Feeling so low and alone

I thought I would try posting here as I’m feeling very sad and alone right now. Hoping I can find someone in a similar situation to me that is going through the same thing or has got through it and can give me hope. I’m 32 and gave no children. Life is cruel the month we planned for me to come off the pill was the month I found out I had cancer.

I was stupidly late going for my next smear test, something I will regret for the rest of my life. I’ve been through it so many times in my head and can’t understand why I didn’t book earlier, but there is nothing I can do now.

I got diagnosed with cervical cancer on Christmas Eve 2021. They didn’t tell me what stage I was until about two weeks later. Originally I was told I was 1b1, then referred to the royal marsden in London to hope for a trachelectomy. There they told me I was 1b2 and then had an EUA to take the lymph nodes around the cancer to check it hasn’t spread. All scans said now spread, then the lab results said one of the lymph nodes showed spread so I’m now stage 3c.

I was then told I need to have radiotherapy and chemotherapy to get rid of the cancer, which meant my fertility will also go. I managed to get my eggs frozen, but sadly only managed to get 3 eggs which my partner and I made 2 embryos from. I was on the contraceptive pill for many years and they said this could be a factor as to why it was so low.

I’m about to start chemotherapy and radiotherapy next week. I don’t know how I can cope with the cancer, loss of fertility and starting the menopause. It’s too much to cope with. I’m scared I won’t be able to have sex again without pain, as radiotherapy can have side effects. I feel so out of control of my life and body, I don’t see how I’m supposed to cope/ process/ live with this. Also now seeing every person I know is pregnant or having babies. The pain is very real and raw at the moment. I have good days and bad days, but waking up to this nightmare every day is going to take a while to get used to. I’ve been having some great days feeling positive and then suddenly the pain hits me and I can’t cope. Is anyone else struggling? I walk onto the oncology ward and everyone is in their 80’s and can’t relate to the pain.

7 Likes

Dear Katie,

I have just seen your post, and although I am not in your position with youth, I wanted just to reply and send out a virtual hug. Life can be very cruel sometimes. I am so sorry to hear that you’ve got stage 3 cancer at 32, when you were planning to have children. As you say, the treatment will plunge you into menopause - but you will survive.

You only got 2 embryos, but you got them. We don’t know if there will be anything viable you can do, but you’ve done the best you can. No-one knows what hand fate will deal them. I have been clear of 3C2 for a year now, so the treatment is very good. It’s hard, and it will be doubly hard for you because of the emotional effects of losing fertility. Please ask them to refer you to the psychologist associated with the oncology team - you need someone to talk to. There are lots of young ladies on this forum with cervical cancer of all stages, so I hope someone who can relate fully to your position will reply soon. It would be great to find a ‘cancer buddy’ on here - someone who is at the same stage of diagnosis and treatment as you, so that you can share stories and encourage each other.

It’s going to be hard, but at the end of it you’ll have the potential to live maybe another 60 years and there may be all sorts of adventures life can bring your way. There are also other ways to have a child in your life - so don’t give up your dreams… There is no reason why you won’t be able to have sex again. There are things you can do to keep that area in good condition (:upside_down_face:) but the first thing is to get you well, and kick that cancer out of your body, so that you and your partner can enjoy life together. Xx

5 Likes

Hi Katie,

Like Jacks I am quite a bit older than you (55) so i didn’t have to worry about fertility and menopause. But during my treatment i met 4 other women going through the same treatment ages wise they were 31, 32, 35 and 62. Whenever I felt down i just thought about them and all the difficulties they were facing this is a horrible disease and unfortunately does affect a lot of young women. Treatments today are excellent you have youth on your side so :crossed_fingers: you’ll cope fine with the treatment
But i think it would really help to talk to someone about how you feel its a terrible shock to find out you have cancer and then take onboard the issues regarding fertility. For now try and focus on your treatment and getting rid of the cancer just take one day at a time.
There are alot of young women on here in similar circumstances so hopefully one will get in touch.
Take care I’ll be thinking about you if you want to ask anything get in touch xx

.

3 Likes

Hi Katie. I am so so sorry to read about what your going through. I was recently diagnosed with 2b and am waiting for chemoradiation. Im 35. I was told they couldnt collect eggs because they though it would risk spreading it or making it worse. Its devastating news i have felt like i am mourning and in such grief at the thought of losing my fertility and starting early menopause. Ive had days where i am ok and other days where im so overwhelmed i cant cope. All i can say is hold onto the hope that you have your eggs frozen. I honestly know if may feel like theres nothing positive but curing it really is whats most important

3 Likes

Hi Katie, just wanted to drop you a reply as you’re not alone, am sending you lots of hugs. There are some similarities in our situation so sharing my story here, and please feel free to drop me a DM if you ever need to vent/need support.

I was initially diagnosed as 1B1, after the cancer was detected during fertility investigations in late 2020 - a huge blow. It was then upgraded to 1B2, but I was given the green-light for a trachelectomy in Jan 2021 as we were so eager to preserve fertility. All was clear after the surgery but unfortunately a scan 7 months post op showed several chunky masses further up my lymph node chain - it was classed as a recurrence but would equate to 3C2. I’ve just finished 7 months of chemorad + additional chemo treatment. We were able to fit in 3 rounds of embryo freezing between the pre and post trachelectomy windows, which we are so thankful for, and we are now looking into gestational surrogacy. That said it’s hard to know when to try for children, despite our being more than ready, when there’s still a 50% chance that the cancer could come back.

On some of the other things you referred to. I was advised that vaginal dilators can help with the sex side. I only started using mine very recently as I had a bit of a mental block about it but I’m so glad I did, not half as scary or as painful I thought it would be. HRT has been great for managing menopausal side effects (hot flushes are real!) and there are plenty of options to explore to get the best one for you.

It takes time, as you’ve said, to process the pain. The losses we experience through this are not easy to bear but the pain does get less raw and there are definitely silver linings and bright spots even in the toughest times. I’m not sure what the future will hold for me but I feel lucky that the cancer was caught (both times) whilst there was still a chance of curing it. Wishing all the best for your treatment xxx

4 Likes

Hello, thank you so much for your kind words. It helps hearing people have come through the treatment and are okay. I’m just finishing week 3 of radiotherapy/ chemo and it is very exhausting and tough, but I’m getting there.

There is just so much to process and get through at the moment, but I’m trying to get through one step at a time. I hope I do live for another 60 years, struggling to imagine what my future will be like. But hopefully once I’m through treatment my partner and I will look into surrogacy and or adoption. Xx

Hello, thank you for your reply. It does help to think that other women have gotten through this and can survive physically and mentally. As I felt very alone at the beginning. I have signed up to Macmillan counselling and they have put me on the waiting list to see a psychotherapist which will hopefully help me. Thank you for your reply, it does help to gear other peoples stories and recovery xx

Hiya, thank you for messaging and I’m so sorry to hear your story. It is so painful at times and so much to process. Have you started treatment now? I’m finishing week 3 of chemotherapy/ radiotherapy and finding it so exhausting, so it has taken my mind off the fertility sadness a bit.

I know exactly what you mean though about mourning the fertility and menopause side if things. I’m just scared of the unknown and what my body will be like, but hopefully it won’t be as bad as I imagine. I hope you are okay and having more good days xx

Hello, thank you :blush: it does help to know I’m not alone. Thank you for your kind words too. Wow there are a lot of similarities to our stories. Can I ask how old you are? That’s good you got to do three rounds of IVF.

Surrogacy is an option we will be looking into too, but like you said, how do you know when to start the process as it would be good to be clear of cancer for a good amount of time.

I’m finishing week 3 of chemo/ radiotherapy and finding the treatment tough/ exhausting every day. But knowing so many women have gotten through it and hopefully find these physical tough times temporary gives me hope.

That is good to know the dilators aren’t as bad as I dread. I’m also terrified as to what the menopause will be like for my bones/ health as I’m usually quite an active person. I’m glad HRT is going well as this something I will be on. How long did you wait before going on HRT?

Thank you so much for messaging and I hope you are doing well now. Wishing you all the best xx
Thank you so much for messaging xxy

1 Like

Hi Katie thanks for message. Its so much to process isnt it. Im just finishing week 1 of treatment. I keep thinking 1 down 4 to go. My emotions are a little all over the place and i totally understand the worry on the unknown. I hope your treatment goes well x

Hi Katie,

How is your treatment going? And how are you feeling? I am 31, and was diagnosed with “early stage cervical cancer- a hysterectomy and I’d be good to go…” not quite. My pet scan showed lymph node involvement and it was bye bye surgery and onto chemo and radiation. I am 1 day of chemo down, and 4 radiotherapy and I am already thinking… how I am going to make it to week 6?! I have two little boys, 3 and 6 so I don’t know what you’re going through emotionally with the loss of fertility, but I can imagine it is awful. I hope you’re hanging in there!

Hi Katie,
I just wanted to send you a message because I feel like I can relate to how you’re feeling. I’ve just turned 37,I also missed my smear appointment and waited too long ( I’m so annoyed with myself now!), My oncologist thought I was early stage 1 to begin with but as more tests were done I ended up at late stage 2,I had a full hysterectomy followed by chemotherapy, radiotherapy and brachytherapy. I’m now also going through the menopause.
It’s tough, there’s no sugar coating it! I remember getting to my 3 week stage of radiotherapy and thinking I wasn’t going to be able to finish because I was so incredibly exhausted but I powdered through and got there in the end. I finished my treatment a couple of months ago and I’m thankfully in remission. I feel like I can relate to you though because I’m struggling with recovery - I have alot of pelvic pain and swelling and bladder and bowel issues and I’m so exhausted all the time. I feel really isolated because everyone is just getting on with their lives and I’m stuck. All I can say though is that it does get better it’s just slow. I’ve been seeing a psychiatrist and that’s really helped and I’ve signed up for an online group cancer counselling session which I’m hoping will help too. If you need anyone to talk to please do feel free to message me :relaxed:xx

2 Likes

Dear Katie,

I’ve just seen your post, I was reading because I was feeling low & alone. I was diagnosed with stage 3Ci in Sept ‘20, I was 38. My partner & I had just been approved for IVF, we’d been trying for a few years with no success.
Life can be very cruel at times.

Don’t beat yourself up over you smear too much, I was going for my test every year for 6 years because I had some changes & HPV, I’d had a LLETZ in 14’ but still getting checked. I had my last one in Jan 20’, I had a small amount of spotting just before which I told them about as it was the first time she was worried as my smear was fine. I had it again in Feb so contacted my GP. They tested me for STI’s & did some bloods, which all negative & a waste of time. I contacted my GP every month but they wouldn’t see me & just kept prescribing me medication to stop the bleeding. It got worse every month until July, when i rang my colposcopy nurse who told me to go to A&E. I was sent home, I ended up back within a week & was sent home again. With the help of my nurse, I managed to get seen at another hospital to get diagnosed. I moved house in ‘19 so my nurse was at a different hospital.

When having my treatment no one was my age, everyone was older, I found a few people on Instagram going through similar treatment but they all had children already so they didn’t quite understand what I was going through.

Today I just sat and cried as something I was watching was just lots of women being pregnant & giving birth. I still can’t believe that’s not going to be me. My partner & I managed to make some embryos too before my treatment. We are just starting to talk about surrogacy, tho, this is a minefield & feels like it’s just for the rich.

I hope that you’re treatment is going well, I know that it can be tough, exhausted & lonely. Just try to think about what’s happening at moment & know that you are not alone. I’m speaking to a pain psychologist as I’ve having problems with pain & my bowels since. I think I need to speak to other people as well which I’m going to look into.

If you ever want to chat, please feel free to message. :two_hearts: xx

2 Likes

Hi Katie,

How are you? Your treatment must be finished by now? Well done you for making it through. Hope you are enjoying some very well deserved rest!

I’m 34. I was 32 when first diagnosed… it’s not an easy age for it, it sometimes feels like all people talk about in their thirties is babies/childbirth/parenthood!

I was prescribed HRT straight after radiotherapy. I started it after a few weeks’ delay but it really helped with the symptoms so I’d have been happy to start it sooner in retrospect. The first HRT wasn’t quite right for maintaining my oestrogen levels so I’ve been on a new one and am liking it so far (energy, skin etc all better). It takes some experimentation but am happy to be on it.

Hope all is well with you xx

What a journey you have been put through. So glad to hear you’re through the other side and wishing you the best with your fertility journey and pain management :yellow_heart: xx

1 Like

Hi new, rereading your response - may ask, would you have opted for chemorads the first time around? And how are you today? Best wishes xx (and newly diagnosed 1b1)

Hi Ana, sorry to hear. How are you feeling?

I am doing really well, thanks. The next year is really important as the risk of re-recurrence (not sure that’s a term!) is still high. But I’m feeling strong, healthy and happy and making the most of post-treatment freedom!

That’s a complicated question. Ultimately our decision back in 2020 to have a trachelectomy (vs. chemorads) wasn’t taken lightly and it was the right one for us at the time based on all the information available then (and we did a lot of research and speaking to experts). Even if I had had chemorads then, the recurrence could still have happened (though the chances were a few percent lower). Having the trachelectomy meant I had time for 2 extra rounds of egg retrieval that took us from 1 embryo pre-treatment to 10. I am so grateful for the chance that gives us to have multiple biological children. I understand that others in my position may feel differently. Ultimately cancer is a brutal and unpredictable disease that forces us to make difficult decisions balancing risks we are willing to take on quantity and quality of life. The silver lining for me has been loving and appreciating life more than ever. I wish you the very best for your journey xxx

1 Like

Hi new, I am mostly ok, just feel heavy in my heart. Ah so they classed it as recurrence, it wasn’t that they didn’t get it all out the first time?

Thank you for the reply xx

1 Like

Sending you virtual hugs :yellow_heart: xx

Katie, this post spoke to me. Im 34, no kids and
Finally found my life partner. I had an abnormal pap, LEEP, and when they told me I had cancer, they were hopeful it was microscopic. I went for 3 MRIs and a CT scan and everything looked good. I was scheduled for a trachelectomy this upcoming Thursday as I wanted to preserve fertility. They scheduled me for one more MRI which I did last week. On Sunday night, I got a call saying the most recent MRI showed I was actually staged at 2B. How could this have been missed??? I had 4 prior scans which were consistent with stage 1. Now, I am no longer eligible for my trachelectomy and having to make the decision of whether or not I delay chemo/rad to do egg retrieval. Was it missed, or is it aggressively growing? If I wait, this will push my treatment out 6 to 8 weeks and my cancer can potentially spread, or I move forward with treatment and give up my chances of having a child through surrogacy. This is not a decision I was expecting to have to make virtually overnight.

I connected with how you are feeling and had to share. These feelings are so isolating - it’s super unfortunate that we are in this group, but its comforting to talk to others who have shared experiences.

Wishing you the best

1 Like