Newly diagnosed at initial 1a1 and really scared,the rollercoaster of emotions has really got to me as I’m sure you can relate.
The more I research, the more I seem to read that hysterectomy is the most logical course of treatment. I have a beautiful daughter, and always wanted another child, but I’m 29 and single and can’t see that happening soon.
I understand of course that hysterectomy removes the ability to conceive, but I’m kind of looking for opinions as to whether or not it’s worth it. My main priority is being okay for my daughter…
I’m due a phone call from a consultant Thursday after their MDT meeting, so any questions you’d suggest I ask would also be useful.
Has anyone else made this decision and can share their though process? Sorry for the long post xx
I have been diagnosed as 1a1. in my case I had a leep in june for what it was supposed to be CIN2 removal. Then the pathologist identified 1 mm of SCC that was completely removed (clear margin
ins). However the tissue as a whole has a focal positive margin on the endocervical side. however the ECC after the leep is negative. I will have an appointment with the OB next Wednesday, and we will discuss next steps. he has given me the option of hysterctomy or second leep. my MRI done on Monday came negative. is your case similar to mine? I am 38.
Hi Istage, sorry you’re going through this too, our journeys sound pretty similar.
My consultant rang me today and said that there were clear margins, but he would like me to have a hysterectomy. He did say if I wanted to wait I could have another lletz (not really sure why if margins are clear) and then be monitored closely.
I’m meeting him next week, so will be taking a list of questions. I had wanted another child, but I’ve never in my life been as scared as I have been over the past two weeks
Hi @HannahBlonde
Clear margins!thats great news!!!
Can you share what your dr will tell you on your next appointment? I can do it as well.
In fact, I have 4 appointments with 4 different drs, starting with the first one on Tuesday (he is the head of oncology of a very well hospital where I live), Wednesday with my dr (the one that did the leep), and second week of September with 2 professors that are doctors as well.
My level of anxiety is really high, I cannot think about anything else.
My diagnosis came as a total and horrible surprise as none in a million years I would have thought going through this. Because I made my annual reports, drs never educated me about HPV, I was not educated as well about the topic. I am feeling culprit of of not having taken care of my health and been my pwn advocate. I was first diagnosed with HPV16 in 2015! And the dr never explained me the consequences of this virus! In 2017 I tested negative of hpv however, and this is why I thought, ok this is gone.
May I ask you what was the size of your micro invasive carcinoma? In my case, it were found 2 focis or nest of micro invasive squamous cell carcinoma, together they do not measure more than 1mm horizontally, and no more than 1mm depth. Both nests were located on the same block of tissue at 7 o clock. The margins of the carcinoma is clean however the tissue as a whole has a focal margin with CIN2. I will ask the drs how someone could have Cin2 and simultanesouly cancer as I thought the natural further step before cancer would be CIN3.
I totally get about the anxiety, I’ve got an appointment with my Dr on Monday to discuss that.
Of course I’ll share what happens, I don’t even know what type of cancer they found, let alone the size so I’m feeling a little clueless about it all at the moment.
Keep me updated with how it goes, and feel free to DM me…we can tackle this together
My Dr was lovely. He explained everything and took his time, really understood my anxieties.
After a fairly lengthy talk, I’ve decided to opt for a full hysterectomy which he is going to schedule for October. He did offer me a third lletz (under general if I wanted) but because of how much of my cervix has already been removed if cell changes/cancer came back hysterectomy would be my only option. I’ve decided to take control and skip the monitoring and anxious waiting.
Hi @HannahBlonde I send you tons of positive vives for your surgery in October.
In my case, I am contemplating a second opinion. The dr that did the Leep and found the carcinoma has directed me to hysterectomy right away. The second dr has rechecked the MRI, has made new blood text and tumoral biomakers, all is fine with those.
@HannahBlonde he has re - checked the tissue from the leep and he has a more conservative approach. He recommends a second Cone/leep because there is still enough cervix (3cm).
On another note, I have been tested for HPV, and just after 1 and a half month of my leep I am negative!!! So this negative pcr gives me some hopes. I will go to a third and fourth dr first week of September and then based on everrything gathered I will take a final decision.
Also stage 1A1 (adenocarcinoma with CGIN) and now 4.5wks post-hysterectomy. I had an initial LLETZ that showed the cancer, a 2nd because they knew there was more CGIN and they wanted to check whether clear of more cancer (it was) so opted for a simple hysterectomy. I’m now 37, have 2 kids (2.5yrs and 7m) and decided I needed to be as healthy as possible for them rather than risk my health for another baby. I did retain my ovaries so if I’m desperate, I could consider a surrogate. My baby currently wakes every 90 minutes so I’m pretty sure I’m done with more babies….she’s slowly killing me
I’m in the UK, just had a radical full hysterectomy (50yrs - 2 Beautiful daughters) not wanted anymore children, and I awaiting my results as the MDT team are meeting today, I have no idea of the next steps, I’ve waited 2 months to get this hysterectomy or a plan, they’d lost my blocks n slides and haven’t even told me what step I was at! I’m just still in the dark as to what’s happened! Fingers crossed that I receive any acknowledgment of what going on!
So the update is, I’m feeling great after post op 2 weeks, went out for a walk today with my daughter, feeling good (apart from my hip, as I’m awaiting a new left hip also - constantly in pain with that! Grrrr) I have been told that I have Lynch syndrome (didn’t have the foggiest what that was) and I’m having chemotherapy for it! I have an appointment on 20th October with my oncologist, they will then let me know when my chemo starts, which would probably be 2 weeks after my appointment. Just reading up regarding chemo and have maybe been advised about a cold cap, which I think I’m going to leave and not have one, only because if it’s going to fall out (not saying it is at all) I want a fresh start to my new hair - getting a lot of greys now and can’t be bothered to keep dying it xx People keep asking me regarding chemo how I feel, but I’m not thinking to much into it and what will be will be. I’m quite a positive person so I hope you are too - good luck with your surgery xx
Hi there!
sorry as I was absent on the forum, I needed some time off.
good news is that I had the second leep done 21.09.2022, and the results came totally clear! nothing was found and the ECC performed after the Leep was clear as well.
I have my next control next month, so I pray to have a normal Pap and again another PCR with Hpv negative. if that would be the case, I would feel so much relieved and secure to think that this is almost over! and I will allow myself to plan a pregnancy in September next year.
what about you? how are you?
So now I’m having chemotherapy after 8 weeks post op - personally it’s shit! I have aching joints - gut reflux that is so painful tho I was having a heart attack! So have 18 weeks off 6 treatments every 3 weeks- then I have 3 telephone appointments with the genetics regarding my Lynch Syndrome! After chemo I’m having radiotherapy- then maybe I can have my new hip that I should have had last year!
let me know what you decide…I’m still feeling in limbo!
