I would feel more normal again. 

Because you are fit and healthy it will help you cope better with the treatments. 

I remember when all the treatments were laid out in front of me and I never thought I would manage them and they would end, but I did and once the first one was out of the way it went quicker than I thought. Focus on one step/appointment at a time and then move on to the next one. 

My chemo ward was divided into bays with reclining chairs. It was a calm, bright and airy place. My experience of chemo was nothing like it is portrayed in the media/movies. I think the word chemotherapy in itself is scary. Chemotherapy just a type of medicine and it can help to remember that. 

Good Luck and if you need anything or have any questions, please do ask. 

Jane

Another great post Jane.  

when I had my first chemo Cisplatin, I was in a chair next to a guy who had had loads of chemo sessions, and the amongst the things he said to me was it’s not like how it is portrayed on TV.

It is the fear of the unknown isn’t it? I was a wimp this week, I had to have eye drops for optician to take closer look at eye, nothing to do with cancer, and I was dreading it, even said to the guy that you’d think after all that had been chucked at me this year, surely I could cope! (And yes I did!).

Thank you for this!, it’s so useful. I have no doubt I will have other questions , very grateful for all your help and info x