Head says hysterectomy, heart says Tracalectomy

Had a meeting with a surgeon today to discuss my treatment plan.

He sat me down and asked me what did I know.

I told him that I have cancer, that before Xmas, I was told that the scans showed that it was on the surface of my cervix and there was very little cancerous activity and that it was best possible news in this scenario and that I was hoping that he was going to say my treatment was going to involve a Tracalectomy.

He told me that a hysterectomy had been planned but if I wanted a Tracalectomy he could do that. He then went on to discuss the risks of having a Tracalectomy and that my tumour measures at 21mm, more than the 20mm guide that is used for a Tracalectomy. This 21mm is in addition to the 20mm that was removed during the LLETZ procedure. Taking my tumour over twice the max. He also explained that they have no way of knowing how far the tumour goes back until they operate. Which came as a shock as I had been told that that was what the results from the MRI and PET scan would do. (Also had a CT scan)

Right now I’m confused, I feel like I have been given contradicting information and that I’m being told that my only real choice is a hysterectomy or hell, if I choose hell then he would be happy to set me up for that “makes no difference” to him as it’s the same procedure just different amount take out of me.

I don’t really know what response I’m after, just something would be a comfort. Thank you xx

Hi Ren,

Hope you're doing good. 

I'm so shocked he has said he'll do a Trach. The FIGO guidelines are so strict, the original tumour has to be below the 20mm. So he's willing to go outside the standard medical guidelines for you. How do you feel about that? I guess it all comes down to weighing up the possible risks vs fertility. It's so hard and I mightn't be much help, I'd be just as torn as you. My heart was set on a trach, my first consultant refused (I'm 1b 17mm x 8mm, no clear margins, adenocarcinoma) so I have a 2nd opinion on 12th Jan. To tell you the truth if I'd been offered a trach initially I'd have taken it but I can't say for certain that it would be the right decision. After the shock of diagnosis and treatment passes, would we always be looking over our shoulder in fear of recurrence because we had a procedure that might not be sufficient? However, he is a consultant, he knows what he's doing. My advice is seek a 2nd opinion. You have the time as you're only at 1b. I was given a few weeks to get mine before making a decision. It can't do you any harm and will help you a lot. They will be happy to refer you to another hospital who will review your case. You can always go back to original hospital for treatment. X

Hi, thanks for replying. I’m looking for something to convince me that a trach could work, I’m reading the success stories trying to convince myself that I could be one too. But then I have a reality check and think about my 6year old son that I need to be here for and feel so guilty that this is something I’m spending time even thinking about.
I too feel confused about the margins and that he’s even giving me the option. With all the contradicting things I’ve been told along the way, I can’t help but distrust anything I hear from them now. Xx

Hi Lauren,

I think Maeve is right. A second opinion will make it much easier to decide which route to take.

Be lucky :-)
Tivoli

Hi Lauren,

 

I had a trachelectomy myself though my tumour was 22x7mm (total, including the part removed during conisation). As you see, I had 2mm more than recommended to be eligible for trachelectomy, but there was lots of verifications done during the operation itself, lots of lymph nodes taken out, centimetrical margins etc. Even with that I am still asking myself was the treatment enough or I made an error that can cost me life. Sorry about being as direct, I'm just sharing how it feels after ... In addition to that I read sad stories on this forum of different ladies when the treatment was not adequate to the size of the tumors... and they are no longer with us ...

Having said that - your tumour is pretty big, in your shoes I would not risk and I would go for radical hysterectomy. It's not the end of life, for sure! You will have lots of options in the future, but at least you will have this future. 

 

I wish you lots of courage.

Hi!

I too am surprised your consultant said he could do trachelectomy if you wish, given the size of your tumour. It sounds irresponsible of him to put you in this position, you are not a doctor and can not possibly make a well informed decision as you don't have any experience in the field.

I think a second opinion is a must for you, you won't loose anything by getting it..

Hope things work out well for you, it must be very difficult to have to make this decision and I feel for you..

xx

Anna

Hi sorry to wade in.

I have advanced cancer and I've finished all of my treatment and I am having my follow up scans this month. Nothing has been mentioned to me about surgery but I've decided that if it does become an option that I want it all taken away. That's my choice - I am 28 and have no children and don't particularly want them, I know it's a final thing but my way of thinking is do u want to go through all of this again? Do I bloody hell! I also feel that by having this done I can continue with my life if I am lucky enough to survive this and not have to worry about it coming back as I have been told by doctors, read about people and spoken to a lady where the cancer has returned and for the lady it was terminal. I broke down and cried for her as she was so scared of what was to come.

I was so poorly following my chemo and radiotherapy that they stopped my treatment as they thought my cancer had become terminal - luckily a scan showed it hadn't - this made me fight harder!

I don't want to ever hear those words again and I never want to do the battle I have done again - I won't survive it I know I won't. 

It's your decision what you want to do no one can tell you - it maybe that at your operation that the decision is taken from your hands as the cancer has spread a little too much for them to do what you want them to. It may be that on the scans they aren't showing up as much information that the doctors want - the scans highlight your body internally but not all of this information is there as it could be hiding and they can't tell the depth that it has gone to. Ask to see your scans to understand where theyre coning from - my doctor showed me mine. Which is why they have come to the decision that they have. Your treatment is discussed at length with a number of doctors not just one.

Again it is up to you what you wish to do and we will all support you regardless. 

Xx

I had my pre-assessment appointment yesterday and the Dr asked if I had come to a decision. I said that I wanted to go for the hysterectomy, I can’t risk bot seeing my son grow up.
The Dr told me that he was relieved ad there had been a development. A covering Dr (by chance) saw my scans and saw enough to believe that the cancer has spread to my lymph nodes, as there was as a difference of opinion my scans were sent to Leeds who have agreed with the second Dr that the cancer is in the lymph nodes. The only way to know for sure is tests after the hysterectomy, which has been confirmed for 21/01/16. If confirmed, my stage will be changed from Stage 1 to stage 3. X

I have advanced cancer and it went into my lymph nodes - my last scan showed my cancer had shrunk so if the treatment works for me it will you.

i believe that you may need a short burst of chemo and or radio after your op but some of the other ladies will confirm this. It's a shame that you have had to decide to go down such a drastic route but for your sons sake it is the best.

we are all here for you x