Doctor says I have a "small cancer" - 26yrs old and freaking out (pg mentioned)

Recently diagnosed with cervical cancer
1

Hello all,

 

I'm looking for advice on what to expect and how to understand what's going on, because it's a bit confusing for me (well, a lot confusing) and I've been driving myself nuts on Google.

 

Here's my story:

 

In June I had a routine pap smear which came back with abnormal endocervical cells. When my doctor called me about it, he told me he wasn't really worried and that false positives are common. He also reminded me that my cervix looked healthy. He referred me for a colposcopy. 

 

July 2nd, I went for the colposcopy, and the gyno told me that she'd call me in 4 weeks for the results, but said it was probably HPV and recommended the vaccine.

 

August 10th I went back for my results and they told me I had precancerous cells and that they would be able to remove them with a LEEP and that I'd have to come back every 6 months for another colposcopy for the next 2 years. Once the procedure was done, she told me she'd see me in 6 months and had me make my appointment for it.

 

4 weeks later, I get a call back saying I needed to come in for my LEEP results and was given a next day appointment; I immediately felt something was wrong. I went in and the doctor told me "you have a bit of cancer and I need to refer you to an oncologist". I asked her how they usually procede, and she told me that usually the treatment is hysterectomy once the family is completed. When I asked about having kids, she told me "if you were my daughter, I'd tell you to have kids right away". 

 

She gave me a referral paper that says "LEEP - Microinvasion 0.9mm by 0.05mm. Margins not involved" with no other details. 

 

I immediately freaked out, not understanding how they could do a hysterectomy for such a tiny spot of cancer, especially if that piece of cancer was on tissue they removed, so I went to my GP and had him actually pull my medical file with all tests results to see if he had more details than the paper the other gyno gave me. He was able to find the more detailed results from the lab, which said "High-grade squamous intraepithelial lesion, glands affected, deep not affected" and then the same "0.9mm by 0.05mm with margins not involved" as the other papers. He says that he doesn't understand why one paper says HSIL and the other paper says microinvasion, coming from the same lab source on the same date, since HSIL is precancer, not cancer. He suggested I just wait until I see the oncologist on October 6th but I'm super impatient.

 

I don't know what to think anymore, when the secretary from the oncologist called me, she was going on about how I'm gonna have a team of 3 doctors and that they'll take care of me, and this actually freaked me out even more because it felt really hardcore, as if they were going to break some really had news. The oncologists office is at the same location as the lab where my LEEP had been sent to, so Im sure they saw both papers and checked to confirm.

 

Let's say the margins were clear, does that generally mean they got rid of it and just need to do another colposcopy to check for residue? Im only 26 and don't have kids yet, so I'm really upset that they're mentioning hysterectomy, especially for a tumour that's apparently smaller than the piece of tissue they removed.

 

Please help me understand! TIA!

2

HI Angela I'm sure someone more knowledgeable on the medical terminology will come along soon but your story sounds similar to mine so I just wanted to offer some reassurance.

I was called into the colposcopy clinic in January after having an abnormal smear test.  The Dr performed a LLETZ but told me everything looked healthy and she didn't forsee anything more sinister. Shortly after an emergency appt to come in for my results! They'd found 2mm squamous cancerous cells in the removed tissue. I was referred for an MRI scan to check it hadn't spread and told to expect surgery at the very least.

MRI scan was all clear so I was given the option of a cone biopsy or hysterectomy. We already have a little boy, but had been planning on trying for another this year so I opted for the cone.  I had this in April.  It was under general anaesthetic and discomfort was minimal.  The tissue was sent off for analysis and confirmed that there was no cancer present. It had all been removed during the initial LLETZ.  I also felt that a hysterectomy was extreme given the cancer was so small but the Dr told me 'you don't mess about with cancer'. I guess if you don't have a cervix you can't get cervical cancer!  Once we've 'completed our family' I'll be having a hysterectomy.

I just wanted to reassure you that it's possible they've removed it all already - my oncology nurse definitely did not offer me any hope in this respect! I hope this helps.  Everyone says it, but the waiting really is the worst part. xx

3

Hi there, sorry you're going through this and I understand it can get confusing and overbearing.

I'm also 26 with no children. I'm actually booked in for radical hysterectomy tomorrow. But don't let this scare you! Hysterectomy isn't the only surgical solution. If the cancer is that small that they were able to remove it with LEEP and clear margins you should just need monitoring - if unclear further investigations carried out e.g. MRI, EUA etc 

Sometimes a cone biopsy will remove the cancer or even a trachelectomy - where they just remove the cervix and keep your fertility intact! 

Unfortunately for me my tumour was too big, although only 3.5cm, for the doctor to confidently do the trachelectomy so there is still hope if you do have to have more treatment. 

I hope this is the end of the journey for us both and the next check ups confirm that! 

4

Hello,

Sorry to hear about your confusing news. Have they mentioned a trachelectomy to you at all? This would be removing the cervix but keeping the ability for you to carry a child. Even though the chances of becoming pregnant are smaller once you have a trach I have read some great success stories on here from people after they have had this surgery. I was 26 when I was diagnosed and I totally understand the worry and confusion. You go from no knowing a whole lot about cc to researching everything! Please try to stay away from google, it was one of the first bits of advice I was given on here and I think it did help. 

The three people they are referring to are probably the MDT multi disciplinary team - it will be made up of perhaps someone with gynae expertise, and oncologist etc. 

I don't want to offer predictions but perhaps they may offer a cone biopsy where they remove a larger amount under GA, that is what I had before my trachelectomy.

Sending hugs x

5

Hi again guys, and thank you for your responses. Sorry for the delay!

 

So I had my first oncologist appointment today, and apparently the margins werent clear like the first doctor told me. They said that the part that was 0.5mm was at the edge of the tissue sample. The doctor agreed that a hysterectomy and even a trachelectomy is a bit extreme to be doing as the first treatment attempt, so I will be going in for a cone biopsy in 4 to 6 weeks. I'm really hoping this will be enough. I really want to avoid the trach because Id rather not have to worry about miscarriages, preterm labour and potentially bedrest which would cost me my job since I don't have disability leave, so I'd have to go on unemployment insurance which is only 50% salary and limited time.

 

I'ma bit freaked out because the first doctor told me to get on with having kids (same one that told me margins were clear) and then my GP (and the internet) told me that I could have a cone biopsy done while pregnant and that they just wait until you're in the 2nd trimester but this one says it's a bad idea because it makes it harder so they might ask me to terminate if I am pregnant. He gave me the paperwork for blood tests, but obviously Im due for a period before then (probably 2 by then), so kind of pointless. If I am, I'll probably refuse an abortion and risk the miscarriage since it's either the same result as an abortion or a baby. 

Basically, I gotta wait another month or so for the cone, and then whatever time it takes for results until I have a more definitive diagnosis. They know that one side of it is 0.9mm, they just don't know how big the 0.5mm side actually is and I'm hoping that one side being  so small  a is a good sign for the other. 

Any advice or reassurence would be greatly appreciated!

6

Hi mistell, 

When you had your cone biopsy, did you have clear margins? What was the reason they suggested the trachelectomy?

7

Hi SaCoCi, I'm really sorry to hear about needing a hysterectomy. I hope it goes well! How was your tumour diagnosed? 

8

Hi elgreenery,

I'm really hoping that's how mine will go about. I haven't had a single symptom of cancer. No pain, no bleeding, even after the colposcopy and LLETZ, I didn't even spot! 

I like to think I'm invincible, and I'm not worried about dying, I just really want babies.

9

I'm glad you've been given the option of a cone biopsy at this stage! 

In terms of size it was identified from the MRI, but my GP knew something was wrong when she was doing my smear. Because of the referral system I actually got my cancer diagnosis before I got my smear results. 

10

Hello

Yes, the margins weren't clear so that ia why I had to get the trach. I took a but longer to recover as mine was done via abdominal incision whereas lots of other ladies on here have had keyhole/robotic. I took about 6 weeks to recover. Wishing you best of luck x