Hi all, I found this site when I was first diagnosed with st2b cervical cancer and reading your experiences has really helped me understand what is happening. I’ve not posted on here before but would really like to know of others who are in a similar situation to me. I’m 36 and as above have st2cc with one lymph node involved. The consultant is happy it is still within the pelvis and I’ve recently completed chemorad and brachytherapy. Both very doable if frustrating and exhausting at times! My four week scan showed very little response. The tumor shrunk by 1cm (4 down to 3) and the lymph node by about 5mm (15mm to 10mm I think). I understand from some of you, from one of the nurses and from other websites this can be normal but my consultant is concerned and has proposed a further round of chemo to start in the new year. The hard stuff this time. I have also been told by the doctor on the chemo ward that I have a very aggressive, high risk cancer. (It is squamous cell) but then spouted out the standard statistics of 65-70% survival?? All the while looking at me like I was on my deathbed!?! On top of this they are suggesting that if there is no further significant reduction at three months they will go straight to pelvic extenteration. This seems too much and I thought this was only used for recurrence. Has anyone else had this after three months? Surely that’s too soon to know if the initial treatment has worked?? I really don’t want such surgery unless it is absolutely necessary. I am waiting for another mri result which may help but I’m going mad over Christmas and just hope I can hear something positive
sorry for extended post but thank you for reading x
I’m sorry to hear that your treatment hasn’t been completely successful.
Are you definitely having the chemo? I imagine you are having six cycles and although it’s strong stuff it’s good stuff! I know they have mentioned exenteration to you but it sounds like you are having the chemo first?
I’ve had both the chemo and the exenteration and there are other ladies who can help if and when it gets to that stage. For now it’s all speculation - you don’t know how the cancer will react to chemo plus there is still chance for the radiotherapy to work some more.
My advice would be not to let it spoil your Christmas. It’s hard I know but you are in limbo and you are worrying about things that may not even happen. In my experience worrying just ruins the now. Easier said than done I know but don’t let cancer take more than it has to.
I think you should make contact with weeping willow who is in a similar position to you just now.
Although I totally agree with Cara in that the treatment could still be working, I think it's important to emphasise that if your medical team are worried and offer you exenteration do not delay in thinking it's too soon. If the disease is allowed to escape out of the pelvis you will no longer be eligible for curative exenteration. I am actually impressed that you are being considered for this because in my opinion some women are not being offered it early enough. It isn't just for recurrence it's also for tumours which progress and also second primary tumours.
Definitely put it in a box for Christmas though! Cars is right..She often is!
Im sorry to hear you are also in this position and Petesdragon who has given me such amazing support and kindly suggested we chat has actually summed up perfectly what my consultant told me.
I was diagnosed with stage 2b in July and like yourself completed the chemo/radiotherapy/Brachytherapy treatment. At the point of my Brachytherapy scan I have apparant residual tumour which at the point of my 3 month MRI is still present without change. This sent me reeling and into complete panic and I initially was expecteing a watch and wait rescan but like you appear to have, I have a brilliant consultant who wants to move on quickly and get this thing dealt with so like petesdragon says we are still looking at curative intent. I’m also playing the waiting game at the moment with a potential straight to surgery approach after further scanning and bioposy to confirm the expected tumour is what it is thought it is. The surgery is a scary thought and I guess life changing but is still a chance of cure and During this awful wait, made longer and more difficult over this period I keep focusing on that. It almost feels like diagnosis again doesn’t it. Going through so much for it not to have completely work. You may not need the surgery. I may not and I’m sure you going over the what ifs too but if it is needed The ladies here will support us and I’m sure we can help each other. I will also send you a message in the morning x
Lovely message Weepingwillow. So kind of you when you are reeling with your own shock.I think you will do brilliantly you know, you have the right attitude to deal with what's to come.
Thank you so much all. Thank you for helping me look for the positives. I hadn’t thought about waiting for surgery potentially removing the opportunity for cure. You’re right in that the chemo might work and I need to hope that it does. I guess my panic is that as the treatment so far might not be I now have the wrong attitude and assume the chemo won’t. It’s just so much to take in isn’t it? I am really happy wth my consultant and that he has offered chemo at this stage rather than the wait and see approach. And thank you weeping willow, I will look at the message and get back to you
I really hope all of you get the positive results you need to hear :). X
I know it’s not a good situation for both you and Weepingwillow but to be able to discuss and support each other at this time is beneficial to you both.
I would 100% advise anyone to get the exenteration if they were offered it. Not an easy operation at all but it’s worth it for a shot at a cure. It probably sounds strange but I wanted the operation more than anything and felt lucky to be offered it. There are so many hoops to jump through to get that operation so I snatched it with both hands.
I just got the impression Zoltan your consultant was suggesting the chemo mix first.
Right now though...you can’t do much about the situation. I know how you feel, i’m not in the best predicament myself at the moment but my Christmas won’t be ruined and yours won’t be either! It will still be there in January and you will get a plan of action.
Please try to have a good one.
Such kind and reassuring words from you both Karen and Cara.
Im sure Zoltan and I will be able to help each other through this.
Im terribly scared but am too desperate to be considered for the operation. I will do anything it takes and hopefully in the new year we can move forward and quickly with a plan.
lots of love and best wishes to you all x
It’s difficult but try to focus on those words - in the new year you will have a plan.
Try to enjoy Christmas the best you can.
Love Cara xxx
Yes, stay focused on the best possible Christmas. The operation is challenging, Cara and I won't lie about that, but it will buy you the next Christmas and hopefully many more after that. You will get through it and we will help.
Thank you Karen and Cara for your reassurance at such difficult times for you both. I hope things get better for you both. Thank you Karen for putting me in touch with weepingwillow. I had been scouring the pages for someone in my position but hadnt found anything. It is really helpful to be able to speak with you, although heartbreaking to know you are going through it and worse.
I am being offered chemo first, 4 cycles, and I am so grateful it was offered as I do want to hit it with everything they've got, despite my hatred of chemo (I preferred the brachy to cisplatin, what is wrong with me?? :D). I appreciate I could be getting ahead of myself with thoughts of surgery, but I'm one of those that needs to know all the outcomes.
How is life after surgery? I saw my mom struggle for years with a bag due to ultrative colitus so I have only seen the negative, although I understand there are many who cope quite well. My mom has an internal pouch now but still struggles so much. I think that is what is bothering me about it. After wasting my 20's on the wrong man and the wrong job, I have spent the first half of my 30's trying to get things right and now with this I cant help but think my 30's are going down the drain too, another hiccup with my career and another obsticle in my love life.
Anyway, enough about me, I am finding Christmas a wonderful distraction and I really hope you are too. I hope you have a fantastic Christmas and here's to a healthy and happy 2019 to all of us xx
I am in the same position.....diagnosed with 2b cc with 1 node involved. My treatment plan didnt work....only managed 2 chemo sessions as i had such a bad reaction. I completed my 25 sessions of radiotherapy just to be told the tumour had not responded at all (no shrinkage) and node still present. They also cancelled my brachy sessions. They are now proposing surgery (hysterectomy) but i am terrified this may not work. Being told the tumour had not responded to initial treatment was like being given the cancer diagnosis all over again.
Has anyone else had initial treatment fail to then go on and have a hysterectomy?.
Really sorry to hear that you’ve not had success yet either and that you weren’t able to go through with chemo or brachytherapy.
i assumed my next step would be hysterectomy so was surprised when they talked about exenteration. Have they discussed their expectations of success with you?
I’m afraid I can’t answer your question although I’m sure others can but wanted to let you know I understand your fears and frustrations. I think we all do :). X
I am sorry to hear you too are in the same position. It is indeed like the shock of initial diagnosis and like Zoltan said we total understand how you are feeling.
The fact they are discussing hysterectomy already shows that other options are available, it isn’t what we had hoped for but the team will come up with the best plan. I find comfort in reading the words from the ladies living beyond what we are currently experiencing and we have to believe treatment will work and we can help each other through this. My GP said to me to have faith in the oncologists as they are on our side and we may need more treatment options than others but that doesn’t mean we can’t achieve the same end result. I know it’s so hard but if they mention the more treatment they must believe it can work xx
I have heard of others offered hysterectomy after unsuccessful radiation treatment. However, I know of one young lady who had the same sequence of events as you. She eventually needed to go on to total pelvic exenteration anyway. By the time she got to that point they were unable to get clear margins which has reduced her chances of being cured.
I am not trying to frighten you but it's important to make sure you have that conversation with your medical team. Ask them how confident they are about getting clear margins with a hysterectomy. It can be difficult for them to sometimes achieve once you have had radiation as tissues fuse together and it can be hard to determine what is tumour and what is scar tissue. In some circumstances, horrible as it is, you may be better to go for the total pelvic exenteration as has been proposed for Weeping Willow. If you are being treated in a small local hospital I would be tempted to seek a second opinion at a tertiary hospital with a specialist gynae oncologist who carries out this kind of surgery. They would be best able to advise.
I am so sorry that this is happening to so many of you at Christmas. I wish the very best for all of you.
Thank you all for your responses....it is awful that so many of us are going through this.
I am due to discuss the surgery after new year so still not sure of the exact plan....my Oncologist just said they were going for a hysterectomy option, although on the letter i have just received today it says a 'salvage hysterectomy' so not quite sure what this means and i am not fully clear what pelvic exenteration actually is?. This has not been discussed at this point but i will bring this up with my oncologist.
Thanks for all your advice, it helps to know there are others out there xx
For some reason I’m awake early unable to sleep...I don’t think it’s because i’m excited but who knows ha!
Your Mum probably had an ileostomy bag and they are harder to deal with generally. I cope with both my urostomy and colostomy pretty well. I had the operation two and a half years ago and to be honest I was used to the bags a long long time ago. A doctor told me what a big operation I went through and I almost rolled my eyes at her - it is a huge op and at the time it was difficult but I don’t feel the need to discuss it with Doctors or friends and family now because it’s in the past. I’ve bigger fish to fry! I am however always happy to help those struggling before, during and after the operation.
Now you have a lovely Christmas and this will all get sorted in the new year. Have a good one.