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Done with treatment but still anxious

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Rissag
Done with treatment but still anxious

I was diagnosed with cancer in April after months of waiting and scans. I first was diagnosed with squamous cell carcinoma 1b1 but the size of my tumor 6cm bumped me up to 1b2. On my pet scan it showed shadows in my para aorta and pelvic lymph node area so they scheduled me for a lymph node removal surgery and and ovary retransposition. They told me I was going to need chemo radiation and brachytherapy. I tried to do egg freezing before my surgery, but the timing was off w my menstration and they were only able to get 2 eggs. The dr said the chances of getting a embryo from just 2 is very very slim. So that was heart breaking to hear at age 33 and never had children, I thought I had quite a bit more time. I was starting to get pretty mad at myself because I had waited 6 years between my last Pap smear . Y ? I don’t know why I got so caught up with everyday life I had been so good w Pap smears before that and had never had a abnormal one. Me n my boyfriend had been together for 11 years , so naively I didn’t think I had anything to worry about .i do my surgery and it comes back my paraaorta was clear , thank god. But I had 1 microscopic lymph node involvement in the pelvic area. I live in the United States and I guess here if u have any lymph node involvement it’s automatically stage 3 . So those words just scared me to pieces. I just couldn’t believe how bad it was I had no pain at all. So they told me I was going to have to do 25 extended field radiations 5 chemo and 4 brachytherapy.my first 2 weeks of treatment were good but after that I started getting really bad bladder problems and it would make it hard for me to hold my bladder for radiation.and one Time my bladder was too full and I guess I had gas too so I had to get my body right in order to do my session. After that it just gave me some kind of complex where all I could think about is my bladder and if it was full enough or too much. I would get really bad anxiety before each external radiation the following weeks. And my bladder got so much worse and in my final week I got really bad stomach issues and in my last days I got a radiation burn on my butt. Before my brachytherapy they did a mri scan it showed that the tumor was pretty much gone but I still had swollen lymph nodes and something called ascites so that really worries me . It’s been a month since my treatment ended 2 weeks ago I had a pelvic exam which surprisingly wasn’t painful. I had to start using the dialators then too, which isn’t fun they did the ovary transposition surgery but I don’t think it took . A couple days after my brachytherapy I woke up just drenched in sweat  that happened a couple times and in the evening and early mornings I get hot flashes. My hair is also shedding really bad more than with chemo . I’m also really dry down there , I have to use a ton of lube with my dialator and even then it’s uncomfortable. My drs said to give it 6 months to see if it’s menopause or just from treatment but I think my symptoms are getting worse, so it makes me so sad . I thought when treatment was over I would be fine but I’m still so anxious and scared. I have a scan in November which will be 3 months post treatment to see if it’s gone . I just get scared that it hasn’t gone or if it will spread or reoccurrence. I think the lymph node involvement scares me the most.and I don’t know what the ascites is , they just said that’s unusual.my stomach has gotten better but still not completely normal, in the mornings it’s like I can hear water moving through it. My bladder did get better though.i get sad at the thought of not having children and then it takes me back to the beginning, had I went to my Pap smear sooner maybe my life would be different, I don’t know. I hope it gets easier with time but for now I just feel anxious if the cancer is gone and scared I’m going to be living in fear for a reoccurrence if is gone . 

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/23/2019 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Alice89

Hey. 

I’m a fellow 1b2 lady. I finished my treatment in May and everything you are feeling is completely normal after what you’ve gone through. It takes time to process everything that’s happened, I’m only just starting to realise now what I went through. There’s nothing anyone can say to stop you feeling scared for the future but if I find myself thinking oh what if it comes back I always try and challenge those thoughts with what if it DOESN’T come back. 

My mum had breast cancer 8 years ago and she says it does get easier with time.

If you ever want to talk then feel free to pop me a message. 

Alice xx

Rissag

Alice,

thank you, I think it’s the lymph node involvement that scares me the most . Especially since it made me stage 3 , I just get worried. Did you have any lymph node involvement?

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/23/2019 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Alice89

Hey,

I didn’t have any nice involvement but I did have LVSI so it was making its way there. That bit is what worries me the most as well.

A lot of people with node involved are still alive years and years later. There’s loads of ladies on here that have been clear for years.

It’s a weird one really like nobody can tell you yes or no if it will come back or not but if you spend your time worrying about whether it will then the cancer has won anyway. It’s so hard to do but try and focus on the fact that it was found when it was and you’ve done everything that you can to treat it.

Whenever I start worrying I always think back to when I had my biopsy and I was waiting for those results I knew it was cancer even before they told me, I haven’t had that feeling at any scan or anything since and that always makes me feel better. 

Alice xx

Rissag

Thank you Alice, I think I was feeling more anxious this week because I had a follow up with my radiation dr. And on Wednesday I have a follow up with my brachytherapy dr. Hopefully when I get those out of the way , I can have a break and try to relax.im sure come November when I have my first scan I’ll be a train wreck though lol

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/23/2019 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
emmz13

Massive hugs lovely, I think the fear and anxiety are natural given the circumstances, I think it’s sometimes hard to put those feelings to the side and focus on the positives. Your treatment was for a cure and it is highly effective. It’s possible that a lot of people have microscopic lymph involvement without ever knowing and therefore are never restaged and the chemo destroys it. Try to enjoy life, I hope you have only good news from now on lovely. I have found a few mindfulness and head space apps that help me when the dark thoughts get too much. 

Massive hugs lovely, 

love emma xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

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Moving forward from a cancer diagnosis