stage 3 CC?!! (children mentioned)

hi guys,

just been told im at a stage 3 as the ‘beast’ is leaning on my ureter and so too far gone to do a hysterectomy. They are going to do 6 months chemo and radio to try and shrink it and get rid. I was wondering has anyone else on here at such an advanced stage as it seems like ladies are luckily all mainly at stage 1… Would be nice to hear from anyone that has come through the other side with it?? they havent told me much about the side effects except the hair loss which im dreading and the low immune system which sux as i have a toddler who goes to kiddy groups where there are always bugs flying around…

feeling blessed to have 2 DDs before this all started!

Hello Kitty. I totally understand what you mean about 'lucky' ladies being stage I as I too struggled to find ladies of stage 4  like myself. After a while I went straight out there,  just posted asking for ladies of my stage to please respond to my messages - I was getting a bit desperate! But I had  replies from fantastically brave ladies of stage 4 they are out there!! I think sometimes early stage ladies  are scared to reply to us  because they don't know what to say.  Maybe as you described them 'lucky' and so would I in a kind of way, not meaning it in the true sense of the word but if you're gonna get it - this is the stage you want to be  diagnosed at, right?? who wouldn't agree with it in that context.

For you Kitty the trick is not to write yourself off - all the stage 4 ladies I've 'met' are doing fine in a fashion,  and I'm sure  they will tell you that themselves if they come across this post.  We do like to support each other as I feel we're in a 'unique' group the bravest of the brave, being hit with this damned diagnosis.

Everybodies treatment plan varies though most will experience surgery,  chemo, radio, brachy or all of these like I did.  We all react differently too, some have it real hard, some have it ok, others are somewhere inbetween.  

As your treatment plan involves chemo you will more than likely lose your hair.  For me it didn't become such a big deal.  I had a fantastic wig supplied by Macmillan.  I don't think I worried too much about it because I felt it was the least of my worries and I knew it would grow back; you may have the same attitude about it - I found it very liberating actually - my 'hair' sat beautifull every time I was going out - just had to pop it on!!  

As for being sick or nauseaus,  I was nauseus for about the first few days immediately following chemo.  As the days went on I felt better & better until I was due another cycle.  During that time I was able to go out & about as 'normal - me & my new hair.   I did have some constipation but they arm you with ,all sorts of medication to keep you on top of that. Other side effects can be mouth ulcers/sores but I had none of that.  

The other worry for you as you say, will be that of infection, especially if you're exposed to it at the kiddy groups or if your baby picked up a bug & brought it home.  Maybe you'd consider not taking baby to these groups for the duration of chemo at least?

You might suffer all or none or just some of the side effects, none of us ladies have exactly the same experience of the treatments, so I'd say go into it knowing there's a chance you'll experience some effects, don't 'expect' to have them all!  Hopefully they will be mild and you can cope.

Let us know how you get on.

God Bless

Sharon

hi sharon,

youre an inspiration that you have managed to get through such an advanced stage. You give me, and others that read these, hope and like you say we will all react differently, at the minute my emotions are changing hourly from nervous to reassured to highs to lows but thats expected. Im actually looking forward to the wig ida, im going to get a whole array in different colours and styles i wont be hiding the fact its a wig and have some fun with them. As for the side effects im seeing more and more on the posts from ladies suffering mainly from the radio. At the minute im in constant pain where the tumor is pressing on all my organs and it feels like my whole cervix is just being pulled downwards, i managed my last birth without pain relief but this is definitely up there with pain scoring, the paracetamol works during the day but at night it seems to flare up. Either way im just trying to arm myself with as much info to be prepared for whichever effects do take hold, so far the counsellors havent mentioned much ie cystitis, pins n needles, bladder, bowel probs etc, they want me to ask the questions but need to know which ones to ask. I think im getting my head around it all, the idea of not having the option for more kiddies was the main blow but Ive overcome thath quite quickly. I just feel bad as Im the one thats active and independent and to have to rely on others to support and help me is dreadful, ive never been the sort. Hubby will take lil one to groupls but maybe not as many as we do now. When is your next scan sharon?? Are you still having any long term effects from your treatment?? Its such a sad story that ladies go through such a nasty hurdle in life and then get stuck with more complications after all theyve been through. Are there any sites to go on to petition for earlier /more regular screening for ladies?? Its a joke its only started at 25, so many lives could be improved.

 

Lovely to 'meet' you. xxx

so far ive done the 2 sessions of chemo and no side effects as yet... all seems to be going well. hope all is going well with everybody else!!

thinking of u all xx

Hi Kitty_Merchel,

Glad to hear your treatment is going well.I hope you sail through the rest of it,

and come out the other side with great results

Takecare

Becky x

Hi Kitty I'm at stage 2B and have just went through my first chemo last week, I'm not going to lie it was pretty awful for the first few days then gradually improved so by day 7 I was totally back to normal (makes me feel better knowing its a week of yuk and I'll be fine again). Obviously everyone is different and will depend on what chemo you're getting (I'm getting 3 strong blasts of paclitaxil and cisplatin first before doing the chemo/radio combo all summer). Your emotions will be all over the place but its amazing how much your attitude changes in the space of a few weeks. I find it better to focus on what's happening now and taking each stage as it comes ie I'll worry about radio effects, menopause as it comes right now I need to get through these 3 sessions. I can't help look at people on this at the cin as lucky too although understand the worry they'll feel but with no surgery, chemo or loss of fertility it's great it's been caught so early for them! I've also got young children and worried about the infection thing but think its just a case of being on guard if they pick up anything otherwise need to carry on as normal and hope for the best. So blessed to have them and they'll be your best motivation no way they're being without their mummy.xx

Hello Kitty, so glad all is going well, I hope it continues.

It's good to hear from you again, please keep letting us know how you are getting on.  We really do care & will be here to follow your progress through the treatment.  

God Bless

Sharon

Hiya. Felt the need to post. I haven't been diagnosed with cc but I'm awaiting results after loop.came accross your post on the latest posts bit. After reading these posts I felt I needed to comment. 

 

Can i just say your all an inspiration and have actually put my mind at ease if my results arent clear when they arrive! Your all really strong and think its brill that although its a scary time you have managed to post positives! Thank you! 

 

Hope all your treatment goes well. Sorry for invading your post xx

Hello , i hope you dont mind me asking and hope you dont find my question offensive in any way , just wanted to know how come you two ladies,Kitty and Bogeywoman were diagnosed stage 3 & 4 ?

Asking as all leaflets i have read so far,say that once abnormal cells are found,it will only develop to cancer in 5 to 10 years time if left untreated (which is why smear tests are every 3 years), and early treatment is almost 100% effective .

I understand if you ladies dont want to share your full story , not everyone want to talk about it , but would love to here it if you dont think i'm being too nosey .

Best of luck to both of you xxx

Hi sondre, I know you we're asking the other girls there but just to say I had a smear in 2012 that was clear and that's me at stage 2B. A lot if people on this have had clear smears then find out they have cancer (think it depends where in the cervix it's growing - sometimes it's up higher) and also it's usually symptomless until you are further on, it was only from me having  my son that mine was discovered, the pregnancy may have sped up the growth but its saved my life finding it.xx

Hi Maz , thanks for your reply .

Really sorry about your news :(

xxx

Hi there Sondra, :-) 

Yes unfortunately not all cancers are picked up by the smear tests. My cancer was diagnosed at stage 2b and I also had a negative smear result back in 2012. Adenocarcinoma Grows from the gland cells and situated higher so the test can be ineffective. I was going to my GP with symptoms but was told I had an infection and given antibiotics. I had to keep pushing to get the colposcopy in January this year.

Good luck ladies. Positivity and hugs.

Nicky xxx

Just quickly to Sondra...

Hi sweety, yes I thought the same as you, get checked regularly and all will be OK but in 2oo9 i had my last smear which showed changing cells but after 6 months went back and it cam back clear. My next smear was due in 12 but as i was pregnant they didnt do it, the following xmas day I had my little girl and had there been anything that had developed too far the cervix wouldnt have opened and there would have been complications, luckily i had no probs at birth, didnt even get to the labour ward so no drugs etc just sat in front of a bunch of ladies waiting to go into labour oops. the nurses didnt believe me when I said she was 'on her way' lol. So not sure how big the tumor was when i gave birth, if it had even developed into a tumor or was just starting to manifest... who knows but whe they said stage 3 with aggresiveness at 2/3 i was thinking there was no turn around point.

 

I did mention it to my oncologist that I wanted my husband to get the HPV jap/immunisation/screening or whatever it is they do as he obviously carries it too now and I didnt want us to be passing it back and forth but apparently over half the population carries it like the common cold and so they wont do anything until it becomes something sinister... grrr makes your blood boil. So many carry the virus like an STD but we dont get screened for it, hell most people havent even heard of it and personally i think thats just a joke when we all know about chlamydia but, which can be cured with antibiotics!!! Also the fact that they wont screen ladies younger than 25 as 'it will do more harm than good'!!!! really??? ask the ladies that are suffering or at worst that are terminal if they agree!!!   sorry rant over it just makes my blood boil!!!!!!

 

Anyway, ive done my 6 sessions taxol/carbo in 6 weeks, every friday which has gone swimmingly, after the 2nd session the pain stopped and after the 3rd the bleeding stopped, which made hubby happy as u can imagine lol. It was after the 4th session the hair started falling out but mainly at the front so now i wear a head band to avoid weird stares. The facial hair has stayed put so thats a bonus and yes still shaving legs even though not as frequent!!! Other than that all has been pretty normal, sit in a chair for 2 and a half hours with a drip while kiddy and daddy go to the park, chat to the neighbouring chemo patients... they have some fascinating stories and read a book, then back home and get dinner on the go etc. Felt a bit queezy after the 2nd session but after that didnt bother with the anti-sick pills either, just the steroids.

Having a week off this week so making the most of it as as from monday it will be the daily visit for the next 6 sessions cisplatin and radio so hope all goes as well as it has for some ladies on here too but cant quibble, happy to be fully functional and enjoying life without the pain now so bring it on...

 

Will update again, hope the good stories give hope, still thinking about those not so fortunate, kind of feel a git for being so bubbly about it all, i know its tough on some but i think we all need to hear the positives too ...

xxx

HI maz,

 you have the right attitude too. that all we can do theres no point worrying more about it as that wont cure anything and a positive mental attitude is by far a bit part!! carry on as normal as you can, if anything i try and forget the whole shebang, the only remonder is when looking in the mirror but then get back to life as normal as possible. How is it all going?? when do u start the radio?? I have my tats already. are you getting a scan between chemo and radio? im not and find it wierd that they go ahead with radio without knowing if the chemo haas done anything and if so how much!! would think that they would keep more of an eye on it all but guess that costs so cant argue as im on NHS and SO appreciative, i could never afford this with my wages! Im cringing a bit at the thought of having to use dilators!! I dont get 5 mins alone let alone to ... well you get my drift, will have to start having longer baths lol. I hope its going well for you still, always reassuring to hear that we're not alone in this ordeal... pls write back if u can...

best wishes xxx

started radio and next sessions of chemo 'cysplatin' which takes a WHOLE BLIMMING DAY!!!! arrgghh lol... other than the sitting around for the chemo all good still, radio is a bit embarrasing having everyone staring and writing on your lady bits but takes all of ten minutes and youre back out, any ladies on here had radio and if so how many treatments before noticing the effects like the sore skin, bladder and bowl probs??? just to be prepared... am rubbing creams in daily before the soreness starts which might help ...

 

 

thanks guys ... keep smiling xxx

Hi Kitty

I know what you mean about the Cisplatin treatment - it is such a long day ..... I was lucky, my hubby came with me and even if we both sat there reading it was nice to have the support....

I had 28 external beam radio treatments in Jan / Feb.   I was lucky I didnt suffer too badly compared to others.  

Skin - by the end of the 28 treatments this could be sensitive and slightly warm to touch but not broken skin.   I used E45 cream at least 3 times a day and would allow the cream to soak in rather than rub the skin.   Also I changed my shower gel to the Simple brand - softer on the skin.....

Bladder - by the end of the 28 treatments I noticed that the bladder wasnt holding as much as before and since my treatment has finished this has improved.  I also got an infection after my brachy treatment, but this was easily sorted with anitbiotics.   I didnt suffer with the radio cystitis although occasionally I would feel a slight sting / warmth

Bowels - this for me was the worst - within 2 weeks I started to have have diahorrea, however this wasnt everyday and started 2 days after Chemo (cisplatin).  As the treatment went on the diahorrea increased as did the number of tablets I took !!  These helped but didnt stop it completely.   By the end of the treatment my bowels were really painful (made me cry) but I spoke to the oncologist about it and she gave me a cream / gel and it cleared up (this was the same time as the UTI).   I have always had 'sensitive bowels' so considering the treatment I dont think this was too bad !!

Overall I can honestly say that I only felt ill for no more than 2 weeks and this was as the brachy finished and I had the infections - after about 10 days I started to feel better.  

I took the advice given by the ladies on here and listended to my body, so if I felt tired I rested, if I felt hungry I ate - and drank a huge amount of water ......  It does help

Hope this helps a bit, but if you have any questions let me know  - good luck

Tracey

hi tracey,

thank you for the pointers. Ive just done my second week of external radio and so far havent had any probs either. Apparently the side effects will start next week or so, I have another 3 weeks of external than the brachytherapy will be due which could be anything from 2 - 5 treatments. The consultant is advising me to eat less fibre to help with the lose bowels before that starts. Im relieved to hear you came through the radio without too many probs and Im just hoping all will go as smoothly this end. Did you also have Brachy?? Im having the low dose so will involve General Anaesthetic, gas and Air and morphonie pumps which sounds awful along with being admitted for 3 nights a week away from the family, boohoo but all looks positive otherwise. Have you finished your treatment now?? Hope all is holding up well for you and your family xx

I had external radiation in December 2014. Had been poked and proded so much, it wasn't embarrassing to me by by that point. Just the fact that I was still bleeding was embarrassing, but the team was so sweet and helpful.

I had extreme internal pain as side effects, so discuss possibility with your health care team.

Then last session seemed to destroy the very last of the good bacteria in my bowels. So, I strongly suggest maintaining intestinal flora with very good probiotics. Both before during and after treatments.

Hugs and Good Thoughts For You,

Katie

aww katie, sounds like youve had a pants time with it... what are their plans when you get back onto your treatment?? For me the taxol/carbo seemed to do the most reducing on my tumor which was 4cm and had started spreading to my lymph nodes in the bottom of my stomach but now its down to 1.5cm. i was hoping it would be smaller by now it still seems quite a way to go, just wondering if they will consider a hysterechtomy once its smaller? hope you have a positive plan ahead of you.

 

Regards, kimi x

Because mine has mets to various places and I was in such bad shape when I got 2nd diagnoses, they watch me closely and make changes as we needed. Taxol/Carboplatin definitely was working. Had to take a break due to low blood counts. I would have been returned to same chemo in August. Now I am in limbo while the doctors decide how to best handle the only setback I have had - as verified by ultrasound I had 2 days ago. I will post when I know something.