AdenoCa: Long AIS journey, ending with a hysterectomy

Hi girls,

My story is quite lengthy, so I'll sum it up over a timeline:

March 2010: Abnormal pap smear result "possible high grade squamous epithelial cells", gyno referral.
April 2010: Colposcopy, all-clear results, ultrasound all-clear results, yet 2nd pap smear result "possible high grade squamous epithelial cells".
July 2010: LLETZ biopsy under general, AIS confirmed, close to margins.
Jan 2011: 2nd LLETZ biopsy under general, all-clear results.
Oct 2011: 3rd pap smear result all-clear.
June 2012: Follow-up colposcopy all-clear.

Despite the recent all-clear results I have been receiving post-LLETZ, I have been urged by 3 different practitioners (1 GP, 2 gyno) that I need to have a hysterectomy. They are concerned that, being that adenocarcinoma is an aggressive and often hard-to-detect type of cancer, a recurrence may not be picked up. Initially I was against the idea, I did not like the idea of major surgery and losing my "girlie bits", I felt everyone was overreacting and trying to get me to take the "easy way out". However, after further consultation, I have gradually succumbed to the idea, realising that I don't really have any other choice if I want to live the rest of my life cancer-free.

I am very thankful to have 2 young children, a boy and a girl, which I had during my 20's. It saddens me that any future children will not be an option (we were urged to complete our family NOW, and honestly we are not ready to have another child just yet, so that pretty much seals the deal for us) so I am learning to be thankful for what we already have. I know so many women out there are not as lucky to be able to have children before dealing with something like this.

I am not currently booked in for my operation, it has been left in my hands to organise. As I am the sole income earner for our family, with practically no savings, I am concerned about how much time I will have to have off of work to recover post-surgery, which is why I have decided to wait until an inheritance cheque arrives (apparently due over the next couple of weeks) before booking it. So once it arrives, I will start the ball rolling by contacting the surgeon co-ordinator at the local hospital to sign consent forms.

I admit, the thought of this operation absolutely terrifies me. Other than the LLETZ biopsies (minor day surgery) the only major surgery I have ever had has been getting my tonsils out when I was a very young age. I've been told I can keep my ovaries, something I am very thankful for. I'm not sure on the method of approach yet (ie. vaginal, abdominal etc) but hope to find out once I contact the hospital.

Am gonna need a lot of support to get through this, especially from those who have already traveled this road. Very scared, especially of the after-effects. This journey has become very surreal to me, 2 years since it began and I am STILL trying to get my head around it all

I understand your hesitation.
How old are you?
I was 55 when I had my surgery a year and a half ago, and I am still feeling the residual effects of losing hormones when the surgeon removed my uterus and ovaries.

I am happy that you have your children.
I also had two children.
The doctor confirmed only pre-cancer (Complex atypical hyperplasia).
No cancer, but I didn't like the 30% chance that the CAH would change to adenocarcinoma. I allowed him to take my ovaries, too, because I was over 50.
The pathologist found a "borderline proliferating tumor" in my left ovary (two days after my surgery). They had taken a pathology report during my surgery, but I guess that pathologist did not detect the borderline tumor before they closed me up.
There were also fibroids and cysts around that ovary.

The doctor kind of asked me if he could go back in and test some lymph nodes. I told him "No," since I felt he already had his chance, and lost it.
I also did some research on the tumor that was in my ovary.
Since it was truly borderline, the study from Johns Hopkins that I showed him said not to do anything. Just take a CA 125 every 6 months.

I wanted to try that, unless there was other evidence of cancer.

I understand your caution, but the doctors don't know exactly what they will find until they go in and take your uterus.

I wish I had been as cautious as you, but if I had, they would not have discovered my borderline ovarian tumor.
True, it had not "awakened," but you never know when it would have decided to "strike."
I did not want to "roll the dice" and it payed off a bit.

Given all of your recommendations, and what you have, don't wait too long.
Have you consulted with a GYN/oncologist/surgeon?

Good Luck.

lilmissmau5

I am sorry to hear you are facing surgery and that you have been diagnosed with AIS. Surreal is a good word for the cancer journey.

We are here for you.

Yes, unfortunlately, cervical adenocarcinoma can be a tricky one to manage. And, it can be missed, even with close follow-up which is why a more aggressive approach is often recommended. Has your gyn recommended a gyn/onc (gynecological oncologist) consult? They are the experts for gyn cancer/pre-cancer, and we recommend consulting one, if possible.

Of course you're scared, sweetie. I'd never had major surgery prior to this, and I think I was more afraid of the actual procedure than the cancer itself, if that makes any sense. But, I made it as did many other ladies here. And, if we did, SO CAN YOU!

We're glad you found us!

Hey LilMissMau5!

I am 28 and facing pretty much exactly the same - except that after a year of bleeding (misdiagnosed as benign Cervical ectropion), I had my conization just 10 days ago - which came back as CIS III and AIS, so a "mixed lesion" - and I am not playing russian roulette, so I am determined to have my uterus removed.

I am also facing similar issues regarding work; I am currently studying, financed with scholarships for A grades - so if I have a sick note for many weeks, I'll fail the semester, which means failing my entire education for not being to afford it without any financial aids.

I will only discuss the hysterectomy itself in two weeks from now, but I will take the following approach:

1. Minimal-invasive (LAVH) approach first. Removal of uterus only. If uterus turns out to be diseased: Proceed with radicalness, remove ovaries... And, if needed, do the "big cut" and make sure to remove lymph nodes etc. properly.
But I really hope they'll just remove my uterus...

2. I heard that blood loss is a large issue with this surgery, and it is one of the major causes of fatigue. Women are often low in iron (due to menstruating and eating less meat, sometimes fully vegetarian diet), but iron is needed to build new blood - same as vitamin B12 and folic acid. After discussing that with my doctor, I want to "dope myself up" on all these supplements before and after surgery to provide for best recovery.

3. Also, I read that for chemotherapy fatigue, ADHD or narcolepsy medication (ritalin, amphetamin, etc.) is used as an off-label treatment. I absolutely NEED to be fit after three weeks - I am having the surgery in my semester holidays - so if I am still fatigued by then, I may consider the above an option.
Just as a disclaimer, the above medication can have severe side-effects and should always be discussed with a doctor before considering it!


Hope you'll be recovering quick and not be in any financial crisis after your surgery! And, most of all, I hope all goes well and you will be cured and well after your recovery period!

On the day you wrote this post, I was having my hysterectomny.

I have been blessed with one child, though always dreamed of another.
Why did I do it?

CIN 3. Not even adeno, just squamous. Adeno is a nasty thing, far nastier than the surgery.

Only YOU can decide if you are done having children. If you decide that YOU ARE, the surgery is not nearly as scary as our imaginations make it.

I am one week post op. I feel great. The first few days after surgery were painful, but I had meds and nurses.
Fighting adeno, should that be indeed what you have, would be much worse. Try not to make your decision out of fear. The hysterectomy is the second most common surgery performed on women.

HUGS!!!!!!! I know it 's scary, but in the end it's not half as bad as we imagined.