Hi,
I'm new to this forum but figured it would be the best place to start.
I was diagnosed with a stage 1B2 adenocarcinoma in October last year, and was told that my tumour was too large to perform a radical hysterectomy, and so had to go the chemo-radiation route. This reduced the tumour to 1.3cm x 1cm and I was referred to the surgical unit, had an examination under anaesthetic - and my operation was booked for June 12th this year. A week before this, the operation was pulled as during the MDT, they noticed I also had an enlarged pelvic lymph node (left iliac node) and the surgeon told me I would have to go through more chemo to reduce the size of it - it was 1.1cm at this point - and then he would operate. After three cycles of Carboplatin (the first cycle was Taxol also, but on the second cycle I had an allergic reaction to the Taxol) my cc is 1x0.5cm and the node has shrunk to 0.6cm - but the surgeon still will not operate on me, and I've been advised to get a second opinion from either Janas Balega in Birmingham, or from the gynae surgeon at the Marsden where they are more proactive in surgery than the one I have at The Christie in Manchester.
I only get one shot at the second opinion, so was hoping someone on here has experience of Janas Balega at Birmingham or the team at the Marsden - or if anyone has had an Iliac node removed, who performed the operation?
I know that I'm still having treatment (three more cycles of Carboplatin) but I'm terrified that if I don't have the radical hysterectomy they've been telling me from day one that I need, that I'll just be on palliative care when these cycles end - I haven't a clue what else they can throw at me after this.
Thanks in advance -
Lindsey x
Hi Lindsay
I noticed no one has commented on your post, so just wanted to say hi and share my experience as I was also 1b2 on diagnosis.
I was given the choice between surgery and chemoradiation. My tumour was 4,5cms - so borderline for treatment. I chose surgery, with guidance from my gynae/onc, on the understanding that if there was any evidence of spread then I would have chemoradiation as well. This wouldn't have been great as it counts as 'double treatment' and reduces your options in future should you suffer a recurrance. Fortunately for me surgery was adequate and I got the all clear two weeks after.
What I'm not clear about in your post is why you think surgery would still be necessary following chmoradiation? If the cancer has spread outside the cervix, surgery is not an option, and it was always stressed to me that surgery or chemoradiation are equally effective. It would seem to me, and please forgive me if I'm wrong, that surgery at this point would be like closing the stable door after the horse has bolted.
As regards second opinions, all cancer care is subject to an MDT - a multi-disciplinary team meeting with a variety of professionals, so it would seem unlikely that your consultants opinion is his alone - especially in a hospital like Christie's.
I hope I haven't offended or upset you - and if having a second opinion puts your mind at rest then it's worth seeking for that reassurance alone.
I sincerely hope you get the answers you are looking for and wish you the very best outcome from your treatment.
Take care, lots of love
Louise xx
Hi Louise
First - thanks for your reply ( I'm glad to see you've had a happy outcome) :-)
Surgery post chemo-radiation was always part of my treatment plan, hence why I believe I need it. The chemo-radiation didn't clear the tumour, and I am now having a second round of chemo to try to clear it - but before I started this round I was again told I would have a radical hysterectomy and lymph nodes removed as the cancer hasn't spread out of my pelvic area. The surgeon has now decided against performing the operation but I have been advised by my consultant and two other people also in the same MDT to get a second opinion as another patient refused surgery by my surgeon has had the same operation done elsewhere and is now cancer free. In the event of this round of chemo not clearing the cells, I'd like the same :)
Lindsey xx
Hi Lindsey
thanks for filling me in! I think it's awful that you are being given mixed messages from the MDT and if I were in your shoes I think I would have major alarm bells ringing!
I've never read or heard of anyone being put in such an awful position and would definately be seeking a second opinion in your situation.
Take care and let us know how it goes.
Lots of love
Louise
I know, it's driving me mad. reading up on it, it should\could have been looked at before I had any radiation and without the hysterectomy - they could have removed it and then the radiotherapy would have knocked out any micro cells drifting, but too small to enlarge a lymph node yet. I need to stop reading things because I keep getting angry.
I have the appointment with my GP set up to get the ball rolling, and I have spoken to the Consultant's secretary to make sure he is going to be around to do the surgery if he will take it on (he's on holiday now until Sept 2nd which is good enough for me because I don't finish chemo until 25th September).
Even if he can't do the hysterectomy and remove the lymph node on it's own, he might do an exenteration which I could handle more then the alternative :)
trying not to get my hopes up because it's still a while off, but I've got to keep positive too.
Lindsey xx
Hi again
do you have a CNS to support you through any of this, or a Macmillan nurse? It just seems awful that you are left to navigate this by yourself. Did you have all the usual tests when first diagnosed like MRI. EUA etc? Just wondered why the iliac node wasn't found at the start.
Good luck with your next consultation, sorry my advice is limted as I didn't have chemoradiation, but there are lots of ladies on the forum who have and you may find some comfort in some of their responses as to the outcome of their treatment/experience if you post a question related to that. Just a thought.
Lots of love
Louise
I do have a CNS - and she's amazing - but she advised I get some advice from the girls on here if possible.
The reason the node wasn't picked up initially is that it was 0.8cm in October and they don't flag them up until they hit the good old 1cm mark - otherwise I would have had it removed before the radiotherapy I think.
xx
Hey there, My mom was diagnosed with stage 3 cervical cancer, but then they thought it was only vaginal cancer. She had a 4 oz tumor and had chemo and radiation for 6.5 weeks. They said that her outcomes were great. She was supposed to go in for a biopsy for the last little bit and when we went to get it read they said she needed a pelvic exenteration because the treatment failed. THere is only a small piece of tumor left that they call a callous. I am wondering if we should actually go through with the surgery? She is very worried about living with a colostomy bag and does not want to go through with it. I am terrified that if she does not do it she will die. Any advice would be appreciated
