Well, my mri results show its still in the cervix, v close to the para-something or others and a coupla my lymph nodes are enlarged so they have graded it as stage 2. Bleurgh!!!
Soooooo, definitely no hysterectomy for me cos its in an awkward place.
Im waiting for them to contact me about a PET scan and then i will meet the team from Leeds that will be working on me/with me. I’ve to have a CT scan & a load more tests, one of which i will need a gen aneasthetic for. Anyone know what that one will be?
They believe i will be having chemo 1xweekly and radiotherapy both external & internal over 5 to 7 wks.
The treatment plan will b more tailored after all these tests come back.
Expecting to start treatment mid May.
Feeling surprisingly calm with blips of utter fear but mostly calm.
Anyone else on this sort of journey? Anyone out the other side yet?
Beginning to think about what in earth and what to tell my 8yr old lil man. The macmillan booklet has given me some good ideas i think. Still dreading it. I know his lil mind and im nervous he’s going to think the worse as a little girl in his class unfortunately lost her mummy to it last year.
How are you guys getting on? Hope u r having good days xxxx
Welcome to the stage 2 club! :-) So here are the positives; No surgery (yipee!) No scars and all your bits remain exactly where they are. That is cause for celebration believe me :-) As many others here will attest, the chemo-radiation therapy turns out in reality to be nothing like as daunting as it appears before you begin. You'll have to trust me on this but when your daily visits to hospital come to an end, which will be sooner than you imagine, you will actually miss it. Sounds mad I know. You will keep your hair but may very well develop a case of thr trots, so not much worse than a dodgy paella on a Spanish holiday :-)
I also was recently diagnosed stage 2B. I am not sure if treatment is different in Australia, but I have to have a hysterectomy and chemo. I think I just qualify for the hysterectomy because the tumour is just under 4cm (3.7cm) and because there is no lymph involvement. The doctors have told me that if the lymphs become infected, I will then need some radiation. My story is a bit complex because I am pregnant and continuing with the pregnancy.
I am also on the journey and literally just started my treatment (1st chemo) yesterday. Feeling very tired. I have been told that I will lose my hair in the next couple of weeks, but I am maybe on a different chemo cocktail because of the baby.
Also, I just had a Petscan and I think it is quite precise for showing all the cancer in your body. The other test under anaesthetic may be what I had which is called an EUA - examination under anaesthetic. It's where they just do a big exam of the cervix and the tumour. Maybe you are having something different though?
Also, I had one enlarged lymph node from the MRI scan and when I had the Petscan it showed no cancer in that lymph node - the doctors said that sometimes they can just be enlarged from a previous infection or something but it does not necessarily always mean cancer. But if the lymphs does have cancer, from all I have read the radiation is extremely effective.
I hope you are ok, it's great you are having moments of calm. I have just started to have a few calm moments but still mainly in fear which I really hope to get out of soon.
I also look for ladies who have been through this because it is so reassuring to see them on the other side.
I don't have many words for what to say to your son - I have no idea what I would do in that situation with a little one because I don't have any children yet, just the baby inside me. But I am sure you are a great mum and you will know what to say.
That is so sad about the mum of his classmate who died, I hope it is ok to ask but do you mind me asking what stage she was? Was it a reoccurence?
Hey Rosie, i'm really not sure about his friends mum. I didnt know the family too well so i didnt like to ask but i think it started as breast cancer.
'The fear' is a bugger isnt it hun.
Thanks for all the info about all the different tests. Im reeeeeally hoping the enlarged lymphs are from infection as i did get an infection after the lletz i had.
I had a councilling session at a local cancer centre yesterday and as i was leaving the manager pulled me to one side and said she couldnt believe she forgot to tell me when i went to enrol yesterday, but one of the guest speakers who leads the women's health support group has a very similar story to mine and she has been clear ten years now so that gives me huuuuuuge hope :) i hope it does u too my lovely. I think u r being very brave, even if it might not feel like it.
How long is your chemo treatment for? Do you know yet?
Thank you for welcoming me to the club haha. Loving your sense of humour.
I have a date for the Petscan already! Wow. Its the 3rd May. It made me giggle cos the man who was arranging it with me said the few days running up to the scan must be stress free do my blood pressure doesnt raise. How funny.
Thank you for welcoming me to the club haha. Loving your sense of humour.
I have a date for the Petscan already! Wow. Its the 3rd May. It made me giggle cos the man who was arranging it with me said the few days running up to the scan must be stress free do my blood pressure doesnt raise. How funny.
There are quite a few ladies who have recently finished treatment and a few of us have written about it on here. I did a daily blog back in January and put absolutely everything on it - you might find it of interest. Kumagill and Lozzleypez have also logged their journeys. You will probablyfind the stories a comfort as you will see how manageable the treatment can be.
I also have an 8 year old son and rightly or wrongly I decidedagainst telling him the full truth. I told him that I had to have the thing that was making me bleed burnt away but it would make me feel poorly before I got better. This kept both him and my 15 year old happy. I just didn't want them worrying if they didn't have to.
Keep us all informed as to how you are getting on. X x x
Thank u Phlleepa. I will try find them. (Im still finding my way round on here haha. Bit of a technophobe).
Im sure they will be invaluable to me. Thanks.
Yes, i wondered about leaving the c word out of it but telling him i'm poorly and need some special medicine that might make me feel poorlier but will help to make me better. I wondered about saying (if he asks about what is making me poorly) it is a lump making me poorly. Not lying, just not whole truth.
Thats exactly it. I dont want him to worry unnecessarily
i got my diagnoses mid March and i'm just through week three of treatment , I'm in the interlace trial so having 12 weeks of treatment not the standard 6.
i have an 11, 9 and 10 month old all boys to start with I told them the dr's knew what was wrong and ninjas a lump in my body that they needed to remove and that I would be going to the hospital to have special medicine to shrink and remove it. I told them it might make me a bit poorly and tired but it was making me better in the long run. After i cut my hair short they asked why and I explained that I was probably going to loose my hair because of the medicine (interlace chemo is diff from standard and causes hair loss) and just this week I have explained to them that's the lump I have is a cancerous lump, I just decided I didn't want them hearing anything being said in the playground etc. They took it really well. I showed them a picture because they were asking where it was, they can see I am doing well on the treatment so far limited side effects and their grandad had stomach cancer a few years back and has the all clear so they know cancer doesn't always mean doom and gloom.
i think being positive and the fact that I'm actually feeling a lot better than I did six weeks ago gives a strong message to my boys that i'm doing ok and we will get through this.
welcome to the gang!! I am also 2b and have just finished treatment on the 11th April and i went back to work on the 18th April and I already feel back to normal.
The treatment is very do able. I felt tired and a little sick but if you take your anti sickness tablets they will take care of that!
If you have any questions feel free to drop me a message! Plenty of us on here have all just finished treatment at the same time xx
Thanks for talking. I have lots of appointments coming through now so it's all getting very real. I have a kidney test on wed and an apt at oncologyon thurs (not sure what that one is for). I have my PET scan next Tues.
How'd u find the treatment? Have u finished now? I'm.hoping everything went well for u.
yes I finished treatment last August & only last week had the news that my latest biopsies are clear (phew!!!!!).
in terms of what you've got ahead in the coming weeks - your kidney test - a long day broken up into 2hour blocks, your injected with some radioactive material at your first slot and then have blood tests at 2 2 hour intervals to see how your kidneys process this material. This information feeds back to your team to plan your chemo. There's not much to do around a hospital for that length of time, we visited the Thackeray museum next door to the hospital. It's actually a medical museum, but great interactive display on ground floor of old Leeds and a lovely coffee shop - you can easily pass an hour or two !
PET scan is fine - just lots of lying around. You're not allowed to eat before just drink lots of water to hydrate your body. You go and again they inject a radioactive material with glucose and you're left to relax for an hour (this is to give the material chance to travel round your body). You'll then have the scan. The team are lovely - when I first went I was anxious so the guy took me into the scan room beforehand and showed me the machine and explained how it would work. It's not noisy so you can lie there and drift off to a nice place!!!!!!
once the team have the results of these tests they will plan your specific treatment. You'll then be called back to have your radiotherapy planning session where you'll be scanned (again!!) after drinking some contrast liquid. They'll also place some tiny dot tatoos on your pelvic area so once treatment starts they can position you correctly. Again the radiotherapy team are fantatstic - don't be afraid to ask them anything! It was at this point I received the schedule of appointments for my five weeks of treatment. My chemo was Wednesday (which seemed to be the same days for others going through the same as me).
As many others have said on here - it sounds daunting- BUT it is very doable.
When you have chemo - look out for the Macmillan volunteers that come round. I had a lovely foot massage on two occasions!!
i hope this helps for your next few days - as before any questions please ask - if can help ease the anxiousness I'd be happy to help!
Thank u so so much :) i cannot tell u how much it helps to hear from amazing women such as yourself.
I am soooooo pleased to hear & soooooo very happy for u thstcu r clear now xxx
One last question (maybe haha). Although i am pretty good at being positive on the outside & getting on with it. Is it normal to be constantly thinking about it and often thinking the worst? I go to sleep thinking about it, i wake up feeling sick thinking about it. I cant stop. It's like it has taken over everything.
I don't know whether it's normal but I'm right there with you! So much so that I wrote a fabulous, warm, supportive post which I some how nuked as I wasn't paying attention!
I don't see how it cannot be in your mind constantly at the moment. You've got a lot coming up and of course you're anxious. Plus your imagination is probably running riot with all the unknowns. Once you get started I'm sure you'll feel a lot better. I'm talking to myself here too!
I'm sure that the women posting on these forums with their humour and strength are women just like us. They've been through what we are faced with, they're coping and they're moving forwards .. We can do it too.
I am new to this! I need to find out how to do the signature thing with details of what's going on.
Totally holding your hand and wishing you all the best for the start of your treatment. I'm seeing my onc tomorrow for the first time so wish me luck. I'm in the US so I don't have a clue how they do things here.
Day has been total roller-coaster, which seems to be the new norm.
