New to the site but need reassurance

Dear all,

I have been watching and reading all of you but did not have courage to tell my whole story.

But here I am almost 8 weeks post treatment.

Everything started last year august, got PAP test with HPV16, told pre-cancer cells and nothing to worry.

Colposkopy done, severe changes and pre-cancer cell.Been send for cone. 

Cone done on 14.october, doctoer told me everything looked perfect and nothing to worry.

However 8.dec got the results - CC 1a2, tumor remover with cone but not clear margins. Tumor size 5 mm invasion and 7 mm diameter.

All doctors were so sure that there is nothing to worry. So started with scans:

- CT with colouring liquid shows nothing, lymph nodes all normal size

- MRT shows nothing, lymph nodes all normal size

- PET shows nothing! No spread, just scar after cone

- blood test normal

So I was offered to have trachelectomy, which made me so so happy as I do not have children yet. And I am was not ready to lose my fertility at 35.

But during the operation they inspected lymph node in frozen sections and one signal lymph node appeared to have microscopic metastasis of CC.

All the inner looked good and my doctor says that normally cervics look like bulk when it come to CC. But mine was looking like I was 16 years old girl.... tears....tears....

So I had to have hormon cure to harvest the eggs, 6 very good eggs frozen. Hoping to find surrogate mother.

After all this I had to have chemorad. Started 1 march 2017 and finished 13 aprill. Lucky to say no side effects beside diahhorea started in week 3 and a bit tiredness. Till now did not use the dilators as doctors seem to be happy with my vagina not shortened or what so ever. 

I had IMRT brachy as well, and there was always written - clinically tumor is not seen.

I was working all through the treatment and even between brachy days. Now I feel great, no pain just those thoughts in my mind which make me crazy....

I am looking here for those who are 5-6 years survivors and found some people like Naz and this made me so so happy.

Just had my doctors check-ups this week, all are happy with the results and reassure my that I am the lucky one to be caught this early...but it took my everything - my fertility....

The most thing I am afraid of is that cancer will come back. Been reading tons of articles and found that my 5 year survival rate is 35-65 % as I had cells in my lymph node. 

And secondly afraid of lymphodema. Recently went back to gym, started golf on weekends.

But still wonder what I am allowed and not allowed to do. I love sun, but now I understand that I am not allowed to do it.

 

Please please long-term survivors tell at least some words that you are ok! 

 

Kind regards,

Tanya

 

Hi Tanya

I'm so so sorry to hear this. I can't imagine what it must be like to have fertilty taken away,so unfair.

I'm not in the 5-6 year group so can't help you out there sorry, but I did recently have a long appointment with a lymphodema nurse to talk about how to mitigate risks and have some (very sexy) tights to wear for 6 months. do you have some? 

I have lots of details/list of do & don'ts I can share with you if useful? 

Sounds like you are active which is great, as this will help your lymphatic system get into action.

Hi Tanya,

 

i am still here!

 

Big hugs,

 

Nxxx

Hi. I think that a lot of people stop coming on the site once they are post treatment as they just want to get on with their lives without thinking about cc.

You've done great to be 8 weeks post treatment with no pains and even more amazing for working through your treatments! 

Don't pay attention to statistics - you are not a statistic plus they are at least 5 years out of date. The ladies in the statistics would have had their treatment at least 5 years ago and in this time treatment has become more effective. 

Don't live your life in fear - you are letting the cancer win. It may have took your fertility but you still have your future. There's a good chance you won't get lymphodema. You can still go in the sun, just be careful  (which is good advice to anyone).

I'm about 15 months post treatment and my life is the same as before ordering had cc. Most people don't even know.

Look forward to the future x

Dear girls - Rachel, Naz and Philleepa!

Thank you so so much for your support!!!

To start with I have a great news, during my last visit to oncologist they took some biopsy or citology (some material from the cervix) and yesterday i got the results - NO CANCER CELL  ON CERVIX. There is a post treatment change and some other cell which i do not understand. But the most important was to here no evidency of cc.  Later this month I will have my first post treatment MRI as I am worring like a crazy with lost of tears even when doctors say everything is great :) Drama queen as I am ;)

I am thinking of my upcoming holiday and still thinking whether I am allowed to go to Greece for example. I am not planning to sunbath at all, but probably hot climate is no good after treatment. Someone please comment on this :)

Recently I have started long and fast walking-jogging-half running, but still a bit scared to move too quickly.

I have sexy tights which I wear under sportswear to the gym and for jogging. Now legs seem ok, but I measure them everyday (crazy hah),

Sometimes looking in the mirror it seems that one leg is fatter but I am not sure it is lymphodema. How many of you have it? 

I am not happy to be wearing tights all my life.... :( 

May be I am worring too much as Philleepa said it is better to live happily and not in fear.... You made me think of it....

 

I am so happy to have found all of you!

Tanya

Hi 

you said it all at the end live happy and not in fear 

honestly you are doing amazing with your recovery keep it up 

as for the holiday I went on holiday 6 weeks after finishing chemo rads It was a god send I was really ready for a holiday I'm not a sit on a beach all day lady I'm active so was out and about walking cycling and shopping of course 

I got sunburnt well brown not red just mullying  around I did keep my belly covered at all times it was a fabulous holiday and well deserved as yours will be 

 onwards and upwards 

love michelle xx 

Dear Michelle,

Sorry I did not see you message right away!

Thanks for your reply, this is so sweet of you to take time and answer to a such crazy as I am :)

I am still a bit afraid of being outside, however I understand that this is not very dangerous I am still not plannign to be outside.

Did you ever wax bikini after treatment? This is the second fear I have and lymphodema as well. I was told that this is more to be in cased where lots of lymphnodes were taken. I feel ok but measure my legs every days and it started to seem that one is a bit fatter that another.

I have a bit puffy groin but not terribly, just a bit and mostly after doing sports. Do you have it also?

 Doc says it is still that lymphatic system is not used to be different and gathers more on the site where lymphnodes were taken.

And secondly is recurrence. But I am happy that I see less of it lately on Jo`s

Best regards,

Tanya

Hi 

I've never had my bikini waxed I'm a wimp when it comes to pain I just use veet lol 

I also don't have any advice on lymphodema as i haven't had any of my lymph nodes taken away there are ladies on here that suffer from it though 

however I can give you advice on recurrence as I fall into that category Ive never been given the NED since being diagnosed in may 2015 I dont let it stop me doing anything I know I'm palliative  I lead a normal life I go about my daily routine as I did before my diagnosis Ive always been a get up and go girl so that's what I do I refuse to sit in stressing over what lies down the path I take every day as it comes and enjoy every day 

what I'm trying to say is why waste your days worrying about recurrence when you should be out there living your life and being happy if you live in fear of recurrence everyday and don't move on then if your one of the unlucky ones and it does come back then you've waisted your good days 

I say I'm terminal but so is everyone we are all born terminal no one can predict the future but everyone should live there days to the full

stay strong and be positive 

love Michelle xx