Waiting times for treatment

Hi, I really need to let off some steam.
I have been following these forums for a few months now, since I was diagnosed in Feb, but this is my first time writing anything. I am getting seriously worried about all this waiting around on scans appointments and results that my cancer might be growing faster than they think. I was diagnosed on the 23rd Feb with 1b1. They told me that I wouldbhaveva radical hysterectomy within a few weeks. Appointment after appointment I finally got a RH date for the 14th April, over 6weeks later!!! I wouldn’t dare complain I was just happy to get something started in the way of removing this from my body. So the 14th April arrived, in went down to theatre to be woke up again with no opperation. The surgeons done an examination before they started the surgery and decided the cancer had spread to far and they would not get clear margins. I was then diagnosed at 2b. It feels like I have went to the back of the treatment que again. 2 appointments last week and waiting on PET scan appointment to confirm no further spread so they can start planning treatment again. I know that scans can take up to 2 weeks even for an urgent appointment and results a week or 2?? So far I have been waiting 66 days for treatment!!! Feel like I’m going mad here. Is this normal!

I'm sorry to hear your story.

It was confirmed I had cancer on Dec 8th. My treatment started January 4th. There seems to be endless appointmentsbefore treatment starts but once it gets started it zooms by.

Good luck X 

 

Keep us informed x

Hi philleepa, 

Thanks for your reply. So less than 30 days!!

What stage are you at? What treatment? Sorry for all the questions. 

Yeah - I am worried because my first scans didn't pick up this spread that it might have grown this far in my 5 weeks wait. I'm now probably looking at another 4 weeks until treatment starts. 

I have been off work now from I was first diagnosed. I'm lucky that I am receiving full pay at the minute but I don't know how long this will last and in still have anywhere from 8 to 12 weeks of treatment ahead.

x

Hi Siobhan I know it is really worrying all the waiting around thinking your Cancer is spreading. I was diagnosed on the 19th December 2015 and didnt start treatment until the 7th March like you my mind was going crazy thinking i would be riddled with Cancer by the time i started treatment. I spoke to the Consultant about my concerns he said they wouldnt let that happen and all the tests are necessary to find the best treatment plan for me. Cervical Cancer is  slow growing unless you have an aggressive type but this would of been picked up by the biopsies they took. I really dont think your tumour would go from 1b1 in 5 weeks to 2B. On the day I was diagnosed with CC i had gone into hospital for an Ablation when I woke up in recovery i was told i had CC and my tumour was 2cm so i would be having a Hysterectomy then after my MRI a few weeks later i was told my Tumour had gone into my Bowel. I had EUA and the Cancer hadnt grown into my Bowel and i was staged at 2B. I started my treatment on the 7th and the day i finished Chemoradiation I had an MRI i couldnt believe how much my Tumour had shrunk in 5 weeks it was amazing my Consultant showed me the before and after photos. I have just finished all my treatment on Thursday and feel positive they have got it all. I hope this is helpful you will be started soon and when you are the time goes in so quickly. I wish you all the best and hope you find some peace of mind. If you have any questions just ask. Lots of love xx

Hi Kumagill, thanks for the information.

You sound so positive about everything. I just can't seem to get to that state of mind again. I was at the start - telling everyone I was fine it's just a wee operation and I would be back to normal but I don't know what to say now!! My father also passed away in March with heart failure. The hospital/doctors kept talking about doing stints and maybe bypass surgary etc, but they had to cancel the operation because someone forgot to tell him what medication he should not take that week before the opperation. My dad passed away from a heart attack 2 days before his rescheduled surgary. He was only 68. I think I have lost all faith in hospitals right now.

Sorry for being so depressing. Thanks for letting men know things will get better xx

 

Hi Siobhan I am so sorry to hear about your father it is so sad.You are going through a terrible time I really do understand your pain my father was having a pace maker fitted and died of a massive heart attack at 56 it was a long time ago now but i still really miss him.  I Hope you hear word soon for your PET scan once its over things move along quickly. I hope your situation is resolved soon I will be thinking about you lots of love xx

Hi Kumagill, 

So sorry to hear about your father too. Just hoping time will start to heal the pain.

I have put my name down for clinical trial so might have to do 6 weeks chemo first before chemoradiation and internal radiotherapy. Just thought I might as well take all that's going. But this treatment all still depends on the results of my PET scan next Tuesday. They want to double check Lymph node involvement. I phoned my key worker today to ask about possible scan dates and she told me the letter had already been sent last week to me - most have got lost in the post. 

Thank you so much for responding to me and for the advise. You must think im very impatient, sorry. 

What's the next step for you now with follow ups etc?

Xx

Hi siobhan.  

Gosh when you say from my diagnosis till my treatment was less than 30 days it seems a shock. It seemed like forever.  I was told on 24th Nov tgat it was likely I had cc, the week after was my mri and the week after that was my proper diagnosis.  What an awful time it was. I gave up work on the day I found out for definite as I look after children and wasn't in a fit state to look after them. I think I sent most of my days posting on here

Once your treatment starts and you feel your symptoms ease you will begin to feel more positive.  For me, my bleeding stopped and my back stopped hurting so I knew it must be working, then around 3 weeks in, you get a scan to see if it's responded well enough for internal radiotherapy  (well I did!) Then when you hear it's working well you get a great boost!

I feel for you with regards your dad, I lost my sister 2 months before my diagnosis.  You go from grieving for your loved one to this trauma. After I'd been through my treatment, my sisters death hit me all over again unfortunately. However, I feel she's looking out for me!

Please be reassured that you are in good hands x they want to cure you almost as much as you want them too. I daresay everything takes time because they want to make sure you are having 100% the right treatment  x 

Hi Siobhan :-)

I'm so sorry that your experience is making you lose faith in hospitals and the doctors who work in them. My dad went in for a quadruple bypass operation at age 67. The surgeon left a swab under his breatbone which caused a cyst and he never came round from the second operation to remove it. Desperately sad and I still miss him after 25 years! Yes, occasionally a doctor makes a mistake, but it's far more often that they don't. I really sympathise with your delays and the frustration and anxiety it is causing you. All I can say is that your team WOULD NOT DELIBERATELY PUT YOU AT RISK. No matter how much we read up on this disease the specialist doctors who treat it know shit-loads more than we do and if they believe it is safe to delay your treatment then it is SAFE.

(((((HUGS)))))

Be lucky :-)
Tivoli