Hi everyone, I've been diagnosed with 1b2. I had no symptoms, the tumours are tiny, but they are spread throughout the extensive cone biopsy sample they took. Due to the unpredictable nature of where the tumours are at, the safest option for them to get everything is to do radiotherapy.
I'm terrified. Even without thinking about the effects of not being able to have children (I don't have any yet), I'm terrified that my youth and health will be permanently taken from me due to the long-term affects of radiotherapy.
I'm terrified that sex will forever be unenjoyable, that it'll literally shit myself in public, and that, if I'm lucky enough to not get lymphaedema, I'll be too scared to go on long flights because of the risk (I live in Australia, so everywhere is a long flight). I'm scared about menopause. I'm scared that I'm 34 going on 50. Until this happened, I'd never even had the flu.
Everywhere I look, it's stories of women not being okay with the long-term effects, and I'm desperate to hear from people who say it's not so bad. Maybe they don't exist, and I'll never be okay, but if someone could tell me it's going to be, I'd really appreciate some light in the darkness.
Well I was diagnosed when I was 34 way back in 1997. Ivan still here and that's the main thing to focus on.
I have suffered from the things you mention and worse as I needed further treatment from amother cancer.
But do you know what? None of it matters. You adjust to the new you and different way of living very quickly. You will be just fine.
My one tip is to be vigilant with the dilators as instructed that way you will have no.problems with your sex life. I know plenty that couldn't be bothered and regret it terribly.
I fly all over the place with lymphedema, I just wear compression garments. Not everyone gets it anyway. You might get lucky.
Thanks for reaching out.
Similar to you, I was given the same diagnosis as you at age of 32 and had chemo-radiotherapy. I am now 44 and still here!! I don't have any major long term side effects apart from early menopause for which I take HRT.
Like you, at the time of diagnosis, I was in shock, terrified, filled with stress and anxiety as to what would happen to me. I'll be honest, the treatment is no walk in the park but its doable and you will come out the other side. My advise is ask lots of questions about anything you are unsure about, anything that is causing you worry/concern, no matter how small or insignificant and don't feel bad to have things repeated to you. If you can, find a local CNS and use them as support - my experience with them have been brilliant. Ask for what you need to help you get though this. For example, I specifically asked to see the radiotherapy room in advance and wanted them to explain to me step by step what would happen, how the machine works, how long will I lie there, what sounds will I hear, will it hurt etc. For me I needed to know this to prepare myself psychologically but everyone is different and for you it may be other things.
The infertility side of things is really tough, will not lie. I also had no children when I was diagnosed. I had counselling in the first 2 years whic helped and also once a few years back. It never leaves you but the frustation eases with time. Again, everyone copes in their own way but I would definitely seek support when you feel like you are ready.
I hope this gives you some sense of hope. I'll be thinking if you.
I'm 38 (clever screen name right? ha) and was diagnosed 2B in July. I finished the initial treatment in Oct, and am still not able to fully accept the reality of it all, carrying on but the shock is still there....I guess the denial is helping me cope, for now. I have my first follow up scans tomorrow and am really scared (again). I think the hardest part so far is thinking about what the "what ifs" of my future. I'd also never had any medical problems. I was only starting to really want children and then suddenly can't. I'm on HRT. It all just happened so fast. I've felt like I really had to dig around the interenet and search for women my age that went through this, and they are out there...I've heard it said that lots of them just stop chatting on these forums once they are well and have moved on, so that is nice to hear. Anyhow, I just wanted to tell you I'm in the same boat and it's really hard not to think all the worst will happen when you're still trying to believe it has happened in the first place! Finding the women with a similar treatment who are a few years out is SO helpful so for both of our sake's, everyone please keep the follow up stories coming!
Hi there. I was 26 when I was diagnosed had chemotherapy, radical hysterectomy and the brachytherapy. My sex life is completely normal, no issues after lymph nodes removed other than a weird numbness directly after the surgery. I do have some issues with my bowel which can be restricting but on the big scale of things it’s not an issue really. You adjust and kind of get to know yourself again and become aware and know when things are going to flare up :). Xx
Hi Becc, you’ll come out the other side from this. One of my docs said to me things may be different but you’ll still be here!
My advice would be to get referral to speak to someone, couple sessions may be all you need but chatting it through all of it with someone outside of the family:friend circle was invaluable to me.
can’t get away from it being a terrible thing to happen in your life but I’m 18 months on and it does stop being so all encompassing
good luck oh and get booked into a menopause clinic if you have one available, sorting that medication pretty helpful too!
Thanks all for your replies. It's amazing how reading replies like this can lift your spirits after reading about all the complications!
I live in Australia as well - where abouts are you?
I'm sorry to hear you are going through this rollercoaster of emotions, especially around this time. I was diagnosed in July, started chemo and radiation in September, had three weeks off then back for brachy. I had all treatment done at Peter Mac Hospital in Melbourne and my whole team was amazing.
I am a fit and healthy 37 yo and had hardly ever been to the doctor prior to this whole thing. Throughout treatment I had no side effects other than one day of constipation and a mild heartburn. I was given medication for both which took the discomfort away straight away. Other than that I was still able to work and exercise regularly during treatment, which I am sure really helped me recover. Brachy was smooth and there was no surprises either. I have had my first follow up and am now waiting for PET scan in May. I don't seem to have any long term side effects - my bladder and bowels are working fine and I can't really complain. So as you can see, my experience was a walk in the park compared to what some ladies here have been through. My doctor said they can never tell how well a patient is going to cope with treatment until they are going through it. Eeveryone responds differently. I was back in the gym the week after I had finished brachy (nov 12 was my last one) and have been very active since then. So hang in there, be strong and stay positive. Your mind set is 50% of it!
I started to have mild hot flashes after brachy and that is the only symptom I have so far. No major aches and pains (other than gym related), fatigue or mood swings. I have been given the patches but have not started using them just yet as I have a few questions for my doc. I see a menopause specialist in March for a long term plan as the patches are just short term (I believe).
Have you started treatment yet? Please do keep us posted. Sending you lots of love and a big hug.
Happy New Year and stay strong xx