hi everyone
is there anyone out there who has had a trac, been given the all clear but said may need radiotherapy to make sure all traces gone?
my surgeon said he has to look more into the type of cancer it is before they confirm further treatment, but lympnodes and margins are clear.
If so please reply very worried
thanks
Emma x
First Smear, age 24 - abnormal 01/08//2013 Lletcz Procedure 11/2013 Diagnosed CC 02/2014 MRI 03/2014 Trachelectomy & Lymph Node removal 09/04/2014 ALL CLEAR!! 22/04/2014 – May need radiothr?
Hi,
I didn't have a Trac but had a radical hysterectomy. Margins clear, not in lymph nodes.
I was asked to consider radiotherapy to 'mop up' anything that may be lingering. I decided against it as I believed the side effects weighed against the reduction of chance of reoccurance was not worth it FOR ME.
My oncologist said that in some hospital I would be very strongly persuaded to do it but she was happy to support my decision. I have been told I have a 10% chance of reoccurence and radio would of reduced that to about 7%.
Hope that helps.
Hi 365
thank you so much for your repsonse, suppose i will just have to see what happens on MOnday,
Emma x
Hi,
I was clear but my margins were very close. Consultant referred me to oncologist as was practise for radiotherapy in this situation. I asked consultant and oncologist what they would do if they were me and they said they wouldn't have it as negatives outweigh the positives in their experience. It would not decrease the chances of reoccurrence really and as far as they were concerned at the moment I am cancer free. No guarantees. Thiscwas my decision. You have to make urs
Good luck xxx
Dons
thanks so much for your response Dons, i will wait to hear what the surgeon advises but also consider other opinions its such a hard call to make though.
thanks
emma xxx
Something that my GP said to me after I had a bit of a 'Oh my god have I made the right decision' meltdown........
'You can always change your mind'
I asked what they would do if the cancer returned, they said they would do radiotherapy. For me it seemed silly to put myself through radio for a very small percentage reduction of risk. When if it does return I wil have radio anyway.
Mind you if I was told I had a 70% chance of it coming back and radio would reduce that to 35% my decision may well of been very different.
You won't be rushed into the decision. I cancelled my first oncology appointment post op because I just wasnt ready mentally to make the decision.
As soon as they know what type of cancer they are dealing with they will be able to give you a much clearer picture to help you make your own decision.
Pm me if you want. x
Hi there. I had rad hyst with clear margins. Was offered chemo\ rad to mop up but( in agreement with my consultant ) decided not to. Theory being there was nothing to zap and you can only have radio therapy in your pelvis once. My cancer reoccured . I am happy with my earlier decision as I have been able to use radiotherapy to treat it now. I had complications in that my kidneys failed so I have been unable to have chemo to date. Tough call. Only you can decide. Good luck x
Hi
I took the advice of my doctors and had the mop up radio/chemo in November, it made no difference, its April and my cancer has come back, now I have less options as I had the radiotherapy before. Of course it is your choice but I wish I hadnt have had it all now as I cannot have the radiotherapy now. As the others said your choice babe and its hard but personally unless you have to I wouldnt x
Love Emma
Hi
I took the advice of my doctors and had the mop up radio/chemo in November, it made no difference, its April and my cancer has come back, now I have less options as I had the radiotherapy before. Of course it is your choice but I wish I hadnt have had it all now as I cannot have the radiotherapy now. As the others said your choice babe and its hard but personally unless you have to I wouldnt x
Love Emma
thanks so much both of you for getting back to me, i really do appreciate it. i saw the docs today and they have said 1 outer margin not clear and LVSI still presents. But if i do have radio it will decreas by 3-4% i am not sure what to do tell you truth. Im 25 so want to preserve fertility but it is a lot to go through for 3-4% reduction in re-occurance if i do have radio, but then i think i should do everything i can really not sure what to do.....i am speaking with radiotherapy person in 2 weeks. feeling very confused still.
Emma so sorry your cancer has come back, stay strong and positive you will get through this!
Love emma x
Hi emma, i had to make the same kind of decision. I decided to go ahead with RT after finîdng out it had some rareties to the tumor also it was aggresive. In the back of my mind im thnkin did i do the right thing or should i have waited but whats done is done now. It is a truely hard deision to make isnt it but only you will decidejj whats best. Wishing you well. Lea xxx
Thanks so much lea and everyone for your reply I think it really helps with to speak with people in same boat.
Lea if you don’t mind me asking – how far are you with treatment – do you lose your hair on your head? Were you also told it will decrease your chances of reoccurance by 3-5%?
Really so confused what to do.
Thanks so much
Emma
Emma I dont mind you asking at all. I havnt had chemo as that decision was made or me in that the didnt want to put unecessary things in my body as there is no evidence of cells getting into my blood via the LVSI. I was told by my oncologist i was high risk of recourance as the cancer had some i think it was small cell also it was grade3.(most agressive)
My RT finished in feb but i have been left with bowel problems and my bladder feels like it has cystytis 24/7. I wish i had thought more aout RT but when i was told the pathology report i got spooked and jumped in head first. Tht being said its done now and if i do get a recourrance i still have chemo to throw at it.
Lea xx
Thanks lea so were u told recurrence was above 90%? I think if I was in your position I would of done the same. did you have a trac or a hyst? I really wish you well and hope your results are all clear, keep positive and strong :) thinking of you. emma xx
Sorry I meant in last message was reoccurance above 10% Sorry thanks x
Lol its ok, i wasnt given a percentage nor did i ask as i was informed every case is different. My decsion wa made when i recieved the final pathology report. It s a very hard choice to have to make when we have all been though enough as it is. Lea xx
Thinking of you today....Hope you got some more information yesterday.
Julia
Thanks so much for your kind words and support. i am seeing a radiologist on 12th to help me make a decision. It is such a hard decision. Thanks again
emma
