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  • diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes :)

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    Old 09-04-2009, 07:30 PM   #31
    pkreno
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    thank you! I had it last Thursday. I ended being in the hospital thursday am to satruday around 3 pm because they couldn't control the pain, which is weird because i hardly ever even take tylenol. I also ended up in the e/r sunday because I was trhowing up all night saturday night. the pain decreased big time the last couple of days thank goodness.I see the oncologist and radiation dr Wednesday and hopefully can start soon. I still make have to have the hysterectomy before all is said and done. it really needs to be this year though before insurance rolls over. I don't have the first $8 k, let alone another 8k lol

     
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    Old 09-05-2009, 11:01 AM   #32
    zoe96
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Hi PK --

    So sorry to hear about all you're going through and that the pain was so bad. I didn't have to have radiation or chemo, so I can't give you much info on that, but here's the little that I do know from discussions before my surgery.

    It's my understanding that the chemo they use for this does not make you lose your hair, and is rather mild -- but it does do something to aid in the radiation treatments and make them more effective. As for the radiation, there are some newer types that are more localized and therefore cause less damage to surrounding tissue, but not many facilities offer this type of radiation. I know Univ. of CT uses a type called TOMA (I think that's how it's spelled) that is much less broad spectrum and localized, and it is used for cervical cancer (there's some treatments like the Cyber Knife radiation that is used in breast cancer and prostate cancer, and is only now being tried with cc). In any event, maybe it's worth bringing up with the doctor(s) to see if there's such an option available to you.

    I'm glad they moved your ovaries out of the way, so that you can hopefully benefit from your own hormones, so HRT will hopefully not have to be something you'll need.

    I'll be thinking of you and wishing you a speedy and successful recovery! Keep us posted on what's going on and what options the docs are offering you....

     
    Old 09-05-2009, 07:29 PM   #33
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    I am confused, why did he not do the hysterectomy?

    So, sorry for everything you are going through. I have just been diagnosed for 2nd time with stage 0 adenocarcinoma in situ......

    Jac

     
    Old 09-06-2009, 06:21 AM   #34
    zoe96
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Hi -- I'm not PK, but it's my understanding that most times if they discover infected lymph nodes they will not proceed with the hyst since radiation will be necessary, and keeping the organs in place protects other organs in the body from damage due to the radiation. The radiation will arrest the growth of any tumors on the infected organs, and then depending on the size/stage and effectiveness of the radiation treatment, they sometimes go back and do more surgery after the radiation is completed.

    I also believe they don't do the surgery because I *think* they can start the radiation more quickly, since they don't have to wait for you to heal from the surgery before beginning those treatments. Someone please step in to correct me if I'm wrong, but from what I've read, that's the standard course of treatment.

    Jacmay -- sorry to hear about your diagnosis

     
    Old 09-07-2009, 12:36 PM   #35
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    zoe is correct about why they didn't do the hyst. I'm having things that I'm assuming as associated with the lymph nodes being removed, they removed 40 of them like pain in my thighs and lack on sensation on my skin on my stomach and upper thighs. It has gotten better at least Yes, they have the tomo machine here which is what they'll use I'm sure to do the radiation. does anyone know how likely it is for the cancer to return if they don't end up doing the hyst though ? I dont' really want to have surgery again but i really don't want to go through this again either. I'll be asking him at the appt too but I was wondering if anyone knew. I was so upset to find out that this wasn't over, he didn't tell me about the chance of the lymph nodes being infected. Only 2 of the 40 were so it's not too bad I guess. he took them all out so at least no more can be infected and the infected ones are out.

     
    Old 09-07-2009, 03:59 PM   #36
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    PK -- I am *soooooo* glad they have the tomo machine! From what I understand, there are many fewer side effects from this type of radiation, and treatment is much easier than other forms. I don't know the stats on recurrence rates whether you have a hyst or not, although if after the radiation they think there is still a live tumor I suspect they will perform more surgery -- but, if the only reason your doc didn't do the hyst was because of the lymph nodes (and need for radiation), I'm suspecting that he/she feels that the radiation will take care of the tumor as well. In any event, I hope you don't need further surgery as well!! I do vaguely remember discussing surgery versus radiation with my doc when we were discussing all the possible what ifs, and when I asked if it was possible to have only radiation and not a hyst, he asked why I would want to do that instead of "just" having surgery -- point being he gave me the impression that if I had radiation, I would not also have surgery. Thankfully my trach was surgery enough, so I consider myself very lucky!

    I have a question for you on your lymph nodes: did they do sentinel mapping on you? I suspect they didn't, since you had 40 removed and generally they only take the sentinel nodes first and then move on from there. I'm asking because I declined to have all my lymph nodes removed and relied on the sentinel mapping only. All of the studies I have read show that this is around 98/99% accurate, and a lot of facilities rely on this -- but so far Yale doesn't fully accept it, and I haven't really kept up on the literature since my procedure. Anyway, I'd just be curious as to which lymph nodes were found to be problematic for you, and if they know whether they are sentinel nodes (the sentinels are different in each person).

    Also, did you have your procedure laparoscopically or was there an abdominal incision? I've read that sometimes the abdominal procedures result in some numbness in the groin/thigh, which often times resolves itself. In any event, glad to hear it is resolving, and hope that pain/discomfort is gone very soon!!!

    PK -- I'm sending big hugs your way, and please keep us posted on what's going on. ((hugs))

     
    Old 09-07-2009, 06:23 PM   #37
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    the 2 that were affected were sentinel abdominal lymph nodes but the aortic lymph nodes were not affected, which apparently is very good. He is very aggressive and the surgery actually lasted 3 hours. It was done with the da vinci robot which is similar to laproscopic. I hope the chemo and radiation will be the end of it. I want to get back to normal already! I'm just worried about the possibility of it coming back.

     
    Old 09-08-2009, 08:57 AM   #38
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    So glad the aortic nodes weren't affected! I only had 3 sentinel nodes removed, and I can't remember exactly which ones they were but they were definitely pelvic (the other 8 nodes were obturator, which are near the ovaries, and were not sentinel nodes but my doc said that would be the next most likely place something would occur -- since Yale doesn't believe in Sentinel node mapping alone). I had the Da Vinci robot as well. Thought it was kind of cool since I'm an art history major

    Hope you are feeling better every day. And yes, let's hope that the chemo and radiation is the end of this for you!!! Unfortunately, recurrence is something we all live in fear of....I go for my six month follow up on Thursday and have been nervous about it for a couple weeks now. I'm hoping the anxiety gets less and less as time goes on...but I'd rather have some anxiety and then get a good report of health than not worry and find out there's a problem.

     
    Old 09-16-2009, 04:39 PM   #39
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    ok, here's the update. I have an insane chemo/radiation schedule for the next 8 weeks. I will have one, the other, or both 5 days/wk for 7 weeks. A total of 11 days will be all day events, 6 for chemo and 5 for radiation. There are also Dr appts, blood tests, chest xray and misc other crap thrown in there for good measure. Why all this for stage 1? Even though my tumor is very small, it still managed to get into the lymph nodes (very unusual) which means I am considered a stage 3 patient. however, I am still at a 90% recovery rate because it was only in 2 nodes, the tumor is tiny and I am otherwise healthy. They won't give you over 90% so I am still at the highest recovery level. The tumor is tiny but they are going all out to make sure the tumor is totally erradicated since the cancer I have is rare and aggressive. If any of it somehow manages to not be erradicated, they will do one more surgery and that will take care of it. So there is an end to this in sight!!!! Since they took all of the lymph nodes out, it can not spread anywhere else. They also gave me a social worker to deal with and coordinate the financial stuff so I don't need to worry about that. I'll be going back to work next week some time and starting treatment on the 28th.

     
    Old 09-16-2009, 04:57 PM   #40
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Wow, that is an aggressive schedule, and I am utterly amazed and impressed at your upbeat attitude. I think THAT is your best weapon in all of this!!! I'm glad they are keeping you well informed and that you are getting some assistance and support -- and you know all of us are here for you!!!

    I didn't realize that the spread to the lymph nodes pushed you all the way to Stage 3. Out of curiosity, how large/small is your tumor? And you are diagnosed as adenocarincoma, right, and not another type of tumor?

    I'm so sorry you are having to go through all of this....I wish you all the best for your upcoming treatments. Please keep us posted on your progress!!!


    (((hugs)))

     
    Old 09-16-2009, 08:08 PM   #41
    pkreno
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    yes, it's adenocarcinoma. I copy/pasted from my ******** post lol. It's 2 mm or cm?whatever stage 1 would have been. believe me, my attitude isn't great every day lol. I feel much better now that I have someone helping with the financial stuff. The hospital was making me angry, not helpful and giving me numbers for people who didn't call me back which I talked to the Dr about and she hooked me up with the social worker. The radiation doctor is awesome. she spent an hour and a half with me, went over everything, gave me a tour of the chemo and radiation areas, showed me how everything works, and even introduced me to the ACS rep, the social worker, and the head of that department. I really like her.

     
    Old 09-16-2009, 09:36 PM   #42
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Oh okay. I think it must be 2cm. Actually Stage 1 is huge -- goes all the way from a <1mm lesion all the way to one that is 4cm -- although 2mm would be Stage 1a2, and 2cm is Stage 1b2. They generally don't even do a lymph node dissection for under Stage 1b1 (unless you're right on the fence, as I was -- I was either 1a2 or 1b1 depending on which pathology lab report you went by), AND 2mm would have made you eligible for a trach.

    That is awesome that the radiation doctor is doing so much to make you feel comfortable and familiarize yourself. Now you need to remember to charge up your iPod and/or Nintendo DS or whatever you have to keep you occupied during those lengthy treatments!!

    I would also suggest getting some PJ pants and undies made of some really comfy, soft material. A dear friend of mine went through extensive chemo and radiation (not for cc, but for another condition) and her skin was very, very sensitive. Anything silky/really soft/really smooth felt sooooo good to her.

    Those bureaucrats at the hospital (and penny pinching bill collectors) all need a turn at being seriously ill and having to deal with someone who's a real pain in the *** and totally unsympathetic to what they're going through....I'm glad you've got someone to help out with things and take at least some of that pressure off of you. You've got enough to deal with without someone worrying about how they can get every dime out of you.

    Well, while your attitude may not be great every day -- which is COMPLETELY understandable -- you definitely sound like you are handling things very well nonetheless. Like I said before, your courage is amazing and I'm sure will help you get through all of this. You are obviously one special lady!!!

    Keep us posted on how you are doing -- or just stop by to vent!

     
    Old 06-22-2010, 04:22 AM   #43
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Hi PK,
    I have been diagnosed with Stage 1A adenocarcinoma malignum after LAVH (no lymph node dissection, since they were not expecting invasive cancer!) and treatment plan is now 6 weeks pelvic radiation (external and internal) as well as chemo. How did your treatments go? Any info is appreciated as the radiation plan has me more than a little scared. Thank you!

     
    Old 06-22-2010, 10:54 AM   #44
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Hi there --

    sorry to hear of your diagnosis. Did they tell you why you are having chemo and rad for Stage 1A? You said you did not have a lymph node dissection, so I'm assuming they did not suspect there is lymph node involvement. I had Stage 1a2/1b1 adenocarcinoma and DID NOT have rad or chemo. Unless you are one of the small but unlucky minority who have lymph node involvement at this early stage, it is generally not necessary to have such treatment. You only need chemo/rad if there is residual disease -- so if you have had an LAVH, there is no more tissue to be affected, and if your nodes are clear, then I'm not sure why you are having this treatment. I would definitely question your doc as to why he is recommending this!

    Best of luck with your treatment and for a speedy recovery.

     
    Old 06-22-2010, 02:02 PM   #45
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    Re: diagnosed with stage 1 adenocarcinoma, looking for thoughts, encouragment, jokes

    Quote:
    Originally Posted by zoe96 View Post
    Hi there --

    sorry to hear of your diagnosis. Did they tell you why you are having chemo and rad for Stage 1A? You said you did not have a lymph node dissection, so I'm assuming they did not suspect there is lymph node involvement. I had Stage 1a2/1b1 adenocarcinoma and DID NOT have rad or chemo. Unless you are one of the small but unlucky minority who have lymph node involvement at this early stage, it is generally not necessary to have such treatment. You only need chemo/rad if there is residual disease -- so if you have had an LAVH, there is no more tissue to be affected, and if your nodes are clear, then I'm not sure why you are having this treatment. I would definitely question your doc as to why he is recommending this!

    Best of luck with your treatment and for a speedy recovery.

     
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