Another day another blow , today I decided to call my cancer nurse just to get some cleared up and she mentioned due to the size of the tumour (7cm ) I will need chemo first to shrink it before starting the normal treatment.
I asked if that means I would loose my hair and they confirmed I would . Has anyone else had this 
.
I asked again regarding spread and there’s none except 2 lymph nodes. X
Edit to add I’m stage 3c1
@Mel2 massive hugs to start off with. This club really does suck!
Have to say I am a little taken back that your CSN said that because I’ve not heard of having chemo before starting the ‘normal’ treatment of chemorads
Have you had your appointment with your oncologist yet and signed your consent forms? That was when I was formally told what my personal plan would be.
Before that my CSN was telling all the potential plans of action that could happen….
As a 3C1 with 2 nodes involved I am shocked but maybe some other ladies have had a different treatment plan.
Hugs
Mena
Hi mel2 i was 3c1 just out of treatment a year in august gone.my tumour was also 7cm.i did not have chemo to shrink it before hand.i had standard treatment chemorads.
I’ve not had my appointment yet but she did tell the cancer nurse to pass on the news . In a panic I went to maggies ( the cancer support centre ) and gave the lady there permission to call up on my behalf to see if anything had changed and I hadn’t picked up on it etc but no that’s the way the oncologist plans on moving forward.
I feel like as soon as I get used to one thing and deal with it another pops up xx
I really don’t know why they are choosing to do it differently 
xx
I am not surprised and it’s so frustrating that you are being different things. It’s a challenging situation to be in without miscommunication!
I’d be asking your Oncologist why this treatment plan as opposed to chemorads first to at least understand her rationale.
I know my Oncologist said if at 6 months check up my cancer is still there one of my options would be a chemo mix where I’d loose my hair as one of the options.
Sending you hugs lovely
I had chemo before the chemo with radiation combination that they call the normal treatment. I had 3 cycles and it shrunk my tumour loads. I had this treatment as I had a small cell neuroendocrine tumour. This was 5 years ago. Treatment successful, still here and doing well.
Did you lose your hair with it ? I know it’s such a trivial question when there’s a growth attacking our body .
But my younger child has autism and health anxiety and if I can get away with it I don’t want to tell her .
I have my pet scan tomorrow and honestly I’ve never been so scared
Sending you a big hug for your PET scan tomorrow. This is all super scary and you’re allowed to feel that way. I get scared every time I have a scan too. It gets easier - promise. I was 3c and did not have chemo before chemorads. 5 cm tumor. I had cisplatin and did not lose my hair. I was worried about that too, but I was ready to lose it to kill the tumor if need be.
Hi @Mel2
I was diagnosed in Feb 22 with 7cm tumour and was told due to size of tumour I would just be given chemotherapy. But I was stage 4B.
During May/June 23 i was given 10 sessions of radiotherapy, which has added to the reduction of my tumour. However yesterday, due to some growth of lymph nodes I’m now being scheduled for another 10sessions of radiotherapy. My chemo has continued every 21days throught this time. Ive now had 25 sessions! They are talking about a chemo break during the radiotherapy this time, to alleviate the side effects.
Yes I lost my hair, within weeks and it has been a challenge for me as I dont feel like myself somedays (in the mirror) however I have some great wigs and some people have no idea at all that I lost my hair.
Earlier this year my hair did start to grow again, but not like before yet, due to ongoing treatment and I’ve been brave going without wigs too.
We all have different ways to deal with the trials and tribulations and I’m sure you’ll adjust yourself to cope… BUT accept the help and support you’ll need it!
Good luck with your journey xx
Hi…I don’t know if this is helpful…so before I started my treatment I was offered to join a research trial…this meaning that the computer could accept me for the standard treatment…or the standard treatment plus 6 extra rounds of chemo…I accepted the offer of the trial and the computer chose me for standard plus the extra 6 chemo before starting the standard treatment…and yes I lost my hair…I felt that I had to give it my all…chuck everything at this awful cancer…now over 18 months post treatment I have hair and I am in remission…had I not had the extra chemo would I have beaten the cancer to date?..the extra chemo is something for the stats to reveal in the near future to see if it makes a difference in outcome…I agree it’s daunting losing your hair…it’s part of your identity…it took me over 12 months to feel like me again…I had other issues to deal with after treatment…I really hope the outcome is good for you…be kind to yourself and give yourself time to heal…much love xx
Thanks for your reply 
, oh I totally get the hair thing , I felt like they just kept changing the plan and I couldn’t keep up. But as far as I’m concerned now they can have it ! I was drying my mega long hair today thinking this would be much easier if it wasn’t on my head !
I had my pet scan yesterday so now It’s just a waiting game to hope it hasn’t spread any further than the mri highlighted. Xx
Hiya,
Sorry you are going through this. I was diagnosed 3c1 in January of this year as it had gone to my lymph nodes. My oncologist suggested 6 rounds of carboplatin and paclitaxel before the chemorads to target one of my lymph nodes that was very enlarged so that’s what I did, followed by the standard treatment of chemo with radio and then brachytherapy. My hair thinned massively but it was actually at its worst when I’d finished all treatment in June. It’s coming back in now tho but I have lots of caps and hats. On a positive note I didn’t feel ill all through treatment so hopefully you will be the same.
Hi Mel, I was similar to Sue, I was offered a trial where I got 6 weeks chemo before standard radio/chemo/brachytherapy. It was a chemo drug where I knew I would lose my hair. For me it was a decision just like Sue said to batter this with everything I could. I was 2ab with a 4cm tumour sitting on my cervix and growing down into my vagina. After my 3rd trial chemo it had shrunk and by the time I was 3 weeks into the standard treatment my tumour had gone. I know it was the extra chemo offered that put me in remission and a year and a half later I’m still good. It’s scary for all of us, we can only do what we think is best for us. Hopefully there are more like me where the extra chemo has worked and the trial results will be good which in turn will help women in the future and maybe you would now be being offered this extra chemo as standard treatment if that makes sense. I do hope you get to where you want to be with this. Take care, Nicky
Hi Mkilbride
Just wanted to say hi - I’m currently on cycle 2 chemo for small cell neuroendocrine stage 3C1
Great to hear you’re doing so well 5 years on
I’ve got 6 cycles total of Carboplatin & Etoposide… so far so good. How did you find it?
X
This reply will probably be too late to put your mind at rest but other ladies might find it useful.
At the initial diagnosis, I was told I would have 5 weeks of chemo radiation, followed by 2 x 2 Brachytherapy treatments. But then I was surprised to be told that it was now recommended to have 6 x weekly doses of Paclitaxen and Carboplatin BEFORE the standard treatment. This wasn’t because of any change in my diagnosis (2B), but because they had recently seen the results of very convincing research to support this Induction Chemotherapy. I am not sure that it has even been accepted yet as official protocol in some places. I live in Scotland. My pharmacist daughter checked out this research for me and confirmed it is definitely the way to go. You should be able to find it online - google Induction Chemo Trial. My oncologist says it is a game-changer.
For me, there was no hesitation. You have to zap this with everything you can. I have just had infusion no 4. I have felt quite tired and yucky for much of the time but I am getting there. ( Other people have few problems coping with it.) And, yes, I have lost my hair now. But I have lots of bonnie beanies. Personally, I see it as a minor inconvenience.
Good luck, ladies!
Hi i have just finished this treatment 2 weeks ago. I hope everything goes to plan for you. If you have any questions im happy to answer them 
Hope your treatment went well with the best possible outcome. I would like to ask a couple of questions, please.
How well did you cope with the Cisplatin? And is the chemo radiation very wearing? Also, I do worry about coping with the pain of Brachytherapy if I am one of the unfortunate ladies who is affected in this way. Any advice or reassurance would be welcome! Thanks. And well done, you, for getting through it.
Hi cisplatin was fine for me had a few changes of anti sickness till i found the 1 that worked for me i was never sick with chemo just felt sickly sometimes but once i had the right anti sickness didnt even feel sickly. I found the radio tough mon/ tues were my worst days horrendous diahorea, hot flushes & fatigue. Brachytherapy was truthfully fine for me i had a epidural and asked the anesthetist to also knock me out in theatre which they did. I can remember being wheeled in then woken up so knew nothing going on. Back to the ward the nurses come & roll u through the night which was a relief as my bum was going numb. No pain just discomfort. No pain at all being hooked up to the brachytherapy machine for radio. Only discomfort is the removal of the brachytherapy equipment first time just pain relief from the button u have to give u pr when u need it. Second time was sore as id picked up a infection & cystitis but got some gas & air and was fine. Its no where near as bad as i was expecting. I wish u all the luck in the world if i can do it anyone can xx
