Had some very heavy abnormal bleeding in may 2022. Waiting in ER for 8 hours and not seen by MD. Left and followed up with family doctor. Asked for gyne referral and was declined. She ordered, ultrasound and bloodwork, Pap. Confirmed uterine fibroids. Started on transexamic acid and told I was in perimenopause.
Nov 2022 receive a letter in the mail from cervical screening program that I have abnormal pap cells that need follow up. Called family MD, who says she missed results of abnormal pap for 3 weeks. WTF! Found to have adenocarcinoma in situ. Was told not to worry it’s only in situ, not cancer. Was now urgently referred to colposcopy and now family MD was okay to refer me to gynaecologist. (Oh thanks for listening to me back in may).
Early December go for colposcopy, sees lesion, and confirms likely AIS. Did biopsies of lesion, ECC and uterine biopsy.
Biopsy results come back as adenocarcinoma from ECC and possible AIS or invasive adeno of lesion. Given diagnosis two days before Xmas and told next steps are gynecology oncology… couldn’t answer anything about staging and next steps ? Cone biopsy. I had come to terms with hysterectomy when it was just AIS. But now from reading posts, may not be an option based on staging.
Robbed of xmas with the stress of all of this but tried to make things normal for my two little boys.
Tried calling gyne onc today, my referral has not yet been received so can’t proceed booking apt until it’s been received. Feeling incredibly let down by medical system with delay after delay. In canada for reference.
Thoughts on next steps? Cone biopsy? CT? MRI? For staging? Super stressed, anxious and , not sleeping = deadly combo.
Hi Nat_can, so sorry to hear about your situation! Must be hard to spend days in the unknown with regards to diagnosis, treatment options and so on. I totally symphatize the timing, too! I also got some worrying news just before Christmas, and it just felt like it was not the time. You posted several days ago, I was wondering if anything has changed by now in your situation? News about your future treatment?
If not, and maybe in any case, there there was a thread which I found useful with the explanation of different treatment combinations: the thread is called: New diagnosis of adenocarcinoma in situ questions (I’m not able to include links here replying to you).
I myself am in some borderline situation between AIS and the actual adenocarcinoma. In my case, they will perform a hysterectomy which, I guess, will include at least one sentinel lymph node taken out and checked. And before locking the operation plan, a PET/CT scan to inform the doctors better.
I totally get the stress and anxiety and everything. I’m just trying to regain my strength inbetween all new occasions of news and waiting and so on. I don’t have any magical words to you, but we just take it challenge by challenge, and taking care of sleeping is also very very crucial. All the best to you, and let us know how it goes!
Hi- sorry to hear that your journey has been so difficult
I had a diagnosis of AIS and likely early invasive adenocarcinoma in October, since then have had 2 LLETZ (first was without clear margins), MRI and CT, and got confirmation of staging at 1a1 in early December. We have an appointment with the consultant on Monday 9th to discuss treatment- based on previous appointments conversations this is likely to be simple hysterectomy.
The waiting is the hardest part, but until you know for sure what the diagnosis and staging are it’s impossible to know what treatment you will be recommended.
Hope the wait for answers is not too long now xx
Wow there are not a few parallels between our experiences!
I had so many tests come back with zero malignancy and in situ my head had pretty much spun all the way around by the time I got my 1b3 staging. My tumor is a little too big to start with surgery but thankfully no lymph node spread which is a major determination for prognosis. I’m sorry you are facing so many delays, what I decided to do was become my own advocate and not worry about being a pest or annoying and just stay on top of all the schedulers. The squeaky wheel gets the grease and you don’t want to be so polite that you are left wondering next year if earlier treatment would have made a difference. I believe I will end up cancer free and stay cancer free, but the damage to my healthy tissues due to chemo radiation won’t ever go away. This C journey requires so much strength, it’s a damn good thing we are women! You can do this (and early stage 1 is very very treatable)
Thanks to everyone that responded with your support and acknowledgement that waiting is the hardest part. Your mind truly plays tricks and goes to dark/worse case scenarios.
Lovewinz, you are very right. We have to be the squeaky wheel and our own advocates. I am tired of waiting so I have been polite but I have no problem calling for updates, seeing if I can be added to cancellation lists, etc to see if I can be seen/scanned sooner. It is our health and there is no harm in trying to push things forward.
I was originally scheduled to see gyne oncologist for the end of Jan. I was fortunate enough to have a friend that helped me get in to see someone last week.
Gyne onc thinks I’m early stage, likely IB and is suggesting a radical hysterectomy (keeping ovaries since I’m early 40’s). Was sad to learn that I will need to have a new vertical scar (can’t go through my C-section scars).
I had CT this week and MRI scheduled for early Feb. Surgery likely March unless she or her colleagues can get an earlier OR time.
Any updates with dates for your scans Stepper? Cozza how did your apt go earlier this week?
it’s good to hear your news. Although the timelines you are telling about do not seem easy to bare mentally. When are you getting your scan results? I think you are completely doing the right thing to try to speed things up and I do hope that you get earlier appointments. I understand the worry about the scar as well, there are so many things coming with these diagnoses that we cannot choose but just to accept on the “side”. I was initially so shocked and sad about the thought to have scarring on my belly, because the diagnosis has taken away my wish to become a mother, so somehow it was symbolically so painful that instead of a scar showing a baby had come out of me I had to live with scarring for having had my uterus taken out empty.
You asked me about the scan results. Well, I was operated this week: Robotic surgery: uterus, fallopian tubes and two sentinel lymph nodes removed (so I guess that’s simple hysterectomy plus 2 lymph nodes if I get the terminology right?). After the operation, the doctor told me the lymph nodes were not immediately analyzed as they still suspect it’s only AIS and therefore they were sure they wanted the uterus out anyway. (They would have asked the pathologist to analyze the sample during the operation only if that result would had affected the course of the operation. Previously my PET/CT scan was interpreted as clear, I was so very relieved for that.)
I’m really glad I got the robotic surgery as the recovery has been quick and seems like the robot did a precise job in my “insides”. I get pains but then they go away with the meds for a little while, and resting helps, too. So I feel changes throughout the day/night in my condition. I have been relying on sleeping pills for most of the nights for the past months, now after the operation I experimented a night without, and the result is just as earlier - I do fall asleep but wake up around 2-3 a.m., this has been going on for months now. But now after surgery the thoughts during these waking hours are a bit less of anxiety and more realistic or even a tiny bit relieved. So I feel relieved although still a little in pain and just re-learning what my body can do at the moment.
Good to hear all the updates- NatCan I hope you get your scan results through soon, honestly waiting is the hardest
I now have my surgery date- 2nd Feb for laparoscopic hysterectomy and have chosen to have ovaries out too. I was told there was a 2% risk of ovarian metastasis, and given that I am 42 and have had my family I felt that the risks of early menopause could be managed with HRT and I would prefer that to leaving them in
I think what I am learning is that none of this is straightforward and we all have to make individual choices about what is right for us. Hard when your head is spinning with it all though!
Hi Nat_can, how are you? May I ask have you got any news and how are you coping overall?
I have pathology results from my operation and I had adenocarcinoma IB1 in the end, not the precancer adenocarcinoma in situ. Apparently it is difficult to diagnose from curettage/scraping of the cervix, and that’s why before my hysterectomy the pathologists were not sure what it would be. My tumor was up up in the cervix so the LETZ had not removed the actual invasive cancer and that’s probably why the pathologists had first said AIS. Luckily health wise, my lymph nodes and PET/CT scan were clear and I was told the operation would suffice as treatment. Seemed like a close call though, my consultant had to discuss the treatment plan again in a MDT meeting and she said had they known for sure it was going to be invasive, they would have performed a slightly larger operation on me.
I have had my CT (Jan 10) and MRI (Feb 6). MRI showed no spread, no lymph involvement but couldn’t actually see the tumor (although my doctor can visually see <1cm lesion. I still have a tentative surgery date of March 10 for radical hysterectomy. Still feeling nervous and anxious about the surgery but looking forward to moving ahead. I guess depending on pathology, I may require radiation. Fingers crossed surgery gets it all and there is no lymph nodes involved. Started seeing a social worker and it’s helped process some of my feelings etc.
I am still working but wondering if I should take some time off before surgery to prepare emotionally and practically (do all the running around now before I will be unable to).
How are you feeling post op? Have your stress levels returned to normal? How frequent will you be monitored now? I guess that’s the tricky thing about AIS and why gold standard treatment is hysterectomy because it often can be hidden and hard to find and can be in multiple places.
Thanks for your message, I’m glad to hear from you. Sounds like the scans are showing good signs. But the waiting is so hard, I’m sorry you still have some weeks left till the operation. The social worker contact sounds very smart and all the processing of feelings is important to do. I have also been seing a nurse and it has been helpful, although it hasn’t made it all shiny and go away - all of this has still been very tough.
I understand you are wondering if you should take off some time before surgery and if you feel like it and can do it, well it’s a great idea. Arranging the practicalities before the operation helps us afterwards and gives some sense of control which in other parts we are losing. Also if you’re able to take care of your physical condition before the operation it helps afterwards. If you’re interested, I was off work at an earlier stage before the operation. It was a point where I couldn’t manage with all the feelings and I felt I had to become the project manager for my illness. I needed to prioritize the care not work. (My own hospital wasn’t knowledgeable/specialized enough for some questions in my treatment path related to fertility, so I was referred to another hospital, and I could see how they didn’t communicate well and I felt I had to push them and act as a messenger to get my treatment as soon as possible.)
I have recovered well physically. Did have an infection but the antibiotics worked luckily. I have indeed started to sleep better again, I think the final pathology results and decision that treatment is finished was the key to the stress levels dropping a bit. I will have my post op check soon and I think whether HPV will be positive or negative will define the monitoring interval.
