Bad day today - Feeling really frightened

Hi,

reading this forum is really helpful in keeping positive and strong as there are so many wonderful stories and warm words out there but I'm feeling really scared and upset today and need to get it off my chest. I can't stop thinking about if the treatment doesn't work or if the cancer comes back. trying to take my mind of it but nothing seems to be working.

i know I should trust the doctors and they have been really positive saying that they are going for a cure But Im a 1b1 and they found lvsi which makes surgery a no go and recurrence a higher probability than if it wasn't there and I'm scared by it. I'm scared too that if it does come back, they are unlikely to be able to do more radiotherapy so what is left As an option. Reading the risks of other cancers associated with treatment and HRT (which ill need - I'm only in my early 30's) makes it all feel even worse.

i know I'm being a little silly and really should trust the Dr, try to stay positive and not worry to much (you never know what is going to happen in life right) and definitely stay away from the Internet but it's hard and I really needed to say this to someone (rather than keeping it all bottled up).  I'm an emotional monster just now and whilst everyone at home is being really great, they just don't understand as its not happening to them.

thanks for listening x

 

 

Hi fergs83, 

I was a 1b2 later to be discovered a 2b adenocarcinoma. I had a slightly different treatment plan but I had the same fears in fact nearly a year since my treatment finished and I'm still the same, I worry about reoccurrence and it spreading. But it has got just a wee bit easier to live a normal life, it's one of those things will be with you now for a while, but it does get easier to function and live with it. I ended up not having external beam radiation and I used to worry about the options if it was to ever return, but there are options although they don't like to operate after radiation they would do it if it could save your life. I have a follow up appointment today and I'm as scared now as I was at the first one, people say the further away you get it gets easier and maybe I am a bit calmer but come 3pm sitting in that waiting room to see an oncologist my mind will be running all sorts of things through my mind. I've kind of rambled on but it's just to reassure you that your thoughts and emotions are completely normal :) Take care. Charlene xx

Thank you Charlene,

There is such a big part of me wondering if I should have had he operation and then would have had more options if it came back, but they so sure that this option would get

to me to the same place and go have both would be over-treatment. It's just so hard to think straight about things when all of this is going on around you - it's the worst sort of nightmare.

I really hope today goes well for you x

Hi Fergs, I have the same fear and a bit of a different story:

I had conization, because of CIN2, which took out 10x7 mm of squamous cc, with LVSI present. Then I went through PET and MRI, which didn't show anything in particular, and received a go for surgery (trachelechtomy as I'm 34 no children). They took out 38 nodes and 12x7 mm more of cc, but no LVSI and no spread to the nodes. From one side the margins were just 2mm, so they cut more 2 months after, so the margins now from 6mm to 1cm+ and the doctors decided to stop here, no other treatment needed.

 

Having said that all I'm still scared - what if the treatment was enough ... But my professor is pretty sure, though in the beginning he was talking about brachy (because of LVSI)

 

Why your doctors don't want to do surgery? Have you done scans?

I ended up having full chemotherapy loosing my hair the radical hysterectomy and the brachy, my BMI wouldn't allow for external beam. Usually with lvsi they would recommend the chemo radiation as it means it has reached the blood I'm sure xx

Hi liana,

thanks for sharing your experience, that does make me feel a little better. 

They could have done a trachelecmy cause ita only 2cm but are worried about the risk of recurrance - they gave me the option but the way they were talking it seemed

very clear that they were worried and that they wanted me to have chemo/radio.

there was nothing on my pet or mri or than the wee 2cm - no nodes

involved.

its all overwhelming so really hard to know what to do for the best so you trust them.

thanks again  and hope you are doing ok. X

Hi fergs83, I was diagnosed stage 1b1, grade 3 adenocarcinoma, I understand my cancer was a rarer type small cell with lvsi present. I underwent a radical hysterectomy and 25 radiotherapy back in Nov 13. I'm currently doing well and have slowly started to put the fear of recurrence at the back of my mind, that said the fear never goes away, only gets easier. I wish you well in your treatment. Love lea xx

Thanks Lea, your positive words really help and its great you are over 2 years clear.  You are right too - I don't suppose the fear of recurrance will ever leave.  

Do you mind me asking - where you given a choice over whether to have further treatment when they found LVSI?  There is a part of me thinking that it would be silly to have the operation given the increased risk of recurrance, but the side effects of the chemo/radio therapy seem to be pretty severe - to be honest, I'm scared of either treatment and know what my Oncologists view is -  and at the moment everything is moving forward for therapy to start next month and its all moved so fast but I hate the fact that I feel that I was so close to having the trachelectomy for it to be taken away like this.

I think I'm just having a really bad day today and going to pop into one of the local support centres tomorrow which will hopefully help calm me down a bit.

Take care and thanks again x

Yes I was given the option of radiotherapy and chemotherapy. I decided to have radiotherapy to give me a better chance of no recurrence. In my mind I was thinking that if it did come back and I didn't have the extra treatment I would never forgive myself. That said if it does come back I can't have it again as you can't have radiotherapy therapy in the same place. I still can have chemotherapy as they decided at the last hour it would be not worth it as they couldn't say for sure if any cancer cells had broke free. It's your choice at the end of the day, just do what you feel is right for you. I also did suffer with side effects from the RT for about a year after. I still have bowel and bladder issues but for me it's a small price to pay to be cancer free.

Love lea xx

I can promise you all, the terror of recurrence does recede with each follow up. I've stopped being frightened of my scans now, it's just an oppotunity to visit a big city :-)

HUGS

Tivoli

Hello.

I was 2a and had a RH. Post op I was offered Radio because of LVSI. LVSI means that the cancer has tried to enter the lymphatic system, but hasnt 'set up home' in the lymph nodes yet. It adds to the recurrence risk but not by loads, so it' certainly not a huge 'doom factor' I chose not to have Radio. Im glad I didnt because it would appear that I may well need it in the future! 

Its very personal. Radio scared me more than surgery, and carries more side effects i believe, some sail through radio with few side effects, some sail through surgery. 

At the end of the day it is down to your personality, and the percentages involved. I was told that my cancer had a 10% chance of recurring and post op radio would reduce that to 7 or 8 %. Had i been told it was a 50% chance of recurrence and radio would reduce it to 30% my decision would probably have been different. I was also worried taht if i had radio as a 'mop up' i wouldnt be able to use it later if i needed it.

You are doing the right thing by questioning their decision. Not because i think it is wrong, but because at the end of the day it's your body and your life. 

Good luck with your decision. Whatever it is will be right for you.