In Remission or NED stories

Hi there.

Im looking for some positive stories of your journey from some of you lovely ladies.

Im finding things extremely hard at the moment and i thought knowing of some positive journeys similar to mine might give me that wee boost that i need.

I will make this short.
Im 38 with 2 children.
I was diagnosed with Stage 3C cervical cancer in April 2022.
I was given radiotherapy,chemotherapy and brachytherapy and treatment ended in August 2022.
Im very lucky as so far all check ups and scans etc have been positive and show no signs of disease at the moment.
Im sure like some/all you ladies out there, the longer it goes on i cant help but worry it will come back.
I really did think that treatment was my biggest worry but little did i know that the aftermath of it all is by far the worst, not due to side effects etc but the mental side of it all, the worry of reccurrence, without blabbing on too much,im really struggling to deal with it all, so i thought some positive stories from yous would help give me the hope and boost that i need.
Thank you very much :smiling_face_with_three_hearts:

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I’ve shared my story quite a few times so i don’t want to be boring. However i recognise your anxiety so i thought I would jump in here.

I was 34 with stage three and two small boys. I am 61 years old now and about to be a Granny! 27 years and counting…

Karen

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Absolutely fantastic🥰
Thank you very much for sharing that with me.xx

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Hi @Petesdragon, such a fantastic and positive story​:hugs:. After your histerectomy from 1997 you had the normal treatment radio-chmio with ciplastin ? Thank you :hugs:

Yes i did but i was allergic to cisplation so i only had two doses of that. The treatment wasn’t without consequences but i was overtreated with radiotherapy by today’s standards as we didnt have PETS then and CT was just coming in. I did have MRIs though.

Hi @Petesdragon. Thank you :hugs: On my firts appoiment when I found the doctor told me that tumor had around 3cm. I did CT total with contrast (pelvis / abdominal) before surgery, on the firts CT the tumor had 2.7 cm. After I had the sugery radical histerectomy, all out, including ovaries + radical lymphodectomy both parts. Came histopatologic result, limph nodes clear, margins clear but the tumor was bigger in the larger point. On my histopatologic result was described the tumor and they mentioned that additional to tumor found parts with CIN3 and CIS. Honestly I don’t know what means this but I think when they they measure the tumor was important and was included on measure. My stage is 1B2N0 LVSI, G3, 1B3 (Figo2019). After surgery, 1 month later I did MRI witn contrast + CT with contrast including lungs, all clear. All this scans I needed for board tumor. On boar tumor they decided that I need for protection because of LVSI +G3 radio+chimio. This week I have a new appoiment to start radio +chimio, they will tell me exactly the treatment. :hugs::hugs::hugs: Also nobody asked me to do PET CT, they asked and wanted morevMRI with contrast.

Yes, it does sound like they are just being cautious. Looks good to me!

@Petesdragon , I read your story and also your posts and you are a brave women. You grow your kids and you are granny in this moment. I have 39 years old and one litle baby 2 years old. After all this I am thinking what to change in my life, diet, type of job not be to strees.
What you change regarding daily diet? I am reading about this, all say without meal, without sweets, without…, without…but if I will ask a doctor they say, continue your life as normal, you need also meat, etc
Till now I don’t drink anymore alchool and I don’t want to drink anymore, also in the past I was drinking only on some ocassions, I try don’t smoke anymore, I still smoke sometimes IQOS, I fight with me, I start not drink anymore sweet juice only water, I try to avoid sweets but is really dificult, meat I still eat.

Will help me one advice. Thank you :hugs::hugs::hugs:

My tip for you would definitely be to not smoke! Its one of the strongest risk factors for cervical cancer. The rest of it…just live your life and be happy!

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Hi.
I had very similar 2 u and yes the treatment was gruelling,didn’t think i would be able 2 cope,but we do. I’ve been clear/ned for 2.5 years now. All my follow up’s haven’t been good,had bleed,but was polyp,which was removed. I’m still in pain in my groin area,just can’t seem 2 get passed that no matter what i do. Having said that i would rather have a bit of pain than the alternative.
It is a struggle tring not 2 think about it coming back,but u have 2 stay positive about it all. So keep going,i’m sure we will come right in the end.
Xxxxxx

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Hi, I had today the appoiment for radio chimio, next week I will start. Because I am obsessed about this type of SCC grade 3 and also about the marker KI-67 that in my case is really high I go also for a second opinion. In this moment I don’t know what to do because the opinions are diffrent.

  1. my team, my firts team of doctors, told after histerecmy radical, with clear lymph nodes, they removed 54 lymph nodes, with LVSI present + grade3 they told me to do radio+chimio ciplastin
  2. the second opinion told me to do radio+chimio ciplastin and after this treatment to do 6 session of chimio taxo+carbo, that hard chimio. The oncologist doctor told me because is KI-67 high positive on the tumor cells this means a really agressive tumor and means that in one year/2 year or maybe more you will have metastase. And she told me if you want to live you need to do the second round of chimio.

I feel that from stage 1B2, with lymph node clear, with radical histerectomy including ovaries out, I am in a such a bad situation.

I don’t know what to do…

I know the difficulties of chemo and radiation. My suggestion, follow your doctor’s recommendation, when possible. I couldn’t handle the 6th chemo treatment and opted out.

Hi @reddbonz1 thank you for your answer, I started last week the treatment radio+chimio ciplastin, I did 2 sessions of radio, on Monday I will have 1 chimio. Regarding the second opinion that I received I am still debating. I thinking to ask opinions also from others countries.
What type of CC you had ? What stage you was ? You did chimio taxo+carbo ? Thank you again for your answer :hugs: