(0)
0 Items £0.00

Newly Diagnosed, feeling overwhelmed

2 posts / 0 new
Last post
Unicorn Rainbow
Newly Diagnosed, feeling overwhelmed

Hey everyone, so grateful to have found this forum! I've been going through a lot the last few months. Here's my story. I'm in the US so a few details might be different.

Back in December I started having some problems that were red flags that I needed to see a gyno. I came down with UTI-like symptoms, went to urgent care and they found WBCs in my urine but no bacteria. They told me this meant I did have an infection but somewhere else in my body. I was also having some pelvic pain.

I'm a grad student in a pretty intense program that sometimes requires traveling out of state for rotations, which is where I was at the time. Here in the US a lot of health insurance won't cover services outside your home state, so to make a long story short I didn't get in for an appointment with a gyno until February. She commented during the checkup that my cervix looked inflamed, and bled more than it should have after the Pap. A few days later the office calls me back to say my Pap was abnormal and schedule me for a colposcopy.

At this point I was completely terrified! I hadn't been to the gyno in a while and I was very very afraid that I had let a bad strain of HPV develop into cancer. My colposcopy w/biopsies was March 29 with a different provider who was extremely reassuring and said that based on what she saw down there I was likely at CIN II or III but didn't have cancer yet. She called me back a few days later to confirm a CIN III diagnosis and referred me to another doctor who would do a LEEP to remove the bad cells.

I had the LEEP on May 15 and felt tremendously relieved afterward. The pain I had been having was gone as soon as she cut the tissue off; I felt better immediately and had no problems afterwards other than some residual spotting/bleeding which they told me was to be expected. May 22 the doctor who performed the LEEP called me back with my lab results and this is where things get complicated.

The good news: The tissue they removed had clear margins on all sides.

The bad news: The doctor did find a small (less than 1mm) piece of actual cancer and is referring me to a specialist 2 hours away (the only one in my state, I live in a rural area).

The other good news: She said she examined all the blood vessels and lymphatic vessels in the tissue she cut off and found no traces of cancer anywhere. Maybe we truly did catch it in time?

At this point I'm what you could call an emotional wreck. My feelings have been all over the place, from fear of another surgery or even worse-case scenarios, to feeling like it's fine and the disease has been removed entirely, to feeling like I'll never have a healthy sex life again. I wish I didn't have to wait so long to get more answers as the uncertainty is making things a lot harder to deal with. Any advice, support, or similar experiences is appreciated. In the mean time I'll be reading on here instead of doing my homework. Thanks for listening!

Lotty9000

Hi

I’m so sorry you have had this result. Everyone on here understands your fears and frustration.

My story is slightly different but similar in a few ways. I had a routine smear in March, I have never missed a smear not have I ever had an abnormal smear. I had had no symptoms really although looking back I maybe had a month or so of an odd discharge which self resolved. So you can imagine my fear and panic when I got a letter 5-6 weeks later saying I needed a colposcopy. I attended my colposcopy on 1st May and had a LLETZ procedure in 2 areas, my gynecolgist felt that this would resolve the issues,that there was no need to send the samples as urgent and I could get a repeat smear in 6 months. Unfortunately this wasn’t the case, I got a call on the 8th May to say my gynaecologist wanted to see me about the results. In one of the samples there was CIN III,CGIN and Villoglandular adenocarcinoma (2.5mm x 5mm) no clear margins at the endocervical canal.

I have since had an MRI and CT scan and am awaiting it being discussed at the MDT (multidisciplinary team) to decide the best course of action. I believe this will be a hysterectomy, unsure of whether it will be radical or not, think that depends on the scan results. 

The waiting is the worst! I go through days of forgetting and then it hits me again. It’s like a nightmare. However for me I’m trying to carry on as normal, it helps me stop dwelling and over thinking things. This might not suit others but it helps me.

Good luck. This forum has been amazing in the short time I’ve been on.

C x

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

More Information

Cervical cancer