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    Old 07-19-2009, 06:24 PM   #1
    pkreno
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    diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes :)

    I've been going to the doctor for a few months because of problems with my bladder. The pap at the beginning showed mild changes supposedly. They did a cone biospy last Monday and she thought that day that the margins were clear and that I had some time before I'd have to have a hysterectomy. She called Thursday and said I have stage 1 adenocarcinoma including a tumor. She said I would have to have a radical hysterectomy within a couple of weeks and probably radiation as well. I just turned 33 and haven't found someone to have kids with so I'm so sad about that. I've researched online and know that I am very lucky it was caught as early as it was but still feel so overwhelmed at the thought of having cancer and losing all of my reproductive organs. I'm also reasearching HRT since I guess I will need to be on that as well. It's only been 3 days since I found out and I feel like I'm on a rollercoaster. Sometimes I feel like a prize fighter who's going to kick the crap out of the cancer and sometimes I can't stop crying. I know this is all normal but I just need to vent. It's hard to talk to loved ones because it makes them cry and freak out which makes me worse. Has anyone else been through this? Can you tell me how long it took you to be able to go back to work after the surgery or about HRT? I've reseached my oncologist and he is one of the best in the country which is good and the facility has state of the art treatments and a de vinci machine that they'll use to do the hysterectomy. I'm glad the surgery will be soon so I don't have too much time to dwell on it and be depressed. Thanks for letting me vent.

     
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    Old 07-19-2009, 10:25 PM   #2
    Pickle Eyes
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    I am so sorry to hear that you have had this diagnosis. I'm glad it has been caught early though.

    I was diagnosed with adenocarcinoma Ia1 last April (2008), had a total LAVH in June of 08, and went to my 1 year post-op appointment with my gyn/onc a few weeks ago. And . . . get this . . . she released me back to the care of my regular doc!

    There are a few things I don't quite understand from your post. You said you have a tumor. Is that the same thing as a lesion? In all of my tests (the ECC, two colposcopies and my hysterectomy) the doctor found 2 lesions. Both were less than 1mm across and less than 1mm deep. Do you know how large your tumor is?

    Additionally, have you actually met with your gyn/onc? Did he/she go over your pathology report and discuss your options? With adenocarcinoma, stage 1, and wishing to maintain your fertility, there is a chance you could have a trachelectomy (I think that is how you spell it). Have you looked into your surgical options? I don't understand why, with stage 1 AdCA, they are going to do a radical hyst!

    I can totally relate to what you are saying about not talking with family and friends about the cancer. I felt like our discussion were more about me allaying their fears than them comforting me. I already kind of expected things to be that way (because of what'd I'd read online) but was a little surprised when it actually happened that way. Also, I'd like to let you know that people can say the darndest things when they hear you have cancer. They'll tell you all kinds of stories that might have nothing on earth to do with you or your cancer. They may even completely change the subject. This is all normal. It has to do with their inability (or awkard way) to deal with what you've told them. I usually just knodded that I understood what they said. Sometimes when I walked away from one of those conversations I'd just shake my head (sometimes just in my mind) from what someone said.

    I don't have any funny stories for you, right now. I wanted to jump in and let you know that you are not alone. There are several of us on this board. (((((hugs)))))

    Have you actually scheduled you hyst yet? Do you have someone to take care of you after you are released from the hospital? How long did your doctor say you'd be in the hospital?

     
    Old 07-20-2009, 08:48 AM   #3
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    I have taken HRT since my emergency radical hysterectomy in Jan of 2007 due to grapefruit size ovarian Low malignant potential tumors. After surgery my gyn put on a HRT patch. I wore those for a month or so, then I switched to a pill. I have experienced no problems that I can think of due to taking HRT. So sorry you are having to go through this. Hugs, Trish

     
    Old 07-20-2009, 05:56 PM   #4
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Thank you so much for your replies ladies!! It helps so much to see others who have been though it. I'm glad you are doing so good pickles!!

    After the colcoscopy the gyn said there was a lesion and at that time said it was stage 0 and they could get it all with the cone biopsy. She said after the cone biopsy that there is a small tumor and it's stage 1a1 like yours. She cut a lot out which is why it's taking so long to recover I guess from the cold knife cone. She is the one who said I have to have a radical hysterectomy and probably radiation. I thought she said the they were going to do the surgery next Monday but the oncologists office today said that my consult would be next tuesday night. I was researching and wonder why I have to have a radical as well. I guess I'll find out the deal next Tuesday. yup, I've been spending a lot of time comforting everyone else I'm finding. Some of them cried more than me lol.thank for the info about the trachelectomy, I'll have to ask about that. I have a lot of people who can help me after the surgery. If my mother comes, I'm going to ask for the good drugs lol.

    The gyn said that with the da vinci thing you are usually out the next day. From what I've found online, it looks like it should only be a couple of weeks before I can go back to work which is good.

    How many pills a day do you have to take for the HRT?

    thank you for your kind works and your help.

     
    Old 07-20-2009, 09:28 PM   #5
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    So this was the gyn who said you'd need a radical hyst, not the gyn/onc? Gyns are not well versed in adenocarcinomas. Only about 30% of cervical cancer are adenocarcinomas, and most gyns just don't see that many. From what I've read, they tend to either not detect it or over react in what treatment is needed. The gyn/oncs deal with adenocarcinoma all the time. When I went to my 1 year follow up my gyn/onc said that she had seen 3 women with adenocarcinoma that day (and all cancers were caught early and all women were doing very well).

    I strongly suggest that you let the gyn/onc do your surgery, not the gyn. If, worst case scenario, things are worse than expected (and they usually are not), then you have an expert doing the surgery. He/she will know exactly what to do to remove all cancer at that time. Gyns and Gyn/oncs know how to do the surgery, gyn/oncs just know more about what to look for and how to handle complications if any should arise.

    I suggest you take a written list of questions to your appointment with the gyn/onc. Leave room to write answers. When I went to my first appointment, I took 2 copies of my questions, one for me and one for her. She looked it over before we started talking so she could hit all of the really important topics.

    I don't know where, but you can find what typical treatments are given for various stages of adenocarcinoma. I believe for Ia1 it is a total hyst (cervix and uterus), leaving all other organs if they are in good condition (like no prior ovarian problems, andomyosis/endometriosis, etc). But again, with stage Ia1, a trachelectomy is also an option. The problem may arise that no doctor in your area is trained in doing those. You might do some research to find out if any gyn/oncs in your area are qualified/trained, just so you know.

    And, one more thing. I was concerned about chemo, radiation, having to have lymph nodes taken. My doctor told me that stage Ia1 hasn't spread to the lymph nodes, so I kept all of mine. She also said that because Ia1 is so shallow that chemo and radiation were not (for me, at least) needed. I am very happy to say that I haven't had (and don't expect to have to have) either one.

    I hope you are doing well! (((hugs)))

     
    Old 07-21-2009, 01:28 AM   #6
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Im so glad to read you are in the hands of an expert medical team. A successful surgery and recovery is wished you--know that you can post and vent here all you want .A great caring group of Ga'ls on this board. Kt

     
    Old 07-21-2009, 08:16 AM   #7
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    How many pills a day do you have to take for the HRT?


    I take one pill per day.

     
    Old 07-21-2009, 12:47 PM   #8
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Dear PK --

    I've been away and haven't been keeping up with the board, but just saw your post. I will send a better response later, but here's my story: I was diagnosed with Stage 1a2/1b1 adenocarcinoma in January of this year. I had a radical trachelectomy, which saved my fertility. I did not need any radiation or chemo. I can still have children, and do not need any HRT. If you are Stage 1, and your tumor is less than 2cm and have no lymph node involvement, you should be an excellent candidate for a trach. I had my surgery with the aid of the Da Vinci robot as well. I only stayed in the hospital overnight, and was out of work for a total of a little more than three weeks before I returned to work part time. I am now almost five months post surgery, and am doing very, very well. Please feel free to PM me with any questions you may have. I know how you feel and what you are going through. I have not had children yet, so I know the fears and sadness you are going through.

    I will post a better response later, but please know I'll be thinking of you, and that you most likely have a lot more options than your regular gyn is telling you about. Mine had told me I would need a hyst, and I was the one who told him about the trach. With early tumors, the treatment is more and more conservative.

    Pickle, forgive me if you've already said this but I've only skimmed this thread: I believe they use tumor/lesion interchangeably sometimes, although lesion is usually used for smaller involvement. My path reports referred to the size of my "tumor," although it also noted that I had no clinically visible tumor; the explanation given to me was that any section of malignant tissue is considered a tumor.

    Big ((hugs)) and best wishes to you PK, and please don't be afraid to ask any questions you may have.

     
    Old 07-21-2009, 06:05 PM   #9
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Oh, I would be so so happy if I don't have to have a hysterectomy. I don't want to get my hopes up but that would be so great. I can't make it through the day without crying and that is a big thing I'm upset about. It's so great to see women who have been through this and are doing good. My boss knows a woman who was diagnosed at stage 3 and had surgery and is doing great. I think I'm going to give up on mascara for a while, it's not lasting until the end of the day lol. It was gone 10 mins after I got to work today. Last night was bad because I was hurting and I was getting upset and didn't sleep much. He asked me about it the morning and I had a meltdown. To his credit, he talked to me for about 20 minutes and was supportive. The doctor said I'm healing well considering how much they cut out last Monday but jeez, it still hurts. I can't stand/walk for more than 10 minutes or so. the gyn said no exercise before the next surgery and I'm really missing my dance dance revolution. The oncologist is the one who would do the surgery, the gyn hasn't done one on a cancer patient before.

    Thank you all so much for the info and support. I know you know how much it means.

     
    Old 07-22-2009, 06:10 AM   #10
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Hi again --

    I hear you on the mascara; Chanel Inimitable waterproof is also cry proof. There's also a L'Oreal one that works well; I'll get the name of it for you!

    You were looking for funny stories, so here's one for you: after my surgery I had to have a catheter for a week (I was against it at first, but it was definitely better than self-cathing, and although I was very glad to get rid of it, it really wasn't that bad). Anyway, when I first came home I was sitting on the couch, and had the big catheter bag hanging from the back of a chair in front of me, so obviously there was the tube in the way as well. So, my loveable, hairy beast of a cat came up and started trying to chew on the tube. I was like seriously now, come on cat, give me a break! He was more interested in the tube than seeing me home again. This part isn't really funny, but exactly a week later my poor baby developed a urinary blockage, and had to have his own catheter! I was like hmmm, payback's a b*tch, isn't it....although it broke my heart to see him sick. Luckily all ended well, for both of us. We can both now pee on our own

    Now for the serious stuff....have you seen your pathology report from your surgery? Is there a mention of the size of your tumor? If your doctor is still calling you Stage 1, there's a good chance that a hyst is not in your future. If the gyn/onc you see says he doesn't do trachs, go find someone else, even if you have to travel, although luckily more and more docs are doing them. Also, unless there's some physical reason that they can't do it laparoscopically (as in your are very small framed, or have other weight-related/bone structure issues), don't let anyone do it abdominally!!! I had my surgery laparo with a robot assist, and my healing time was minimum. I had consulted with a gyn/onc at Sloan, and he only performs trachs abdominally -- which means they give you a C-section type cut, and cut the abdominal muscles, which means a longer recovery. I ran from that office, and never looked back. Even my Yale surgeon said there's no need to put someone through that.

    My biggest "problems" post-op were fatigue, and the let down from all the emotional turmoil pre-surgery. I am, quite frankly, amazed at how well I'm doing. I feel very, very lucky. I hope you will soon be feeling the same

     
    Old 07-24-2009, 08:02 PM   #11
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    No, I haven't seen it yet. I'm assuming I'll see it Tuesday when i see the oncologist. Oh yeah, I'm definately having the emotional turmoil. My family can't play nice with each other and I am so not in the mood to be in the middle of it. I fell Tuesday night and have had a lot of pain the last couple days and told work the doc thought I should be home but since they were short handed I would try to make it through the week. Well that was out of the question this morning and the manager was a total jerk this morning wanting to know why I didn't call him last night. Um, didn't know I wouldn't be able to even sit up this morning that's why. It's not like he hasn't known for 2 days that is was a possibility. So then they decided to start my fmla today which should be fine I guess. I just don't trust them. they fired an 8 month pregnant woman for no reason. I have a mostly sit down job and I'm in pretty good shape, how long do you think it will be before I can go back to work? Does everyone have to have a cath? I hadn't heard that yet.

     
    Old 07-24-2009, 08:04 PM   #12
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    OH and about the cats, that sounds like something my siamese boys would do. I'll have a water bottle at the ready lol

     
    Old 07-24-2009, 08:52 PM   #13
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    I had a total LAVH (uterus and cervix only) and only had the cathater in the hospital. It was removed before I went home.

     
    Old 07-25-2009, 03:17 AM   #14
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    [QUOTE=pkreno;4043608Does everyone have to have a cath? I hadn't heard that yet.[/QUOTE]

    With a trach, you will almost certainly have a cath for about a week. Some docs may say you can self cath when you are released from the hospital, and that was my plan, but the nurses talked me out of it and said just keeping it in would be much easier. They were right. The reason for the catheter is to keep pressure off of where you are healing. Since they are pretty much taking stuff out and sewing you back together, they don't want pressure from your bladder stressing that area. There's a bunch of little things they don't really tell you, and in my opinion sneak in either right before or after surgery, but in the long run, they are minor. The important things are qualifying for the surgery and that they don't find infected lymph nodes or some other further involvement.

    Definitely keep the water bottle handy, as well as a pillow to put over your stomach to keep the kitties from jumping on you! My two were so happy to see me they just wanted to lay on me -- all the time. Even a 10 pound cat is not something you're going to want pressing on you for the first couple weeks!

    Sorry to hear your boss is being a jerk. FMLA entitles you to 12 weeks every 12 months (some states give you a little more time, but 12 weeks is the minimum per federal law). If you have the trach laparoscopically and have no complications, you should be back at work within six weeks tops. My doc had told me to expect to be out 3 to 4, but that within two I should feel well enough to drive and go back to light activity -- but that this was major surgery and he would write me out for six weeks if I wanted. I went back just after three weeks, but only four hours a day. Honestly, I probably should've stayed out one more week, but going back wasn't that bad. I then stayed on the four hours a day for about six weeks, although I could have gone back full time after about 2-3 weeks of part time, but I just didn't want to! Although I was quite tired, more so I think from the emotional aspect of things than from the physical.

    I am now exactly five months post-op, and honestly, knock on wood, I have no after effects, and feel the same as I did before. Aside from the four small scars I have, you wouldn't know I'd had anything done. I am completely amazed at my recovery. Now I just need to keep hoping that nothing ever, ever comes back, but that is something we all struggle with. Luckily the stats are on our side that once taken care of, this stuff shouldn't come back!!!

     
    Old 07-25-2009, 08:59 AM   #15
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    my oncologist uses the da vinci machine which I guess isn't too common. From the stories I read on the website, you are good to go in 1 to 2 weeks. After the way they acted yesterday, I'll take 3 or whatever I need to be 100% again. The money issue has gotten much better so I'm no longer worried about that. Has anyone had one with the Da vinci machine? There are 10 or so people giving testimonials on the website who almost make it sound fun lol, but it's their website so I'm curious to see if I can find someone who isn't on their website. the video of how they do it is something to see too. It sounds like that may not be as painful as the cone biopsy I just had, which would make me happy! I was wondering about the recurrance rate but haven't been able to find anything. so it's pretty low then?

    yeah, I have 15 pound cat who always wants to lay on me when it's hot anyway, the weird boy. I also have one who has spina bifida and has limited use of his back legs but can get on the couch and bed and always wants hugs and kisses. It's extra hard to tell him no. He is the sweetest cat I have ever seen. He was given a 10% chance to make it to 6mos and he is 2 years old. I have to express his bladder every day and bathe him at least once per week. I have someone who knows how to help me so I don't need to worry about him too which is good. I have other special needs kitties but they don't require daily maintenance now.

     
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