Been asked to go back for "further management" after CIN treatment

Hiya - new to this site but just feel down at the moment so feel like I need to talk about my situation… white patches were found about a year or so a go referred to Colposcopy but then found out I was pregnant so they kept an eye on me but had to have the biopsy a couple of months after my baby boy was born in January this year. Results were CIN3, no evidence of cancer but had to go in for a loop excision 3 weeks ago plus they took an extra biopsy. All seemed fine from the doc… but today my results came through saying I needed to come back in discuss further management!!! And I can bring a family member or friend with me… this has just worried me! I phoned the hospital, doctors who also rang the hospital but noone can give me my results over the phone! The specialist nurse rang me back & said when shes back in on Tuesday after the BH weekend she’ll see if I can get an earlier appointment. Now I appreciate theyre busy but I have a whole weekend with me & my baby & just worry worry worry, all sorts going round in my head… the worst of corse. Even my doctor read the letter but couldnt get the results & she said the letter wasnt very nice but nothing she could do. I just feel like their letters are so vague & just worry people!! I shouldnt rant because I know they work hard but the results were right in front of the specialist nurse so why couldnt she just tell me but apparently they just dont like to over the phone. I feel like its going to be a long wait… but will try & think positively & go for nice walks with my partner & baby. Can anyone tell me what I should expect?

I can't help you with what to expect but I did want to sympathise with you. There is so much waiting and worrying that goes with all the tests/procedures we have to go through. I know that some of the time delays are inevitable - labs can only work so hard etc, but there does seem to be a whole layer of protocol that doctors use with results that could use reviewing.

I totally understand that it is probably not a good idea for a doctór's receptionist to read results over the phone, but surely a specialist nurse/doctor could read them and explain the basics over the phone ahead of the appointment. That way we could absorb the news and plan the questions to ask. Otherwise, we arrive at the meeting, get hit with difficult news and our minds go blank. Either that or the entire doctor's office should lie and say the results are not back yet.  There is something infinitely worse about knowing that the letter is right in front of someone who will not read it to you. I'd rather they said it wasn't there.

I do wonder if the doctors and nurses involved truly appreciate the worry that we go through. I mean the dead of night, scared to death, utter despair we all go through. I know much of it can't be avoided and we soldier on because we have to, but any tiny thing that could be done to lessen our load would mean so much to most of us. We all seem to do better once we know what we're dealing with, even if it's not the news we want.

I live in the US and all my results have been over the phone; twice by the doctors involved and twice by their nurses. Yes it was bloody shocking, especially getting  the diagnosis, but I was home, which helped and they stayed on the line to answer the  questions I had. Still had follow up appointments.

Try to enjoy your baby and not beat yourself up with worry.  I'm sure tons of ladies will jump on with support and advice. I hope everything turns out well for you.

Waiting is the worst feeling. My smear result arrived over the easter weekend. I am a nurse and take smears as part of my job and I have still felt all the anxiety everyone else has. I was told at biopsy I would probably just get my smear repeated on a year and then 4 weeks later after no results rang the secretary who told me I had an appt booked for the 24th may. It took her all day to find out what for and wouldn't give me my results. I got them on the day of my treatment! Now waiting for those before seeing what is next... Hopefully a smear in six months but every letter I get seems to bring bad news. Never considered myself anxious until I had palpitations opening another letter from the hospital.... It was two lines telling my gp I had attended for loop and said the procedure was uneventful.... Not how I would have described it! Sometimes the fear of not knowing make everything seem worse. 

Try and stay strong and depending on the wait see if you can take a cancellation. I rang every day but got one 2 weeks sooner than I would have been seen x

Thank you for your reply. I agree - I just think the letter they sent me was badly written. Exactly - thats what I was hoping for but she said she couldnt give results over the phone even though it was right in front of her. Ridiculous I think! She said she'd try & see if theres any cancelations after BH weekend but what does that do for me now?! Im laying in bed worried as hell with a nearly 5 month old baby - everytime he smiles at me I just cry. Its just got me too emotional & I dont even know the results... thats the worst thing! They think they understand & try to sympathise but I agree I dont think they really do. Aw how are you now? Hope all is ok. Thank you for your kind words. Xx

Hi everyone 

I have also been waiting for my letter to arrive in regards to my results being discussed at a MDT meeting.

thr letter confirms CIN 2 CIN3 plus high grade CGIN. now I have to go to a meeting namely to discuss a further LLETZ if possible or to monitor for 10 years. Has anyone else had similar experience 

 

Did they send you a letter or did you have a phone call saying you have another appointment? Did they say in the letter you have to have another Lletz treatment? My letter says nothing but theyve booked me an appointment to discuss "further management" & I dont understand what that means!! Either its worse than they origionally thought at CIN3 or like you I need more of the treatment done... 

Thank you for your reply. It helps knowing a nurse understands because sometimes I dont feel they all do! Yes same bad news with each letter of mine too its so upsetting & frustrating all this waiting. Uneventful??!! Thats not a nice way to put it. Yes it is the fear of not knowing. What made it worse after the terrible letter they sent me was I phoned the hospital & I understand recepitionist arent medically trained to give results but the specialist nurse was & it was right in front of her, i told her how distressed I was & she wouldnt give me them over the phone. My doc was brilliant ringing around trying to get the results but couldnt. I am going to try & get an earlier appointment on Tues but Ive just worried all weekend & will do until I know my results!! Thank you. When do you get your results? Xx

Thank you for your reply. It helps knowing a nurse understands because sometimes I dont feel they all do! Yes same bad news with each letter of mine too its so upsetting & frustrating all this waiting. Uneventful??!! Thats not a nice way to put it. Yes it is the fear of not knowing. What made it worse after the terrible letter they sent me was I phoned the hospital & I understand recepitionist arent medically trained to give results but the specialist nurse was & it was right in front of her, i told her how distressed I was & she wouldnt give me them over the phone. My doc was brilliant ringing around trying to get the results but couldnt. I am going to try & get an earlier appointment on Tues but Ive just worried all weekend & will do until I know my results!! Thank you. When do you get your results? Xx

Hi, 

it does state in the letter that they would likely perform another LLETZ if feasible, which suggests to meet that it has all not been removed as the letter does not say anything about my previous LLETZ and if that was successful. But it did say there were no other cell changes 

I did phone up and speak to a nurse though who also confirmed I would need more treatment but said she didn't have my notes so if you can phone up and maybe they can give your more information.

hope you get some answers soon 

big hug 

Hi, 

it does state in the letter that they would likely perform another LLETZ if feasible, which suggests to meet that it has all not been removed as the letter does not say anything about my previous LLETZ and if that was successful. But it did say there were no other cell changes 

I did phone up and speak to a nurse though who also confirmed I would need more treatment but said she didn't have my notes so if you can phone up and maybe they can give your more information.

hope you get some answers soon 

big hug 

I did try phoning up but they wont give any results over the phone or tell me anything further... so will wait until Tues to see if I can get an earlier appointment. Hope your second treatment is the last. Keep us posted! Thanks xx

I was told he wanted to see me in 4 weeks and then 6 months. I asked about how many loop excision a they can do as my sister has had 2 as well and they said they can do several but it depends on the history and that they could do a cone biopsy or hysterectomy. Being a nurse he didn't hold back and was very frank. Waiting for genetic screening as well so that may result in hysterectomy anyway... I am only in my 30's and I am not sure that knowing more has helped my anxiety.

Have you got CIN or CC? Hope it gets sorted for you soon. Xx

Hi Chloe I spoke to you on my post. I didn't get a phone call I got a letter just like you. My letter said 'to discuss results' when I got there she said they hadn't discussed them in the MDT meeting yet and that they happen on a Monday but with it being bank holiday mine won't be discussed till week after. Maybe yours has been discussed in MDT meeting and that's why your letter says further management? Every amazing lady iv spoke to on here who do get staging of cc have received a phone call with an appointment so I'm really hopeful that your story may be like mine especially since they are willing to wait 11 days and your last colposcopy didnt show signs of cc. If it is cc it is such a slow growing cancer like someone said to me out of all the cancers this ones a pussy cat! Positive thoughts hun I'm keeping everything crossed for you big hugs xxxxxxx

CIN 2/3 big jump from a borderline smear. The genetic screening is for ovarian cancer risk due to rubbish family history. 

I  taking to a doctor I work with who told me that I needed to go. I had a fight getting a referral even though the risk is there. The gp made me feel like a big inconvenience and did the ref after he got a letter from colposcopy asking him to refer me.

 

 

Thank you i will keep positive & hopeful! This site has really helped me get through this weekend its been amazing! Xx

Hope all goes ok for you xx

Oh bless you. Its horribe the way they make people feel. Go with your gut & do what you need to do its your own health. Hope all goes well xx