Stage 3c cervical cancer - treatment

Hi All,
I have been reading everyones posts on here for the last 6-8 weeks and it really has helped ease my mind and relate to others going through an uncertain time.

 

In August of this year 2020 I attended a routine smear after I was written to in March but due to Covid was unable to make an app at this time... two weeks later I had a phonecall to advise adnormal cells had been discovered and so therefore I needed to invetigate further. I was booked in for a Colposcopy that week (2 weeks after smear). 

A little after a week I was called back and again due to Covid had to go alone to hear my results. I had a strange feeling on the drive into the hospital and although i had no symptems to report something didn't feel right; a gut feeling. 

I sat down in the app room and the Doctor came straight out with it and gave the news that nobody ever wants to hear... "it's not good news I'm afraid, we have found cancer"... soon after the Doctor followed on by advising the positives to be taken is that its very early on and around stage 11b. 

A couple of week later I had an MRI which confirmed the inital diagnosis and I then had to await a multi-disciplinary board meeting to confirm my treatment. A couple of weeks later I was again contacted with a date for an app to discuss my treatment plan. The doctor was very helpful and explained that in order to preserve fertility and my chance of having children in the future they suggested a radical trachelectomy. Again due to Covid things were working a little differently and from that point on I was told to self-isolate as i could be called a few days prior to go in for surgery.

On Monday 16th Nov I had the surgery - they removed my cervix, lymph nodes and top part of the vagina and put a stitch in place to hold my womb. The surgery was a success and the surgeon told me that it went well and there were no visual signs of any disruption to the lymph nodes which immediately came as a huge relief. I was out of hospital in 4 days and I am now 3 weeks post surgery and feeling good / healthy and nearly back to normal. I keep a fit and healthy lifestyle and my doctor told me this will have certainly helped in my quick recovery.

Everything seemed to be looking up for me and then yesterday I had a conference call with my doctor to discuss the biopsy results... he came right out with it and said on testing the lymph nodes x2 have tested positive for cancer and so further treatment is needed asap. He said he has reffered me to a specialist doctor who deals with combined radio/chemotherapy treatment and i now have a meeting on 30/12 to discuss my treatment plan. He said that the tumour was bigger than originally diagnosed and because of the Lymph nodes testing positive he said they would put me at stage 3c for the cancer which is devestating news.

I now have to haev my eggs frozen and come Jan i dive straight into treatment. I know I will come out the other side stronger, wiser and with more grattitude for life and I had one day to cry it all out yesterday but now i am determined to beat this and enjoy life alongside cancer for now, with a view of being cancer free next year and being able to go on and be happy and healthy again.

Out of everything I have gone through so far, the worst part for me was the doctor telling me i need to freeze my eggs and I will be infertile after treatment. I always imagined myself having a family and this news is devestating but I am still hopeful and holding on to that little bit of chance of being able to become pregnant in the future... otherwise I will have to look in to surrogocy I suppose.

Onwards and upwards - on a positive I am so so thankful i went for my smear and this is treatable and we live in a country with full support and the NHS!   

Has anyone else had a similar experience? Would love to hear.

(Sorry to babble on but it feels good to get it off my chest haha).

Abi xx

 
 

Hello lovely

sorry to hear about your diagnosis it's such a horrid time... I can't say I understand what your going through as I am waiting to be staged but I just wanted to pop up and say that everyone on here will be around to support you. Everyone has different experiences but everyone rallying together gives me a sense of solidarity and I hope it will do the same for you..

be kind to yourself. You can do this :) 

xx

 

 

Hello :-)

Thank you, I already felt a lot better just getting it off my chest!  It's a horrible time but I am staying positive, focusing on all the good thats around me and the pro's of my diagnosis. 

I wish you all the best with your diagnosis and hope you find out soon as I think waiting around is the worst part!

xxx

Oh Abi. How awful for you. To almost be so elated you had got through 'the worst' with the op and then have this come to shock you. 

I really feel for you in terms of fertility, that must be hard to digest. It's great you can freeze your eggs and there are SO many options now but I know it takes away the one option you always pictured in your head. Cancer is an absolute bastard. 

I hope things get better for you and your next appointments are positive. 2020 has been so bad for so many people but I feel like the people on this forum have really just had it the worst, going through all of this at these strange times, alone at appointments and isolating for surgery etc.

 

Take care of yourself xxx

Hi Abi

It must have been so hard getting that news after your operation. Must be a lot to deal with. 
I'm at a similar stage to you as I'm 3C1 so can understand what you are going through from that perspective. It's hard enough without the worry about fertility so hope you are ok. 

xxx

Another 3C1 girl hear, starting treatment 8th jan, only got diagnosed 9 days ago and I've just cried everyday since, does it sink in eventually? How is treatment going? 

Hi every one ! 

Another girl with 3C1

Finally Ive finished my chemo radio treatment yesterday, 5 rounds of Cisplatin + 28 rounds of radiotherapy.

During the treatment beeding and back pain disappeared although Im having another kind of pain in my hips a mild pain but still there 

To be honest, I thought it was going to be worse. Doctors say that is the most invasive and though but you will manage it. 

Main symptoms were diarrea, weakness and loss of appetite. 

In one week I will have my brachytherapy (4 rounds )

Good luck girls we will do it ????

 

Hi Abi, apologies I've only just seen your post.
Have you started treatment yet? How are your finding it?

I just wanted to let you know that I was where you are now (sort of) back in May. After experiencing some symptoms, and difficulties with my routine smear, I eventually got one and it came back abnormal. I was booked in for a colposcopy within 2 weeks. 
During the colposcopy I heard those words that will haunt me forever 'Louise, I'm really sorry but everything isn't ok and I've found a mass. Around 7cm'. From that second on, nothing was the same again. 
After the biopsy confirming it was cancer, and scans, I was told that it had spread to 2 pelvic lymph nodes and I needed radical chemo rads. I was staged at 3C. 
I began my 28 rounds of rads, 6 chemo (ended up being only 5 as my kidneys weren't happy) and 2 brachy sessions on 9th July and finished on 28th August. It was tough, but I found the routine helped get me through it. 

(Top tip for ciaplatin if that's the chemo drug you're on: drink water all night, literally as much as you can and wee as much as you can. It'll flush it from your kidneys and make the side effects much less) 

I got the news at the start of Dec that I have an 'unremarkable pelvis' and there's no sign of recurrence or persistence of disease 

 

Really, I just want you to know that you're not alone  there are so many people here for you, including me. And I'm proof that your treatment can and will work! Stay as strong as you can, as positive as you can, and do everything the radiographers and nurses tell you. It will make treatment more effective

 

If you ever need to talk, please do get in touch  

 

Louise x

 

Hi Abi,

 

I am sorry to hear about your diagnosis, it should be very difficult especially after the surgery. For me, I couldn't have any surgery due to the size of my cancer. It was staged 2B from the beginning. I have been through chemo/rads/brachy and after two hospitalisation due to treatment implications I am stronger than ever. 

Regarding the fertility part, I was similar devastated as I was always thinking to have children. In my case, I didn't go through the fertility route to freeze my eggs as I was more scared the possibility the cancer  to spread further so I wanted to start treatment as soon as possible. 
I wish you all the best with your treatment and remember we are many girls out there in a similar situation! 

Hi, 

Thank you, it definitely has been a hard journey so far but I feel like I'm now in a positive headspace and I'm definitely going to get rid of my cancer and try not to stress about things outside of my control. I feel healthy and I feel happy day to day and then I remember I have cancer or had cancer and might have it come back in the future if I don't have chemo/radiotherapy. 

it's a strange one for me to get my head around really because going from stage 1 to 3 is a big jump but because my surgery was a "success" with clear margins etc the surgeon was suprised to see two lymph nodes tested positive for cancer. The cancer detected was microscopic 2mm inside the two nodes closest to cervix. Both doctors on the surgery side and radiotherapy side have said that it's likely the surgery removed everything but they can't be sure and because it was a grade 3 that's why it's now stage 3c and I have to have "mopping up" to prevent a return. Seems drastic seeing that my CT scan on Christmas Eve came back negative for any cancer. 
Im worried about having the follow on treatment and my consultant has told me if I decide against it that's also perfectly understandable and they'll keep a close eye on me. Confused what to do and I feel like I'll be kicking myself if it comes back and I didn't take the treatment but also I feel healthy and good mentally and I'm dreading the thought of having to do this chemo/rads in two weeks.

I hope your doing well too and thanks for listening ? xx

Hi Louise,

thanks for messaging :-)

I am due to start treatment on 8th feb. I'm just going through my second round of IVF treatment now. Egg extraction due to take place this Friday! Fingers and toes crossed it goes well this time round.

im feeling good overall. I've recovered well from my operation and I'm pretty much back to normal again, if anything I probably feel better as I've been eating well and juicing and taking supplements and vitamins and doing daily yoga and making much more of a concious choice to look after my body better. 
I also feel in a good place mentally - i feel positive and strong.

my main thought at the moment is having to put my body back through a stress by doing chemo / radiotherapy when my CT scan on Christmas Eve was all good - NED.
it's strange as my treatment they call it "mopping up" which is a preventative measure to reduce the risk of cancer returning In the future. My oncologist consultant has said that the lymph nodes showed microscopic cancer of 2mm in x2 of them and she is confident that the removal of them all along with my surgery would have been a success and this treatment will make sure the risks are reduced for a reoccurrence.
She has also said to me that if I decide against the treatment that also is a perfectly understandable choice.
I'm so undecided as I desperately want a future with kids and my health and I feel that the treatment might harm me further when nothing is currently wrong.
I don't know if it's a case of being in denial on how bad my diagnosis was but because my surgery got rid of all cancer and this is just a risk prevention measure I'm feeling very unsure if it's right for me.
My oncologist has said if I opt against further treatment then they'll keep a close eye on me with scans for the next 1-2 years, whereas if I have the treatment my follow my follow on plan is a yearly  phone consultation which leaves me feeling vulnerable if I'm totally honest. 

I know whatever choice I make I'll stay strong... but I think the kids factor is weighing down on me loads and maybe influencing my thoughts against additional treatment.

ive got lots to think about... 

It is so reassuring to hear your story and successful outcome tho and it's amazing to hear off people in the same boat. 
thank you xx

 

Hi Louise, 

I'm new here and can't seem to figure out how to send a private message so I'll reply to this post of yours! 

I was newly diagnosed with 3C1 due to lymph node involvement and about to go through 5 weeks of radio and 5 sessions of chemo. I was hoping to speak to someone like yourself who's been through it and hear how you found the whole process of radio/chemo? Did it get v tired towards the end? Any long term side effects? 

Thank for any help! 

Jenny

Hello Abi,

I haven't been on here for a while, however I saw your post today and it's a carbon copy of what happened to me. I can completely empathise with your situation and how you must feel. I was initially diagnosed in September 20 with a 3mm microscopic 1a1 tumour on my cervix. I was told a LLETZ might be sufficient to treat it. I had the LLETZ but they didn't get a clear margin. MRI showed no spread and no obvious lymph involvement. However the LLETZ histology showed a focal area of LVSI, so I was referred to Royal Marsden to see surgeon who recommended hysterectomy or trachelectomy. I had radical hysterectomy - conserving ovaries, before Xmas. They took sentinel lymph nodes as a precaution, but surgeon said he very much doubted any residual cancer due to the size of the lesion. I got histology results back in Jan: extensive LVSI on cervix plus X2 positive obturator nodes. Plus close margin at top of vagina. Restaged to 3C1. This was the most difficult to deal with for me and I went through a difficult time processing it all. I then snapped out of it and thought I must stay positive and throw everything at the b******!
I have just finished 5 weekly rounds of cisplatin, 25 fractions of radiotherapy and I'm about to start brachytherapy next week (3 sessions).

I still struggle to get my head around it. Having had no abnormal smears previously or ever missed a smear test.

Wishing you the best of luck! Stay positive. You can and will do this! 

A

dear AeronaW.

Hope you are doing well and all are sorted for you! I am currently on the same boat as you were with adjuvant chemorads recommended post surgery… how did you find the chemorad experience on a adjuvant doesage? Also, regarding the hormone, did you end up on HRT post radiation? How do you finding it? I am still deciding… it’s been such a difficult decision after RH… would be grateful to hear your experience.

Take care xx

Hi there @Future thank you for your message. I’m now 7 months post treatment and I feel ok. During my treatment the main thing for me was feeling extremely tired. It got worse the last couple of weeks ( I did 5 weeks) cisplatin with concomitant radiation on pelvis followed by 3 brachytherapy sessions. This was the one I was dreading the most but wasn’t that bad. It’s over with in minutes. Regarding HRT I was never offered it and it was never really mentioned at my follow up appts, but I started to get awful hot flushes a few months ago and the dryness was not nice. I asked my consultant about it and straight away she prescribed me tibolone which I now understand is actually an anabolic steroid which has the same effects as HRT. I still get hot flushes ( but less so I’m assuming it’s going to take a while to be fully effective as I’ve only been on it a few weeks). It sorted out the dryness. It seems there are loads of types of HRT. How are you doing on your treatment? How far in are you? I wish you the best of luck. X Aerona

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Hi @AeronaW I am so pleased to hear that you are doing well. Hope your meds work the magic for you soon. I had RH without taking ovaries as the consultant thought the chance of needing Chemrads was small. They found 1 micrometasis node at 1.5mm thus I am staged to 3C1. I am offered option for ovarian transposition or HRT if I want to save my hormone. This is where I am currently… it’s so hard to make choices while i don’t know enough of neither, and the surgeon would make decision for me.

in the meant time, I am currently going through IVF as the consultants suggest it’s my last chance to save some embryos in this life… We have no children yet. So quite emotional.

My regimens seems to be exactly same as yours, Cisplatin weekly x 5, 25x Rads IMRT and a couple of sessions of Brachytherapy. My xmas and NY are definitely not going to be what I hoped for… Both consultants told me that HRT is as good as my natural hormone if not better (Apparently they are in the process rewriting national guideline on HRT, as many women could have benefited from the HRT to prevent Osteroporisis and heart disease if it was not the misinformation in the past few years). But the conflicting info on google doesn’t make it easy for me to decide. I wish there are more info on the radiation side effect on hormone (not just infertility) and they tell us ladies these things and provide a solution in advance…Hope your hot flash and dryness goes away soon.

I am anxious about the chemorads although the consultant said it’s on the lower dosage given it’s post surgery adjuvant (vs. main treatment)…Still, it’s hard for me to imagine, i worry long term bond damage etc… glad you had manageable experience, I assume u had IMRT? you must be very fit and healthy to begin with. I hope I respond to it well just like u… not getting nausea/vomit, diarrhoea, painful stomach, brain frog etc… u give me hope! Hope you have a nice, cosy Xmas and NY ahead xx

@Future my ovaries were left too as they really didn’t expect there to be any residual cancer. Like you, micromets were found but in two nodes hence the adjuvant treatment. I’m older than you; I was 42 when I had the diagnosis. I resigned myself to fact I had to accept I’ll never have children it wasn’t meant for me. I did consider egg freezing but decided too stressful to go through all that plus chemorads. Your ivf with embryos sounds like a better plan as more probability of things working. I’m seeing how HRT goes. There are also other ways such as adoption. Have you actually started the chemorads yet? I had my RH just before Xmas last year so similar time of year. All very surreal. Stay positive and know you can absolutely do this. Stay strong. Think positive thoughts.

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@AeronaW, I am week 5 post RH. 2 weeks egg retrieval so it would push my chemrads into Middle Dec… you think I am going to be ok with the IMRT, brachy and cisplatin sensitiser on adjuvant dosage… I am a tiny person, I worry I will vanish…

In my last post, I meant to say that my Surgeon wouldn’t make decision for me, and left for me to decide. I am tempted by the idea of moving 1 ovary to preserve my hormone but fearful for the small chance of metastasis, chronic pain, failure and another operation (the egg retrieval is next week under general again…)

My lady clinic oncologist (in her 50s) talk very delightfully about HRT, especially the estrogen only transdermal patch and gels. She said it’s recommended for women in our age. I am only a few years younger than u, we are both young in the definition of menopause (50). She said its a good options. I hear things from US women using it as beauty and young restoration products to keep skin looking nice etc… for me, Beside skin aging, i am equally and more worried about bone health (osteoporosis) and heart health… and hot flash etc…

It’s so nice to talk to you, we share so much in common… Be positive with having a family if it’s something on your mind that makes you smile, adoption is a good choice. It’s the love and hearts which make the family.

I am still freakin out thinking about chemorads…

Wish u a lovely Festival season xx