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Help/guidance please HPV Positive/CGIN

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kimbo2226
Help/guidance please HPV Positive/CGIN

Hi there

I'm completely new to this forum so apologies if my understanding isn't very good.

Just to confirm I'm 39 and had the results of my routine smear at the end of July which confirmed I tested positive for HPV (I freaked out as I'd never heard of this and have been with my husband for 20 years) and also confirmed I had abnormal cells in my cervix.  A colposcopy was booked for me two weeks later.

I attended the colposcopy and the consultant explained my cervical changes were severe CGIN changes which are more complex to detect/treat.  I had a LEETZ treatment that day along with a womb biopsy.

I received the results letter following the colposcopy in mid August the letter confirmed there was no evidence of cancer or serious disease but that my results would be discussed at their next MDT meeting.

Three days later I received a further letter confirming the results contained CGIN which are non-cancerous but potentially pre-cancerous cells and that I need another smal procedure similar to the one I'd already had.  An appointment was made for 23/09.

I attended the appointment expecting to have another small LEETZ but before the consultant performed it he again said I had CGIN changes and drew me some pictures explaining they were higher up, glandular and hard to detect/treat.  He then asked me if I wanted children and suggested a hysterectomy may be the best option if I didn't.  This obviously came as a massive shock as the letter said I'd just need another small procedure similar to the one I'd had.  He could see I was shocked and a little upset and said he'd be happy to perform the LEETZ again that day first to which I agreed.

Unfortunately he couldn't do the LEETZ under local he had a look and said it wouldn't be safe to do and said I'd need a general.  We then went back into the room and he said he could either do the procedure I was going to have under general or a total laparoscopic hysterectomy and was trying to suggest the hysterectomy may be the better option, he said not to make the decision then and to go away and think about it.

I left in complete shock and have some questions as I'm a little confused.

I have never missed a smear, does anyone know how I can go from normal results for the last 5 smears to severe CGIN changes? (the consultant didn't really answer this)

Is a hysterectomy the best option for severe CGIN cell changes?  Has anyone taken this route?

I've seen so many stories on here with people talking about 'margins' or 'clear margins' what does this mean?  None of my letters/results mention anything about margins and the consultant hasn't either the only thing they've mentioned is the sample containing CGIN.

In addition to this I've also been experiencing a pressure feeling in my bottom/tailbone area.  This started before I had the first colposcopy.  I went to my GP who didn't seem concerned and gave me a urine test to do. I also mentioned it to the consultant at the second colposcopy and he again didn't really seem bothered by it.  The pressure feeling is still there in my bottom, there's no pain but I do get occasional itchiness.  I'm wondering if it's anxiety related but I'm just not sure what to do.

I'm feeling very confused and anxious, I'm going to have the hysterectomy if that's what the expert thinks is the best option, but do you guys think my GP could help with explaining everything to me in more detail to make it clearer?  The consultant is lovely but I found him very matter of fact and also very difficult to understand with a mask on.

So so sorry for the essay.  Thanks for taking the time to read/respond.

Kim

 

Jenjen87

Hi Kim,

firstly, sorry you are experiencing this.

I too have CGIN (only found via biopsy) the cells are deeper in the endocervix rather than the Ectocervix so they are harder to pick up on a smear.

The results of my biopsy were CGIN and changes likely to represent invasive malignancy. I was then referred to an gyn. Oncologist. I had a cone biopsy on Monday which can sometimes remove all the cells (even CGIN). I get my results Tuesday night. If they are clear Margins then I am free, if they aren't then I imagine I will have to go down the route of hysterectomy etc. 
When they speak about margins; they are referring to whether or not after excising the cells if there is an area of normal healthy cells surrounding the abnormal cells. If the abnormal cells continue all through the biopsy then further removal is required.

If you aren't comfortable with what you are being offered, seek a second opinion! Good luck, it is a very stressful thing to go through

xx

kimbo2226

Thank you so much for taking the time to reply.  I'm sorry to hear your story and wish you luck with your results.

The letter was very clear that my LEETZ biopsy showed no evidence of cancer or serious disease and they also confirmed the womb biopsy was negative and the consultant reiterated that to me last Tuesday.  He actually said 'you do not have cancer'.

I'm assuming the cell sample taken from the LEETZ still showed CGIN and that's why a second treatment is required under GA.  He really did seem to be recommending the hysterectomy but this seems very drastic if there's no sign of cancer.

I will obviously take the advice of the expert and have the hysterectomy as I do not want children but I think a call to my GP is also needed as I really need to understand these results more clearly and also discuss the pressure I'm still experiencing in my bottom as I believe HPV can affect that area as well.

Thank you for your lovely reply.

Kim

 

 

Jenjen87

I have read that if the LLETZ treatment isn't effective or the cells are wider spread that with CGIN especially, if you have either had your family or are not wanting children, they recommend Hysterectomy to eliminate the chance of the cells progressing to cancer.

1000% go to your GP. Or have you tried phoning the number on this website? I have heard they are helpful, they might be able to point you in the direction of some good resources!

Good luck x

FeelingTheFear

Hi Kim 

I had squamous cancer and CGIN. It was explained to me that CGIN has the potential for "skip lesions" which means cancerous changes can occur inside the womb, separate to any changes that can occur on the cervix and be picked up by smear/colposcopy. CIN tends not to behave like this and causes cancerous changes to squamous cells which start in one place and spread from there, rather than "skipping". In that sense CIN behaves somehwat more predictably than CGIN.

You have a very difficult decision to make, I know how that feels. I had to choose whether to take trachelectomy and leave the uterus, or take it all out. Its horrible to make a decision like this and especially if you haven't someone you can ask for more info. Luckily I have 2 doctors in my family and they gave me their honest opinion which really did help to guide me.

I would 100% recommend calling cancer research, and also macmillan, and speak to one of their specialist nurses who can give you medical advice and perhaps help to think of questions for your gp to get the most from your time with them. 

Good luck xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

kimbo2226

Thank you so much for taking the time to reply.

Is there a specific number I should call to speak to cancer research or Macmillan?

I will wait for my GP to call me first I've request a call today if I don't find them much help I'll call one of the numbers you've recommended.

I don't actually know who my GP is there have been so many changes at my surgery I don't know who most of the GP's are any more.

Thanks again

Kim

FeelingTheFear

Hi Kim 

Macmillan 0808 808 00 00 (7 days a week, 8am-8pm), I think its option 3 to speak to a nurse 

Cancer research "speak to a cancer nurse" 0808 800 4040

I know you don't have cancer, but they will surely be able to help you with the decision you have around preventing cancer for the future. They won't tell you what to do but will be able to talk through any questions you may have. I certainly found them very knowledgeable and kind x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Abilene

Hi,

I've just noticed this post and wanted to comment. I'm not sure what I think about your Dr......I am suprised he has not mentioned a cone biopsy? I don't know how big your Lletz sample was but usually they take around a centimetre sized chunk. A cone biopsy which is also done under a general anaesthetic (although I managed fine with just sedation and lots of local - either way would need to be performed in theatre) can take a much larger piece, up to about 2.5cm. This may be enough to remove all of your CGIN without the need for a hysterectomy at this stage? I would ask him about this, and if you are not happy then I would definately get a second opinion. I certainly would not rush into a hysterectomy at this point if it were me......I don't know if Macmillan or cancer research were helpful for you as you have not actually been diagnosed with cancer. That is why I think this forum is so wonderful as it helps people who are not at this stage but are still going through a very difficult time emotionally. I found the ask the expert section on here very helpful. My GP was also very helpful although they can sometimes bow to the consultants 'expertise', though not always......hope yours was helpful.......

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