Hi. Sorry, I’ve posted this on another thread that I’d started, but I’m not sure it’ll flag up and I’m panicking horrendously and feeling sick. I was 1b1, lesion less than 4cm and contained in the cervix - adenocarcenoma type. Then the PET scan showed one hot lymph, still in the pelvic area. After posting and getting some advice form you lovely ladies and having spoken to my consultant, who said chemorads are as effective as surgery and once treated it shouldn’t come back, caught early, 1b, etc. all encouraging, I saw the oncologist for a talk about the chemorads today. He is lovely, but said I’m now stage 3, because of the lymph node spread. He said he was sorry, and that although treatment is likely to work he can’t guarantee it - I know that, obviously, but no one wants to be told I guess. He seems to think the chemorads will return my cervix to normal, but is clearly really spooked by the lymph node. He said my consultant was clearly shocked to see it at MDT. Obviously I know, though shouldn’t have looked, that stage 3 does not have such a good prognosis as stage 1, but I’m really floored after the meeting with him today as I’d been feeling so positive after the conversation with the consultant. I’m beginning to feel like every time I talk myself round and feel positive, I get kicked back down. I’m really confused by the stage change, Jo’s say lymph node involvement doesn’t change the stage but he showed my the Fido scale and it does alter the staging. I’m so tired of this roller coaster, and struggling to hold it together this evening. My treatment will be 28 rads, 5 chemo (cisplatin) and 3 brachytherapy. It didn’t help that, although the oncologist said the treatment shouldn’t be too hard on me, the nurse taking my height and weight said because I’m slight I’m likely to find it hard. Honestly, it’s like good cop, bad cop all the time.
Anne x
What a roller coaster it is!!
I had lymph node involvement as well. As they were little up all the way into my abdomen I was classified stage 4. After only 3 rounds of my initial chemo my lymph nodes were all clear!
After that I did chemorads as well. I have learned not to look at statistics or "probable" prognosis because it's so different for everyone.
Although it can be a roller coaster all the way through I hope you find some peace and can stay positive! I had very few side effects throughout all treatment and I'm quite 'slight' as well.
Sending you positive thoughts!!!
Hmm I was staged at 1b2 before my scans. I also asked my oncologist if my staging would change and he said no, because staging is just clinical anyway. I asked him what if scans show a hot node and he explained that I would be a 1b2 with node involvement. I'm an adenocarcinoma girl too. Nearly 7cm tumor. I have a large tumor, but no spread luckily. I'm sorry you're so confused and that negative news has been thrown your way. If you have no spread and one hot node, I think you're going to be just fine after your treatments. Keep your chin up.
And if it helps you feel better, they're telling you that youre a more advanced stage than me, yet I'm having to have more treatments. I'm getting 25 or 28 rads, 6 cistplatins, and 5 brachys.
Hi.
If it helps I was staged at 4a with lymph involvement and I got the all clear. I'm only 6 months post treatment but I'm completely ignoring the statistics, after all, not only are they 5 years out of date (and treatment has moved forward ) but they cannot predict your actual outlook.
I had 20 radiotherapy, 4 cisplatin and 2 braccy treatments (18 hours a time)
Sending you hugs because I can imagine just how you are feeling x
how strange he would say you were a stage 3!!...I was a 1b2 and after a hystertomy they found microscopic cells in one lymth node...but I was still a 1b2...!! I can't see how you can be a stage 3?! A lot of girls have lymth node involement and are successfully treated!! Don't look at statistics as they are misleading... And plus how you respond is completely different to others...I had a few niggles through chemorad but nothing I couldn't deal with...I'm smaller too and so far so good with any lasting effects!! Chin up and lots of strength sent your way!! Xx
Hi hon
first off, there are two ways that staging are done. Both systems are very similar but either way it does not make much difference. If you take into account your tumour size and type of cancer and how many lymph nodes are involved and what nodes exactly, it won't make much of a difference in treatment. So many people get so caught up in the stage when it's the smaller details that should matter. Like your overall health, support, age, these things will alter any prognosis at any stage.
You need to just take a breath!!! Know that the external radiation will zap the lymph nodes and any microscopic cells within the field the external is covering. The chemo will help eliminate any floating cells in your body and also aid the radiotherapy. The internal rad directly zaps the primary tumour.
Stop reading things that are out dated, or statistics that are so general you might as well compare yourself to a frog. Stick with the details. Small tumour, found only 1 node involvement. Better this was found before they did Surgury as this is best route.
you will do your treatment and kill this cancer and go on to enjoy your life. Why be upset over a stupid staging number. It doesn't matter if you are stage 1 or 4. You have to fight and have hope.
Hi Anne,
So sorry you are having to go through all this worry before you start treatment. I'm sure the nurses and medical staff mean well, but sometimes it's just the way that they put things can be really unhelpful. My stage and tumour size was the same as yours 1b1 and it has remained the same even though I had 5 lymph nodes involved. They just add an N1 on the end to indicate involvement. But as others have said, the staging is for clinical reasons to decide on the treatment plan, so please don't get hung up on it. As for the being slight and chemo effects, I too am slight, they gave me too much at each session thinking my weight was 25 kg heavier than I am, and I survived that, so the body can tolerate a lot!! I am now 2 years post diagnosis and doing well. This treatment is powerful, so have faith that it will knock it off its perch for good. All the vet best for your treatment Anne x
Hi Anne
I am sorry that you are having a difficult time at the moment. To be honest, as others have said, I find it confusing that your consultant said you are a stage 3 because of node involvement. The stage doesn't change with node involvement, I am a stage 2B with node involvement, and the discovery of my node didn't change my stage. Just was added on as Rachel said.
What Lolli says is right - chemorads will zap the node and any microscopic cells!
Also, the best news is is that you have not had a hysterectomy, to then find out you need chemorads. You skip the surgery and go straight to the chemorads, which is great. Some girls unfortunately have to undergo both, and the side effects and recovery are longer.
You will get through this!
Stay strong, you will be great.
Big hugs.
Rosie xx
Hi Anne :-)
I'm desperately sorry to hear about your nasty shock but as others have said, this is a really curable cancer from pretty much any stage it seems. Lolli has raised the issue of the two parallel staging systems. There is the TNM system which is used for all types of cancer where the T is the stage as determined by the size of the tumour, N stands for nodes and they can only be 0 for negative or 1 for positive and M stands for metastasis and again, can be only 0 or 1.
The other staging system is called FIGO which stands for Federation Internationale of Gynaecologists and Obstetricians and this is the staging system described in information pages on this site.
To the best of my understanding chemoradiation therapy is just as likely to work for your lymph node as it is for your tumour and in my opinion is the Rolls Royce of treatments. I am a huge fan!
Be lucky :-)
Tivoli
Thanks everyone. I think it's a combination of having to actually attend the cancer centre, as opposed to the General gynea bit where I've been up to now, plus the reality of treatment starting - minor things n the scheme of it all, but I have to go out of county to a different hospital for the brachytherapy and the chemo is done somewhere different to the rads. Minor quibbles, but it doesn't take much theses days for me to get stressed. I shall indeed ignore the FIGO staging and focus on them positives. Still shaky and tearful today, but getting my head together. Planning scanning tomorrow.
Anne x
Thanks everyone. I think it's a combination of having to actually attend the cancer centre, as opposed to the General gynea bit where I've been up to now, plus the reality of treatment starting - minor things n the scheme of it all, but I have to go out of county to a different hospital for the brachytherapy and the chemo is done somewhere different to the rads. Minor quibbles, but it doesn't take much theses days for me to get stressed. I shall indeed ignore the FIGO staging and focus on them positives. Still shaky and tearful today, but getting my head together. Planning scanning tomorrow.
Anne x
Hi Anne
i hope you are having an easier day today. How did your planning go. I wear my three little dots with pride although in the beginning I was freaked out by them but rest assured you will soon be wearing them with just as much pride as me!!!
Hi Lolli. The scanning went ok and I have my tattoos and they now have a molded beanbag thing with an imprint of me in it for every rad session. The staff were all lovely and supportive. I should be starting on the 26th, with the first chemo on the 30th. I hope you are feeling well and enjoying having some free time without chemorads.
Anne x
Hi hon
no worries. Everything is going to be ok. You will get through treatment and be able to take a deep breath. Our lives might never be the same but we can make it even better. Try to take this time to open your eyes to a world you ever knew much about, the kindness people have for strangers. Notice things that before you never did. Like a small smile from a stranger or the way the sunrise looks. Have a new perspective and an awaking will happen. Treatment takes you to places you never knew existed if you can look past the hard parts and embrace what you can get from it. I was never before a person who was so receptive to such things but this journey for me has opened my eyes and I don't feel so pissed off anymore that this has happened to me. Good luck anne I wish you all the best in the next few weeks!!!
xxx
Hi! I'm sorry your going through this. I to at first wax 1b1 due to size of tumor, unfortunately 1 lymph node was positive. And like many other ladies was still staged the same. I wasn't put to 2 or 3 as that's due to the size of tumor. I've just finished my treatment yesterday. 5 chemo 25 rads and 4 brachytherapy. It's not great but it definitely doable. Wish you all the best x
Hi,
Been recently diagnosed with 1b, squamous.
Have done hysterectomy.
Now found one positive lymph node post surgery.
What is the treatment options available and disease free survival?
Xoxo
I think they will most likely offer you chemoradiation next. Did they not discuss this with you when they told you about the.lymph node? I am sure they will discuss disease free survival with you if you ask. I had 5 nodes found after hysterectomy in 1997 and was given a 30 per cent chance then but that was 20 years ago.
Karen
Thank you so much Karen :*
Had consultation yesterday... will start my chemorad from next Sunday.
Hope to start my normal life soon
Your reply gave me a positive vibe xoxo
