1st round of treatment- no change at all??!!

Hey ladies,
Diagnosed 25/11/2105 with 2b cc.

I really need some help to get my head around the news I received last week that my 1st initial cycle of 20 radiotherapy & 4 chemo have not made any difference to the size of my tumour so therefore the Bracytherapy was deemed no use to me and cancelled. I am halfway through a 2nd cycle of radio, 10 treaments & 2 more chemo. I finish on 12th Feb.

I am struggling to believe that the next 10 radio will come back with good news, I have been positive & focused through all my treatment so far but this has really knocked me sideways & emotions are running high. I believe it will shrink it but not fully give me the ‘all clear’ that I so wish for. If 20 can’t even make it shrink slightly how can 10 clear it? It’s in a more focused area so maybe there is a chance?
My consultant said after Friday I will be seen in clinic after 6wks but will not have any results for 3 months??!! I think my sanity will be tested to the limits & maybe my families too.

If this doesn’t work I cannot have more radio only chemo so I guess it would be a diffrerent sort from Cistaplin that I am currently having. I know we cannot be told it’s curable, their aim is to cure it but I stupidly thought that the initial treatment plan they gave me would miraculously ‘fix’ the problem, so all my positivity has gone & left me along with alot of my ability to hold my emotions in check, alot of tears this week

If anyone has been in a similar situation I would gratefully love to hear any advice or experience you could share with me.
Sorry for long post & thanks for reading.

Take care ladies & hope you are all coping best you can with your jouneys


So sorry to read this. I don't have similar experience though I can tell you that I had surgery for 2b, which is not the way it's treated in UK. As far as I understand it the radio and chemo therapies continue to work on your tumour after the treatment is over so try to remain positive that it will start to shrink soon.

Be lucky :-)

Hi Tivoli,

Thank you so much for your reply. I was actually given a hysterectomy in Oct 2015 before they diagnosed cc. I remember the Chemo nurses saying that it's 4wks cycle for the chemo in your system after last treatment but not 100% about Radiotherapy. 

I will have to ask Tues at my last review.

I wasn't sure that if the tumour does shrink in the weeks after my last tratment but it is still there, would I still need extra chemo to clear it altogehther as that is the outcome that they are aiming for, am I being a bit naive/dim here? 

I wil keep focused & remain posutive that this 2nd cycle will prove effective. 

Take care x

Hi designer flo.  

It must be so disheartening for you at the moment. Ive been told that it still works for a while after treatment ends too. We have likened the radiotherapy to what happens when you warm something up in the microwave.  You have to let it stand for a minute or so when it's stopped cooking because the waves from the microwave are still heating up the food for a minute or so, so you have to wait for it to stop before you eat it.

So hopefully the same sort of thing will be happening to our tumour. 

At my pre clerking last week the Dr said that over the next few weeks the chemo will be eating into my healthy bloods cells and my bone marrow which is why I am at risk of infection.  Made me feel great! But at least I know that even though that part of my treatment is finished,  it's still trying to kill this thing for me.

I sincerely hope that you get good news soon.

Please keep us informed x 

Hi Philleepa

Thanks for the advice,  the microwave description has made more sense to me thank you, good description. I will ask at my review Tues a round about time scale. I feel I always need certain specific details to be able to get my head around what will actually be happeneing. Any flicker of hope that it will work will be grabbed. 

So if your chemo starts to attack your healthly bloos cells etc you are going to be feeling worse effects & lousy even though that part is over? Positive thinking that it is still working as you say goes along way in keeping spirits up. I said to my hubby yesterday that it's the treatment that makes you feel ill....the pain of cancer was debilitating for me for months before diagnosis (6mth ish) and during the first 3wks at least until they managed to control it, but the sickness off chemo and horrendous side effects on my bladder & bowel from Radio have just floored me. Lack of sleep also does not help so going to GP for something...hopefully.

I hope you mange to get through the next few days without too much pain or discomfort. Both you and Tivoli are brilliant helping with advice while still both going through the mill. I really aprreciate it and will keep you informed of progress. 

Many thanks xx

Oh I'm not going through the mill! I finished all my treatment four years ago! :-)

Oh didn't realise, even better then that it's done & over with for you : )

Indeed so, I just come back here every day to cheer everyone else along :-)

The treatment stats in your system fir 6 months and is still working at this point. It's very disheartening that the rumour is being stubborn but you will get there.....I have advanced cancer and mine has shrunk so yours will too. It may just mean that you have a higher dose of chemo like I did, I lost my hair and was so poorly but if you look at me now you wouldn't guess what I went through.

chin up and keep thinking positive and try not to give up hope because if you do it means it wins and we don't allow that xxx

Hi carmel121

Thanks for replying. It's good to hear from someone that it has been working for them. I think it's just the 3 month wait that is playing on my mind & the knowledge that I cannot make any choices to sway the diagnosis to being a positive outcome, everything is out of my control : \ 

I asked my consultant today at my last review as many questions as I could (without being a pain) & I know she can't see into the future or predict the diagnosis, but I found it difficult to feel positive coming away from the review. 

I know the next step as you said would be a higher dose of chemo if it is found that in the 3 months the tumour has shrunk but not gone & she confirmed that today & said I would lose my hair, (mine has thinned with Cistaplin) so I can get my head around that part now as it has been aired. 

I will keep your words in my head & know that it can work, I have as good as chance as anyone that it will work & I will stay positive. I will NOT be beaten by this disease or allow myself to be lost to it!! 

Take care & thanks for your support 



Hi designeeflo. 

How you feeling now you have finished your treatment?  I've been thinking a lot about you.  

X x 

Hi Philleepa, 

Thanks for your thoughts & concern. I must admit I felt quite teary on Friday saying goodbye & thanks to the team at Rosemere, I also felt quite frightened that the daily support network has suddenly just disappeared, don't get me wrong I am so glad to not have to travel everyday but it made me feel abandoned in a way. 

I am still struggling to sleep, trying Kalms and resting during the day when I am tired, sometimes I can't keep my eyes open so impossible to fight it so I don't think that helps at night. 

Thoughts are flying through my head that I will have to have more Chemo when I go back in 3 months. That has fear has stemmed from the initial 20 radio & 4 chemo not working so I cannot for the life of me believe that 10 focused Radio & 2 more chemo will clear the tumour, shrink it but not erradicate it.....I am so trying to keep my head level but there's an inner fear. I am gutted that my Bracytherapy was cancelled as I read on here that it sems to be not as bad as people think it was going to be and seem to be getting good results.


How are you? I am so glad I decided to share my journey on here as the support has been phenomenal and for you to take time out of your day when you are also not well to be concerned about me speaks tenfold about who you are as a person so I really appreciate it & it makes me stronger to know we are all sharing a similar path. 

Take care 



Hi designerflo i have been thinking about you and wishing you the very best. You do know you can still stay in contact with your team for advice and any questions you may have? I really hope you get good news when you go back in 3 months time i will be keeping everything crossed for you eyes an all. Thank you for sharing your journey with us its really helpful for those off us who havent started treatment yet. I start my treatment in 2 weeks time at long last. I will have a Picc fitted did you have one it stays in until after my treatment has finished? I know it will be difficult for you not to worry for the next 3 months i hope you get some peace of mind. Stay strong we are all here for you lots of love xxx

It's weird cos you do feel a bit lost once treatment finishes. I'm hoping your side effects will start to lessen this week and you will start to feel a bit more positive.  It's so hard though isn't it. I think we have to just put our faith in the Dr's and trust they know what they are doing. I expect if they didn't think your booster sessions would do th

e trick,  you would've started on the stronger chemo asap? Obviously I don't know but they want to cure uou do will do their utmost to do so. 

The support IS wonderful on here. I think that it helps us all knowing what other people are going through, it makes us feel not alone and to be able to discuss things with other people going through the same is great.  Other people don't understand.  I have a friend who keeps asking me to ho out with her. In the end I had to tell her that I can't because I'm having problems with my bowels. I've not wanted to discuss my issues with real life friends and family because I don't really want people to know what I've gone through. They don't need to know the ins and outs of my body.  Anyway she texted me the other day with 'how's your poo poos'. Probably all very harmless  (we are childminders so it's how we talk to the kid) but I got a bit upset,  it felt like she was making light of it/taking the mick a bit. I'm sure she didn't mean to but if you've not been through it, it's hard to understand.  I'm probably making too much of it but ....... I think one of the reasons o haven't told people is that I don't want these sort of comments or advice. I have another friend who is asking me out on nights out, camping weekends etc. Whilst she means we'll I have already told her I can't plan anything until June when I have my results and know if I need more treatment.  Money is also an issue so £20 on a theatre trip is a bit much at the moment. She just wants me to have things to look forward to I know but I only have one thing keeping me going and that's the end result. Fun can happen after June.  

Gosh I'm going on with myself again.  

We're all here for support and to support one another x x 

2 weeks till treatment  kumagill. At last you have a date!  29th February?  So pleased for you.  I bet you are relieved.  How long is your treatment?  

I didn't have a pic line. I think it saves a lot of time with taking bloods etc doesn't it. I wasn't offered one. 

Keep us informed x 

Your reply made me smile......its nice to see and hear that fight. It's just being stubborn but the good news is that cc is very slow growing so if it is being a pain still at least it won't of spread.

I was told I would loose my hair and I thought I was fine with it which I was when it 1st started but when I went to brush it it was coming out in huge lumps so out of anger and frustration I sat crying and swearing because I wanted to do was to brush it and tie it up.

My advice once it starts cut it really short as it will be a lot easier to deal with when it's shedding as it takes a while. I found chemo hats really comfy and kept my head warm....you'll lose all body hair too I did and it was nice not having to shave my legs and under arms for 10 months lol! It now grows really thin and slowly....The hair on my head grows quickly...its at that annoying stage atm as I'm growing it long again.

I hope you get good news and please try not to think about it too much as it will make you poorly. Just keep thinking that you will beat this it does help xx