Fed up with waiting-worried it's taking too long to get treatment

Hi! This is my second post, the first one was about disappointment in my consultants.. Well it has been 6 weeks since my diagnosis and I still have no answers about treatment. I had a smear which showed CIN2 in April, colposcopy with biopsies in May which showed CIN 2 and LLetz in June where they found 1b1 cc with unclear margins on one side, though endocervical margin was clear and it seems the lesion is very shallow-only 2.7mm.. I was told the diagnosis on the 16th of July by a different consultant because mine was on holiday at that time. Since then I have had an MRI and an internal MRI and now appointments have been arranged for me to get the results, I have only managed to get my GP to tell me that the first MRI seemed clear. My next appointment is on the 27th at the Royal Marsden and it will be nearly 6 weeks after the diagnosis. I haven't been able to get in touch with my CNS all this time either as she is on holiday too.. I am so worried that it's taking too long time, noone is telling me anything about my results and I spend so much time worrying that it's worse than I hope for..

I have also been put off calling my consultant as when I called him after the first MRI he was very rude and wouldn't give me any information regarding the result.. I have also developed a stitch like pain in my right side and panic about it being related.. It seems that the time the whole thing is taking is out of NHS guidelines and I just hope that if it would be urgent, I would have been contacted and asked to come in earlier, though I'm not sure..

Has anyone else been in the same situation? I feel very anxious and my imagination is not doing me any favours. I also keep thinking that perhaps I should spend this time collecting some eggs for embryos, but my initial referral to Royal Marsden was for the fertility sparing surgery so I'm hoping for trachelectomy as I don't have any children.. Now I'm worried that after all this waiting I will be told that I don't qualify and don't have time to go through egg collection..

Just feel completely in the dark, and it doesn't feel right that I have to wait for answers for this long..

xx Anna

 

Hi Anna 

Big hugs it is a horrible time waiting it's definitely the worst part.  Cervical cancer is a slow growing cancer so I know it seems like forever for us but the doctors wouldn't let you wait if it was urgent. 

It is well documented on this site of people having all sorts of pains and it's probably a combination on things, stress and you are very in tune with your body so any ache you will worry. It's all natural normal feelings you are having. 

Depending on where you live you could call Palls they deal with nhs complaints and can speed things up too. 

Lots of love xxx

Hi Anna

I can sympathise having been through similar myself.  It is a struggle to face the unknown when you don't know how bad it is and when and what the treatment will be.

My smear was April 2012, then colposcopy and biopsy, followed by lletz in early June, diagosis early August and operation late sept.  My mind worried that it was spreading while I waited and I had many dark days and nights.  It took 4 weeks to get my operation date but i felt much more in control when I did and knew what I was facing.

i called my cns in tears quoting the fact they were nearly breaching their diagnosis to treatment times and what date it would be breached.  I had seen 3 different consultants between diagnosis and treatment due to holidays.  I was called the very next day with a date :) they called my consultant on holiday in Turkey to sort it out.

i had a lot of upset and worry and despite unclear margins in my lletz there was no evidence of cancer left when they did operate!  So it wasn't spreading at all while I drove myself nuts with anxiety.  

I hope this helps, good luck and best wishes

Kirsty xxx

Oh bless you Anna,

Everyone here agrees that the waiting is the worst bit and it does sound very much as though your wait is uncommonly long. It's just very unfortunate that your diagnosis has coincided with the start of the school holidays and I assume that medical staff who have school age children have to be allowed to take their holidays during this period. Having said that, I would be very surprised if they were to put you at risk, so you need to try to remind yourself that your situation is unlikely to be getting worse while you wait.

(((((HUGE HUG)))))

Be lucky :-)
Tivoli

Hey Anna,

 

Big hug! The waitings horrible, especially when there's so much that goes through your mind. Although many people have been on leave, don't be put off calling the departments to get those appointments or the CNS for support as well as here.

 

Fertility was one of my biggest worries, I also had 1b1 and was treated with lletz and a cone biopsy. My surgery was successful (they had got most out with the lletz and only removed 1mm surgically). I read a really positive post from a lady as I was going for surgery who had just had a baby after treatment for 1b. 

 

It's really unfortunate timing, keep the positives in mind. 1b is an early diagnosis can be managed with fertility preserved, it sounds like your MRI is ok, and we are here whenever you need a rant or chat xxx

I'm sorry you're being kept in the dark, it's not right that we have to fight to find out information about our own bodies and certainly sounds like your consultant is a bit of an arse. My cns also went on holiday and didn't reply to my emails so I turned to my gp who was brilliant. She couldn't give me many definitive answers but she was there to listen and reassure and that's all I needed. Worth a try. Hope things start to brighten up for you soon and you don't have to wait much longer. Keep getting on their case. Xxx

Thank you everyone for your support and words of reassurance! Getting diagnosis during the holidays seems like an unlucky timing for sure:)

I'm trying to stay positive and think that if they saw anything urgent they would have contacted me earlier, however there's always that thought in the back of my mind that maybe they wouldn't?! I have my appointment on Thursday and dreading it in a way but at the same time look forward to getting some answers and a clearer picture.

I've also read lots of positive stories here which are wonderful, and I so much hope for a positive outcome in the end of this and putting this behind me..

Rhi, may I ask you how come you were treated with a second LLetz rather than a tracelechtomy? Isn't that quite unusual? I have read a lot of research papers on internet which seem to indicate that the depth of invasion is more important than the horizontal size of the tumour and wonder if you had Lletz because yours was a

shallow tumour? 

I am also concerned about a possibility of lymphoedema developing after the removal of lymph nodes (providing I even qualify for surgery) as I'm an athlete and my work includes lots of exercise and being up on my feet the whole day so obviously the possibility of complications scares me a lot too as it would affect my life in a major way professionally.

Once again, thank you for your replies, it's nice to know I'm not alone in this and that you all can relate..

xx Anna

 

Hi Anna,

i too had trouble understanding what my consultant was up to and we kept missing each other with holidays, I ended up postponing treatment becuase I just didn't understand what was going on. She properly told me off. One of my biggest concerns was about lymph, so I will tell you what I was told and you might use it to ask questions when you have your appointment. 

She said that nowadays they remove the nodes that are close to the blood vessels that supply the area near the tumour, rather than removing everything they can find.  They had to remove it to test it. This reassured me, although immediately before surgery the covering urgeon said 'and we'll take as many lymph as we can' and I just didn't have the wherewithall to correct him. I could have, though!

i have found it really helpful to visualise my lymph vessels all reconnecting through and around my pelvis, the surrounding lymph nodes being stong and easily pumping lymph around my body, trusting the lymph system to heal itself beautifully. Lymphoedema is less common with the removal of the pelvic nodes. As opposed to the groin nodes., AFAIK .I am only 2 weeks post op and whilst I have swelling if I stand for too long I don't anticipate this being the case forever. I think it is important to rest for a long time to give lymph vessels the opportunity to connect without being forced by too much activity (easier said than done). I hope that if you do have surgery you find a way to support your body to heal, an integrated health doc that I saw said that the body is brilliant at healing after surgery and as you are already fit and healthy you are likely to find your recovery to be great, you can support it with diet and herbs or whatever floats your boat! 

Best of luck.

heyHi Anna,

 

Sorry for the slow reply, was the appointment last Thursday? How did it go?

 

So is had a lletz, from that they estimated I had a 9mm x 1.5- essentially long and thin. They then chose to do a cone biopsy and due to it's length also did take out my lymph nodes. He felt that in mass it was small but they had to take the lymph nodes because of the length. Thankfully - nothing in the lymph nodes. Trachelectomy was never discussed, as there was only 1mm remaining the cone biopsy did the trick. I never questioned it as I trusted the consultant-but from pre reading had almost prepared myself for a trachelectomy.

 

Surgery was fine... Lymphoedema is a small risk, I am a physio and so understand your concerns. I am up and running about all day (actually did not realise how active I am at work until this). Following lletz I was on light duties, following the surgery I had 6 weeks off work (although I thought initially that might be too long- given he nature of my job I felt that was good, so spent my time outdoors walking and building up my exs tolerance). I'm on a phased return light duties and reduced hours. Although I'd say I notice some puffiness, esp towards the end of the day I haven't had problems with Lymphoedema. And after 2 weeks back at work feel quite positive that I'll be up and running as normal within the next few weeks.

 

Let us know how you're getting on xx

Hi Rhi! Thank you for the information-I guess it's up to every consultant to decide the treatment, and also you having clear margins probably helped!

Yes I had my appointment on Thursday, they confirmed the stage as 1b and said they would do a trachelectomy. I'm very relieved it's not worse and almost happy to hear I need surgery only at this stage, of course still have to wait for the lymph nodes results after surgery.. Not sure if I'm just very unlucky but NHS continues to not impress-my appointment was 1.5 hours late-the waiting is bad enough but when you sit there waiting for such important news-it's agony. Then it turned out that the oncologist I was waiting to see for 4 weeks because he's been on holiday was too busy so I had to see someone else instead, which is fine but then I could have had the appointment sooner.. They booked the surgery for the 2nd of October which is another 4 weeks wait from now and I do think that the waiting seems very long providing I had my smear in April and Lletz in June.. There's still a small residual tumour there, so I just want it out.. It's a big relief to know it's early stage and I can relax a little for now..

Thanks for all your messages, more updates to come! Take care all of you out there!!

xx Anna

 

not long to go now... Hope you're keeping ok.. Let us know how you're getting on.

knowing that they're going in having a good look around and getting it all out is a strangely comforting thought isn't it.

hope you're doing well xx