I’ve just had my biopsy results. I’ve uploaded part of the letter. After being reassured that it was taken as a precaution, I am now really worried. Could I have cancer?
Hi, the letter states that they are not concerned there’s anything sinister so I’d be optimistic about it. If they suspected cancer they wouldn’t have written that. Fingers crossed for you
In December 2020 I had a lletz for CIN2 which then came back as CGIN or AIS as they called it. I had a repeat lletz in January 2021 with a hysteroscopy and D&C.
The hysteroscopy is the visual check of the uterus and the D&C is the sampling of the endometrium.
The cells lining the top of the cervix, the uterus and further up are glandular cells, so having a result of CGIN could mean that those abnormal cells are actually coming from a different location than the cervix, eg endometrium.
That is why my consultant wanted to check my uterus to rule this out.
It was just a precautionary check and my results for the D&C came back all clear.
It sounds like your doctor is doing the same as mine - treatment of the cervix for the CGIN as well as sampling the uterus as an additional precautionary check to make sure they know that the abnormal cells are only coming from the cervix.
You should contact your doctor for more information and to explain the different procedures.
Thank you. I did contact him today and unfortunately I wish I hadn’t as the wording of the letter sounded more reassuring than he was over the phone. I know I was basically asking him to tell me it wasn’t cancer but he said although he’d love to be able to give me that reassurance this is the reason for doing this procedure. He basically said he only has a very small biopsy to go on at the moment and in this procedure he will biopsy a bigger area. The letter says he’s not concerned there is anything sinister but on the phone it was more like I won’t know until I’ve had the results.
I’m glad your results came back all clear. Did you have a general too? Can I ask what your side effects were afterwards and what your follow up appointments/checks are going forward? xx
These doctor communications are so different to what I was used to in South Africa, my doctor would phone me personally to read the pathology report and answer questions and would then email it to me also….and these waiting times are ridiculous compared to SA!
Anyway, I had the first lletz under Local at the colposcopy clinic. I went home by bus afterwards with no immediate symptoms. Within 2 days the “normal” bleeding and discharge started which lasted for about 2 weeks.
Second lletz was under General due to the additional D&C that was performed. I was in hospital for half the day and went home within 1 hour of waking. Symptoms were the same as the first lletz with discharge and bleeding for 2 weeks, Except for immediately after I had a lot of bleeding in one go just as I got home and climbed out the car, soaked right through my pad. It was worrying but it only happened once and I suspect it was because of the D&C not the lletz.
They gave me antibiotics after the second, with the reason “we opened your uterus during the D&C” so I took those to make sure I didn’t get an infection.
6 weeks after the second lletz I had a follow up appointment to just make sure I was healing properly, this was just a visual check of my cervix. I followed all guidelines during this time, no baths, no sex, etc.
In July I had my 6 month colposcopy and smear follow up and I am now waiting for those results.
Because of the CGIN, my doctor said I would be called back every 6months/1year for smears and this could be for the next 5 years or more depending on my results.
There was a lot of blaming, soul searching, crying, and more during these last months, always asking “why me”. But now I have my stress under control, eating a healthy balanced diet, exercising regularly and just feeling emotionally stronger. My husband and I are even trying to conceive now.
We are stronger than we realise and can get through anything, the ladies on this forum are proof.
Thank you. Good luck with your results in July and conceiving too. Please keep me updated.
I’m glad your stress is under control. I must admit right now I’m struggling. I’m a mum to a 10 year old and 5 year old, they are my life and I’m trying not to go to the bad place. My hystercoscopy is this Monday so at least I don’t have too long to wait.
KittyCat01, I admire your positivity. I think we’ve all had our moments when we’ve been a mess and then you read on here that people are out the other side and feeling so positive. It gives other people such hope. I’m also waiting on results 6 months post cold coagulation for CIN 3 changes. Fingers crossed with your results and good luck with trying to conceive.
Lynnie1, best of luck for next Monday. Waiting for procedures and results etc is the worst part but this time next week it will be done with positive news I hope. Try to do nice things and keep yourself busy leading up to Monday.
Hi. So sorry you are having to go through this and I wanted to share my story to help prepare you and make sure you ask the doctor all the right questions.
I was diagnosed with CGIN and CIN II in November last year. I had a LLETZ (the sample he took was wider than necessary) and it came back with no clear margins. I was given a stark choice: do another LLETZ - but he had already taken wider than usual the first time, and I was warned that subsequent smears which I would have to have every 6 months until clear, may not be reliable due to the heavy scarring the LLETZ would cause. so the second choice was a hysterectomy. Needless to say when he told me the options, I was distraught and very confused about what to do. A hysterectomy seemed so final. I am 43 and have two children and my family is complete so I didn’t have that issue but the operation and recovery and related possible side effects were so worrying. anyway, after a lot of soul searching and discussions with my husband and family, I opted for the hysterectomy which I had in Feb. I was still unsure up to the very day of the op and so scared about what it would mean for me. Luckily it was found that I had made the right decision after CGIN was found high up in the cervix and would have turned into cancer eventually and probably remained undetected.
I had health insurance so was at a private hospital and which I think is probably the reason I was offered a hysterectomy right away. from what I have read and been told, the NHS follows a more cautious course to treatment with second LLETZ and cone biopsies etc, which are right for many cases.
I don’t mean to scare you but I wish I was more prepared when I first saw the consultant for a colonoscopy so I could ask the right questions.
I am fully recovered from the op and no longer have the worry about whether or not cancer will develop, I have vault smear next month and then another in 12 months before I am discharged. I kept my ovaries so dont have the issue of surgical menopause. recovery was hard and seemed long at times but six months on, I feel good and know I have done what I needed to ensure I am here fit and healthy for my kids.
Remember though, everyone’s situation is different and you will probably find you are more easily treated. I just wanted to share my story since I was totally unprepared for any of these outcomes when I first got my abnormal letter.
good luck with everything and do ask for help - more people you know will have gone through this sort of situation than you realise but just dont share their experiences because stigma remains with HPV unfortunately. xx
Thank you for sharing your story. I am 42 and I also have two children, my daughter is 10 and my son is 5 so our personal circumstances are similar. I am also doing this through private health care as anxiety was getting the better of me. This has all been a bit of a shock to be honest as until May all my smears have been normal. I also found out at the colposcopy my smear showed low grade changes and it was played down that the biopsy was a precaution. I was obviously still worried possibly fear of a higher CIN grading that would require more treatment. I had never heard of CGIN. The consultant said on the letter that he wasn’t concerned that this was sinister but then he was a lot less reassuring on the phone and did say these further procedures are to rule out cancer but couldn’t confirm it was definitely pre cancerous. I know rationally no doctor can do that without all the information but the uncertainty of it all is very frightening.
I guess the fear is that all the way through this process the results keep coming back as a little bit more than they were expecting and I’m scared where this will end.
Like you my priority is to be there for my children and see them grow up.
I find the prospect that this could lead to a hysterectomy a bit daunting but not as much as the alternative. I know this would be a million times worse if I didn’t have children. Due to my anxiety I would rather be over cautious than have the constant checks and worries that this could return. It’s worrying that future smears could be unreliable too and would I always be doubting my results.
Can I ask you a bit more about your hysterectomy and recovery? My doctor did already ask about my openness to a hysterectomy so he is obviously thinking along those lines as a potential option. Although I’m aware what a hysterectomy is I’m a bit naive to the side effects, recovery time. I also know there are different types that make it a less invasive operation than it used to be.
I’m glad you’re feeling much better and it sounds like it was absolutely the right decision for you.
My doctor didn’t give me any black or white answers - when I first went for an examination, he saw how worried I was and said this isn’t cancer, but come back for a LLETZ. I was totally unprepared for how invasive that was as well. When he gave me my biopsy results, he didn’t favour one option or the other but he was convinced that the smears after wouldn’t be as accurate. Luckily he was right that the hysterectomy was the right option for me.
I had a laparoscopic hysterectomy - so keyhole surgery - which was less invasive and faster recovery. I was sore for first weeks but managed with over the counter pain killers. The ONLY issue for me was three days of heavy bleeding at the 14 day post op mark - this was super scary and I called the ambulance and ended up in A&E for scan and examination. All fine though - apparently this can happen when the swelling goes down any build up of blood just flows out. I WISH someone had warned me that this could happen. Anyway it stopped and I have had no issues since. I chose to keep my ovaries as I have a low risk of ovarian cancer and I didn’t want to endure menopause just yet. Sex was a worry but doc told me to wait until after 12 weeks after the op - think it was a bit longer and then no need to worry, all fine. Six month on the only side effects I have had is maybe a lower sexual urge but not sure that’s not just the stress of work and being tired with kids etc. I will have to do pelvic floor exercises every day forever to lower the risk of any prolapse - this was a major concern for me but as I had no prior issues my doctor wasn’t concerned about this.
After the op, you cannot lift anything heavier than a kettle for at least those first 4-6 weeks, and no baths or sex. I went back to work (desk based as home) at 6-7 weeks after and that was probably too soon as my stomach still swelled from sitting too long, you need to rest but really remain as active as you can. I would say 8 weeks would have been a better restarting work date but I work for myself so not an option. After 12 weeks, I really felt much better and again after 4, 5 and now 6 months I can forget I have had the operation!
Thanks for sharing this makes me feel that I can do it !! hysterectomy is probably my next step but is hard to imagine what will happen after and I worry about sex and the pain of the recovery . Your positive story gives me hope
Thank you, that has been really helpful. Can I ask was the hysterectomy suggested because you didn’t have clear margins? I was wondering if biopsy results come back with clear margins do they then not advise a hysterectomy? I’m assuming the issue with scar tissue and smears is still a risk regardless.
Hi. Yes I didn’t have clear margins so was advised to be sure they got it all to consider a hysterectomy. I could have gone for the second LLETZ, which may have worked but because it was CGIN and not just CIN he mentioned the smears dont usually catch CGIN if it’s too high up. These are all good questions to ask your consultant next time you see them. But be prepared for them not recommending one option over the other as all they do is present the facts and you will need to decide. My view is though with cancer, best to get rid of them as best you can. I read almost all the internet articles and forums on this and found this to be the prevailing view.
Thank you. Did you find a hysterectomy emotional? Our family is finished but the prospect of a big operation is scaring me.
My letter also said they were looking for CIN but found CGIN. Does that mean I don’t have CIN? Can you have CGIN without CIN? Sorry for all the questions. x
Not a problem at all - I’m really glad to help anyone considering all the advice I was given from this site and others.
I was a wreck when I was first told I should have the op. Telling my mum was awful as I had to explain about HPV etc. Anyway, she was amazing as always and very supportive of me having the op. My mum’s cousin had one years ago for fibroids and she was a great help too. I had friends who told me they had a LLETZ years ago and that the op sounded too drastic so comments like that made me wobble a bit. I also was so worried about not feeling like a women again, losing my fitness (I’d just lost 2 stone and was as fit as I had ever been) and worried about sex life too. So yes I was emotional - who wouldn’t be?! And due to COVID I was all alone at the hospital with no visitors for the op and when I went to A&E, which was rough. like most, I was usually busy rushing around after kids and everyone, but I forced myself to sit for weeks and not do anything. my husband was amazing and cooked and took care of me and kids so that support is essential.
I had CGIN and CIN - CGIN is in the neck of the cervix and CIN is on the surface. I think you can have one without the other. CGIN is more dangerous I’m told and more aggressive if it turns cancerous and harder to treat. I read a lot about high grade and low grade CGIN, when I asked my doctor which I had, he said all CGIN is high grade.
Ask all these questions to your doc. Write a list and take it with you as with all the emotions you may forget something. I always feel like I’m taking up the doctors time with too many questions but this is an important decision and you need to know all the facts before you sign that consent form!
Thank you. CGIN certainly sounds more frightening due to it being difficult to monitor, I just hope they don’t find anything more sinister. The doctor said he only took a small biopsy at the colposcopy so he needs to remove a much larger area to know exactly what’s going on. I’m trying to stay positive but then the what ifs creep in.
What if the larger biopsy shows cancer? What if my previous normal smears have missed the CGIN changes and this has been going on longer than we think.
I don’t even want to type my fears about my kids if there is anything more going on……I’m sure you know though.
I know I just need to stop my mind wandering but it’s not easy. I know the doctor can’t give me any guarantees on Monday until he gets the biopsy results but hopefully I can get a little bit more reassurance from him.
Hi. This reaction is so normal and even has a name “cancer head”. Wait for the results, take your mind off it and do something fun this weekend with the kids. I had an abnormal smear when I was 23 so always knew I would have to deal with it again. This type of cancer is very slow growing, which is why smears are so successful and detecting anything before it gets too serious. You are strong enough to deal with anything that comes along - the very good news is that this is not cancer and you are being tested and monitored and have the expertise you need to deal with it.xxx
Hi Lynnis, just wondering how you got on today? I was thinking of you and hoping it was reassuring and good news x
Hey, yesterday went well. I was soooooo nervous but now I’ve had a general I wouldn’t be as scared now. In fact I think it might be the way to go
The consultant came in to see me afterwards, he said he didn’t see anything sinister and he believes it’s all precancerous although he will need the biopsy results to confirm. He wants to see me in two weeks to discuss the results and a possible hysterectomy as a plan going forward. A couple of weeks ago I would probably have found that possibility terrifying but thanks to the great advice on this forum it’s now a lot less daunting and something I am very open to. x
So glad you are reassured and feeling good, and the results are looking good x