Changed staging after PET scan

Hi NicNak 

I remember the delays you had in getting to diagnosis and am sorry to read that you now have had it confirmed that the staging is higher than originally thought. It’s such a body blow for you, especially when surgery is no longer an option.

I haven’t had exactly the same experience as my original diagnosis was stage 2b, so there was no lymphnode involvement, but I’ll tag in Snobird as she was stage 3 and successfully completed treatment last year. Many of us have, however been through the chemoradiation treatment which you will be facing, which is fairly standard at both stages 2 and 3. Usually it means having around 5 weeks of radiotherapy (weekdays only) with weekly sessions of chemotherapy, and brachytherapy (internal radiation). We can offer a lot of support with this in the group. 

I can understand everything being a bit of a blur for you yesterday-I froze too when I got my first diagnosis, and it was difficult to absorb the information. Do you have someone who can come with you to appointments? It’s really helpful to have another pair of ears, and someone else will often pick up on things you may miss when you are being bombarded with information.

I hope you don’t have too long to wait for the next referral, as it’s so stressful waiting for treatment to start, but once you get your plan you can focus on getting through. Waiting a few weeks is unlikely to have any material difference on your outcome. Just take a day at a time, an hour at a time if you need to as you’ve had a huge shock and it’s a lot to process. 

Please stick with us and keep posting so we can do our best to support you through. We will try to help you not to feel so alone.

Sarah xx

I’ll also tag in Lulabell as she had a change of staging to 3c after a hysterectomy when her cancer was initially assumed to be an earlier stage. 

Sarah xx

Hi NicNak,

I'm Lulabell. Sarah tagged me as I also have lymph node involvement and so my cancer was restaged to 3C.

At first this makes it feel a whole lot more serious, but, as Sarah said, once they give you a clear plan of treatment and starting dates you can focus on that rather than the stage number. Lymph node involvement means that some cancer cells have detached from the original tumour and moved into the lymphatic system. Mine was in my illiac lymph node which is in my groin.

Basically the radiotherapy will pinpoint the area of concern and then somehow the chemotherapy will interact with the radio to stop the cells multiplying further. The word "chemotherapy" and all its connotations is far scarier than the reality, the best thing to do is to take it one day at a time and try not to overthink too much about anything. Personally, this is really hard for me, as I tend to overthink and worry excessively. I also found my Google searches in the early days terrifying and I've stopped doing that now. 

The chemoradiotherapy is very doable and absolutely the best way to fight the cancer cells. I finished it a month ago and I'm absolutely fine now. I also kept my hair, as Cisplatin (the chemo drug commonly used in this treatment) didn't cause it to fall out.

I hope this helps, please get in touch if you'd like to chat or ask me/us anything.

Big hug, you're not alone,

Lulabell

Thanks for helping out Lulabell I hope your post has helped to reassure NicNak and I’m glad to hear you are doing well after finishing your treatment. I’m in complete agreement about dr Google! 

Sarah xx

Hey NicNak.  I am a Stage 3C1 lady and I completed treatment in March of last year.  I had lymph node involvement but please don't panic - easier said than done I know.  The treatment is very successful and very do-able.  You have been through the worst in terms of uncertainty, anxiety and waiting and at least you now know what you are dealing with.  Once you get a treatment plan you will feel much calmer.  Your treatment will probably be the standard five weeks of radiotherapy with one dose of chemo each of those weeks.  You may then go on to have brachytherapy - maybe three or four sessions.  I also have a big needle phobia but somehow it is all ok when you are going through it.  I think it's not a case of your situation being more urgent now but they do need to have a full picture of what they are dealing with so that they can give you the correct treatment.  Believe me, the staff and medical team are wonderful and will help in any way they can.  Your next appointment or one of your next appointments will be the planning scan in which they will give you some "tattoo markers" so that they know exactly where to focus the radiation treatment.  Completely painless!  After that you will get your trreatment plan.  In the meantime, do everything you can to help your body as it is one thing you can control.  Exercise and eat healthy and drink plenty of water.  Please ask if there's anything else you would like to know. xxx

Hi ladies

 SarahH21 Lulabell  Snobird 

Thank you so much for the info and reassurance, this has given me a little glimmer of hope x

i decided to go back to work after having a few very dark weeks over Christmas, i am so glad i  did as this has helped with anxiety and kept my brain from over thinking. I even did a full day yesterday and I didn’t think negatively all day! 
i am also feeling a bit more like myself and not either going crazy or a patient.

i read your replies to my husband last night and we both shed a tear of relief as we now don't feel like we are the only ones to be going through this and that there is life after treatment. 

im sure over the next few weeks i will be on here for either support or with questions, i just need to keep busy and have an active brain to keep the little devil in my head at bay.

i thank you so much for the kind supportive words and for giving me the light at the end of the tunnel xxx

Hi NicNak 

I’m so glad you are feeling a bit more reassured by the replies you’ve had, and are able to focus on that light at the end of the tunnel. 

The good thing about coming to a group like this is that you are hearing lived experiences, and while family and friends can be a wonderful support, they don’t necessarily know exactly what it’s like to go through this. Don’t focus on a stage number would be my advice-you are an individual and not a number. The focus needs to be the treatment and powering through that.

Definitely stick with us, and we will be here with support and encouragement as you go through treatment.

Sarah xx

Hello, i was restaged after PET scan to 3c2/4a?, have had EUA for carrect stage involved bladder or no, lucky it was not, para aortic and illiac limp nodes involved , staged 3c2 . I had 4 sessions of carbo/taxol chemotherapy every 3 weeks ( lost my hair, lashes, eyebrows), today had my last radiotherapy in total 25, and weekly cisplatin 4/5 , last one was canceled because my platelet drop down .Monday will have my brachytherapy all in one, have stay at hospital for 3 days. 

Hiya Grata

i am so sorry to hear that you are going through this too. 

Could i ask how long you had to wait for the treatment to start after the re staging? 

I hope you are well and coping with the treatment xx

in 3 weeks start treatment