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Adenocarcinoma-in-situ - Australia Adenocarcinoma-in-situ - Australia

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  #1  
Unread 12-09-2008, 03:21 AM
Adenocarcinoma-in-situ - Australia

Hi all,
Wanted to share my story so far.

I had my 2nd child, a boy, in April. I went for his six week check up and my GP surprised me with a pap smear. The results from that showed abnormalities, but it could have been preg hormones still around so we scheduled a repeat smear for three months later.

2nd smear had the same results, so I was referred to a specialist gyno. I saw him a week later, and he did a colposcopy. The results from that came back with CIN 1 of the glandular cells, so he wanted to do a LLETZ to cut them out.

I couldn't book in for the LLETZ til about 2 1/2 months later (November 6th) and it seemed like all was well. My recovery was painless. A week later, and he rang with my results which were not good and he seemed quite worried. Unfortunately he was unable to discuss a lot over the phone, but he mentioned a Hysterectomy. When I saw him a week later (I had to go away for a week for work) he said that I had Adenocarcinoma-in-situ and normally a Hysterectomy would be recommended given it was all over the margins. He said he was shocked at the results. However, he sent me off to a Gyn-Oncologist for a second opinion.

My Gyn-Oncologist was great, and he also suggested a Hysterectomy, but given that I was so unsure, he then suggested we go the more conservative route, and do a cone biopsy but to quite a deep degree, so he wanted to cut out to a depth of at least 25mm.

I had the cone biopsy done today with my original specialist, and it has been done to a depth of almost 30mm, so I am quite sure they will get some good pathology from that. I am in not too much pain, unless I am sitting up straight with lots of pressure down there, but have been taking panadol just to take the edge off. I wasn't advised to not lift or anything like that, but I really don't feel that bad so my kiddies have been getting lots of cuddles!

I see my doctor again in a weeks time, but he may have the results by this Friday or next monday (It is tuesday night in Aust right now!) I'm trying very hard to be positive and confident, but at the same time I have, from the very start, from that very first abnormal pap smear, had this feeling that a Hysterectomy would be done. I have no idea why I would think that so early on, especially when I had NO idea about any of the medical terminology that I do now, but it has just been this bizarre gut feeling.

I have two children, a daughter who will be 3 in Feb, and a son who is 8 months old. We always said we'd have three, and so I do feel very upset at the thought of a Hysterectomy. It is just so final. And it is taking away from our decision to have a third or not, because then it is not for us to decide, it will just not be happening.

I have been okay the last week, knowing that this cone biopsy has been done will make the decision process for a Hysterectomy much easier. Doesn't mean I like it, just means that I can say "yes" knowing that we've tried the conservative route.

Then again what if they find more and I need my ovaries removed as well? That is a thought that really completely blows my mind.

Or what if they think it's okay and I just need regular pap smears, but then I always have that thought in my head that those cells are growing and changing again? What is better to do, remove the uterus and cervix so I don't get those thoughts?

God, a million thoughts in my mind, but at least I have a great place to put them.

I really love this forum, and have received an amazing amount of information and support from here just from reading everyones stories and questions and answers. it is a fabulous resource.

Thanks for reading!
Maiestro
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  #2  
Unread 12-09-2008, 11:57 AM
Adenocarcinoma-in-situ - Australia

Maiestro
I am sorry that you are facing all these things at this time. I really can't help you with your questions, though I am sure that just by writing them down here has been helpful. I would suggest writing down your questions for your doctors. Waiting for the results is very hard. We want to know NOW. Once you get the results from this last procedure, you will probably have a clearer picture of the next step.

Go snuggle with your two precious children and try to focus on them and your husband until you get the results.

and ers
Jane
  #3  
Unread 12-09-2008, 01:48 PM
Adenocarcinoma-in-situ - Australia

Hey, sweetie!

I'm so very sorry you've found yourself in this place, but I am glad you found us!

You sound like a very reasoned lady even in the face of all this uncertainty. I'm so glad you've seen a gyn/onc as well. We like to "hit people over the head" with that around here. You definitely want the best where your health is concerned.

Hopefully, your margins will be clear this time, but you're right about the lingering questions. I was a IAI at diagnosis (yes, I was religious with my paps!), so my treatment was a radical hysterectomy, and we took the ovaries as well (I had a history of melanoma). It wasn't a walk in the park, mind you, but if necessary, YOU CAN DO IT! Just take one step at a time.

In my mind, doing whatever gives you the best chance at being here for as long as possible is the way to go. Adenocarcinoma behaves differently than squamous cell (which is the majority of CC types), so the general consensus seems to be for a more "aggressive" treatment (that's how it was three years ago, anyway). It has been described as "sneaky" and can "hide in the glandular cells, " etc. I'm absolutely not trying to scare you. You've caught things early, so you are in excellent shape on that front. Do some reasearch and talk to your doctors and your dear hubby.

Whatever happens, remember, we are more than the sum of our parts. You'll still be a beautiful woman, wife and mother, regardless. The most important thing is that you'll still be here.

Keep us posted and remember, we're here 24/7!


monami
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  #4  
Unread 12-09-2008, 06:11 PM
Adenocarcinoma-in-situ - Australia

Hi Maiestro! I am glad you are feeling so well and that your doctor is acting proactively with this. That is what you want!

As Monami said, adenocarcinoma acts differently than squamous cell cancer. Squamous cell cancer (or precancer) grows slowly, and tends to grow outward from a lesion. It is fairly easy to detect because the squamous cells are on the exocervix (think of it as the frosting on a donut) and a little into the cervical canal (inside the donut hole a little ways). Glandular/columnar cell cancer/precancer is more difficult to find. The glandular/columnar cells are inside the cervical canal (where the frosting can't reach on the donut), so it can't be seen or scraped with a pap or seen with a colpo. The only nonsurgical way to sample the cells in the cervical canal are with an endocervical curettage (ECC). When a LEEP/LLETZ or cold knife cone biopsy are taken (surgically removing tissue) it samples the cervical canal where the glandular/columnar cells exist. Columnar/glandular dysplasia grows more rapidly than squamous dysplasia. Columnar/glandular cells also "skip" over healthy cells to start another lesion elsewhere. Just because the doctor gets all of one glandular/columnar lesion doesn't mean there aren't others elsewhere. I think of it as a ping-pong ball covered in pain bouncing around in the cervix. THIS is why I call it an evil and sneaky cancer.

While a hysterectomy is generally the treatment of choice for adenocarcinoma, there is a possibility that the doctor could perform a trachelectomy. This surgery removes JUST the cervix. It allows a woman a chance to have another child, but I don't know about success rates with it. It is something you could definately ask your doctor about.

Please remember that cervical cancer (if found early and treated early) is very treatable.

I was diagnosed with adenocarcinoma Ia1 back in April. In June, I had an LAVH to remove just the cervix and uterus. I go for my 6 month post-op appointment next week. I expect to STILL get good paps (I've NEVER had a bad on in the last 25 years - and I went annually).

Write back. We'll do our best to answer your questions! ((((hugs)))
  #5  
Unread 12-10-2008, 02:01 AM
Adenocarcinoma-in-situ - Australia

Maiestro,
I am so glad you found us and that you and your doctors are being so pro-active. It appears the disease was found early and this of course is very good. You immediately struck me as being very level headed and reasoned even as you await the results and this will help you as you fight the beast. Keep hugging those little ones and leaning on your DH during these difficult days; may you find good support close to you.
You've received some excellent advice and info here and particularly may want to discuss whether a trachelectomy might be feasible in your case.
Please keep us updated. You will be in my prayers.
  #6  
Unread 12-10-2008, 02:51 AM
Adenocarcinoma-in-situ - Australia

Thanks so much everyone. I guess I am pretty level headed and reasoned but I think it's just that I've had a lot of time to think, and to research, and to have my questions answered so far. It was only a few weeks ago when I was new to it all, that I was a mess - but thats because everything was so unknown, and I hate the unknown.

I was talking to a friend today who had CIN 3 of the squamous cells cut out 18 months ago and they have returned, she just wants a hysterectomy to avoid it ever coming back again. It is so good to have someone close to me who is sort of going through the similar thing.

Now - if only I can get my trauma insurance to pay up. They will pay for carcinoma-in-situ of the breast if the breast has to be removed to avoid it spreading, yet they won't do the same thing for the cervix, even if you have a hysterectomy. I am still going to claim though, and test their underwriting. Only one way to find out for sure.

I shall keep you all updated, and I am truly thankful for everyones support.
  #7  
Unread 12-10-2008, 07:04 PM
Now I'm really nervous

Hi, I am recovering from a radical hysterectomy (11/20/08). I have cervical cancer Stage 1B - adenocarcinoma. The doctor gave me very good odds, is it not so? I hate sneaky cells. The doctor felt that radiation is not necessary. He said that if there are recurrences it will typically be within two years. But everything is gone now except 3/4 of my vagina. Do you mean that adenocarcinoma can just set up shop anywhere? And when does one ever get to feel safe again? I've recently become friends with a neighbor who underwent radical hysterectomy for the exact same thing. So far, she is doing well two years later but just crumples with fear at the least pain thinking the cancer has come back. To the lady who posted from Australia: I would definitely recommend taking it all out and lessening your chance of recurrence. As soon as I found out I had cancer I had my hospital bag packed, but, alas, I had to wait over a month. Bella Rose
  #8  
Unread 12-10-2008, 08:56 PM
Adenocarcinoma-in-situ - Australia

  Quote:
Originally Posted by Bella Rose
Do you mean that adenocarcinoma can just set up shop anywhere? And when does one ever get to feel safe again?
According to my gyn/onc, the answer is yes. You can have a distal recurrence. This is why he orders an annual whole body PET scan for his patients. BUT, the vast majority of recurrences are "local," thus the need for the follow up paps, etc. As far as feeling "safe" again, the further out from treatment, the less likely a recurrence becomes. As you said, most recurrences happen within the first two years, although there have been cases many years later.

Right now, it seems impossible, but you will "adjust" to your new reality. You will reach the point where the fear of a recurrence isn't the first thing that pops into your head anytime you have an odd pain, etc. Just remember to always be vigilant with your follow-ups and never let your guard down.


monami
  #9  
Unread 12-11-2008, 09:50 PM
Adenocarcinoma-in-situ - Australia

Well I have my results from the Cone Biopsy and they are pretty fantastic, but now I have to figure out what to do.

The conclusion to the results is that there is no evidence of AIS nor invasive tumour. But my specialist still wants to do a Hysterectomy due to the glandular cells.

Im seeing him Tuesday, and I think in between now and then I'll phone the gyn/onc that I saw as well. And think of lots of questions to ask and find out what to do.
  #10  
Unread 12-12-2008, 05:37 AM
Adenocarcinoma-in-situ - Australia

Monami and Maistro, I'm definitely going to be vigilant, and after my recovery I intend to become healthier than I have ever been. Good luck, Maistro, on whatever your decision. Bella Rose
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