Newbie

kapffse
kapffse Member Posts: 1
in Uterine/Endometrial Cancer #1

Hello, I wanted to introduce myself. I just got back from my post op appt with my obgyn onc from my complete hysterectomy. What started as endometrial cancer spread to one of my ovaries, so chemo is the route we are taking to make sure that none of the bad cells escaped to other places. I will do the six sessions of chemo and we will talk about radiation when the time comes. I am in information overload about the next steps. Of course, the first thing I did when I got home was start looking on Pinterest for advice for your first chemo session. I wouldn't let myself do that search before now, as I am making myself concentrate on one step at a time. Yes, I am one of those who gets ton of exercise by jumping ahead ;) One of the suggestions was to find a group and become part of a community. So, I thought this was a good place to start. I can tell already there is a ton of information here, and I am looking forward to getting to know you all! 

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #2
    So sorry

    So sorry that you had to join us, but you are so very welcome.  This is a great place for advice, information, and support.  You can always say and ask anything and someone will have support and help for you.  Check our and older post ladies going through chemo.  Much information.

    Hugs and prayers Lou Ann

  • janaes
    janaes Member Posts: 799 Member
    edited August 2016 #3
    Hey welcoe to our site.  I

    Hey welcoe to our site.  I found this site between the time i was finished with my hysterectomy and my first chemo treatment.  I found alot of support and still do. To be honest i dont know what i would do with out it. The wonderful people on this site have walked me through so much.

    I am currently  on day 10 of my 4th chemo cycle. Please feel free to ask questions like Lou Ann

    said.  I read a lot of the old posts too that helped alot. That thread that Lou Ann mentioned is great. I have used it for ideas at times.  Just type in ladies going through chemo in the title bar and it should pull the thread up. 

  • Editgrl
    Editgrl Member Posts: 903 Member
    #4
    Hi, kapffse

    Welcome.  I, too, am sorry you've had to come here, but glad that you found us.   One step at a time is good way to approach things.  There is so much information that it is easy to get overloaded, as you have found.  

    Nothing is off limits here, believe me, so feel free to ask any questions you might have.  The wonderful thing about this group is that no matter what your question, it seems that there will be at least one person, and maybe more, who will have some experience with the topic.

    Since chemo is in your future, I'm just going to say one thing that you may get tired of hearing:  Everyone reacts to chemo differently.  The thread that the women above have referenced demonstrates that.  It's a great starting point for gathering information, but please, ask away with any questions you might have.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited August 2016 #5
    The best advice I received about chemo

    The best advice I received about chemo treatment was 1) stay hydrated - if you feel thirsty, you're already dehydrated, 2) keep moving - even if it's only a few steps - do it, 3) eat high protein meals - your body needs the protein to recover properly, 4) take Miralax every day, it helps keep you regular and 5) stay positive - you can't control much about what is happening to your body but you can control how you react to it. Good luck to you!

    Wishing you strength and hope, Kim

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited August 2016 #6
    Hello kapffse

    I'm with Kvdyson. Her advice is a good starting point. My situation is very similar to yours except that I'm having my last chemo tomorrow. There's a lot to learn when you start out on this journey, but asking lots of questions and seeking answers from multiple sources is empowering and eye-opening. Take control of this beast and know that you won't be alone as you wrestle with it! 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #7
    Just wanted to welcome you to

    Just wanted to welcome you to the board. I echo what the other ladies have said. One thing I'll add is to be kind to yourself. Rest when you need to. There may be days that you just don't feel like doing a darn thing. Also, remember to ask for help. Others want to support you. Let them.

    Please come back with any questions or if you just need emotional support.

    Love and Hugs,

    Cindi

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #8
    My advice for chemo is this:

    My advice for chemo is this:  Pay attention to your body.  If something doesn't feel right, let your doctor know ASAP.  And, if they won't listen, contact your GP to check it out.  Everyone is different - some ladies go through it with barely a symptom and others have it much worse.  It's not worth losing your life over to kill the cancer.

    Love,

    Eldri

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited August 2016 #9
    Welcome to the site....Sorry

    Welcome to the site....Sorry you have to be here....but glad you found us.  I had six rounds of chemo no radiation from 2011.  Just past my 5 year mark. Good Luck to you and as you said there is a ton of information on here and most pretty current instead of the regular Internet which is out of date so do not go there and look up information unless you are on a reliable site.  trish

  • LindyLu
    LindyLu Member Posts: 72
    edited November 2016 #10
    Sorry your here, but welcome

    It's so scary after getting that awful diagnosis.  Collecting as much info as you can, trying to be pro-active into what might be the next step can sometimes get in the way of living in the now.  I found sometimes I just have to step back, get outside myself, and enjoy what the day is gifting me.  It's a delicate balance with emotional and physical ups and downs.  I agree with the others, much info on the web is outdated.  You'll quickly find everyone is different, has a slightly different diagnosis, and experiences the treatments differently.  So, best to listen to your own body, ask questions, and go with what feels right for you.  I've been uplifted and helped so much from this board of courageous ladies.  I'm sure you will find this, too.  Hugs...LL

  • Mirabai
    Mirabai Member Posts: 9
    #11
    Newbie Too

    Hi I am a newbie as well. I had a radical robotic hysterectomy plus sentinal nodes taken, 2 weeks ago tomorrow. All my 6 wounds have healed and I am feeling almost normal again already!
    I posted on the Positive Pelvic Washings thread as that is my main concern and a few welcomed me there but I will be following this thread also as  my cancer is endometrial stage 1a grade 2 and no chemo or radio was recommended, as the cells in the pelvic washing were not at the invasive stage and thought to be as a result of the hysteroscopy and curettings I had 2 weeks prior. I have been through all emotions and feel relieved that no further treatment is needed - yet. I cant stop thinking that it might recur somewhere sometime, so I am changing my diet and following Naturopathic advice on supplements and herbs to boost my damaged immune system (I have had CFS/ME for 20 years). What else can I do? I will be followed 3 monthly for 3 years then 6 monthly. I know they will do a high vaginal pap, what else? CAT scan? This is scary stuff.

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #12
    Mirabai said:

    Newbie Too

    Hi I am a newbie as well. I had a radical robotic hysterectomy plus sentinal nodes taken, 2 weeks ago tomorrow. All my 6 wounds have healed and I am feeling almost normal again already!
    I posted on the Positive Pelvic Washings thread as that is my main concern and a few welcomed me there but I will be following this thread also as  my cancer is endometrial stage 1a grade 2 and no chemo or radio was recommended, as the cells in the pelvic washing were not at the invasive stage and thought to be as a result of the hysteroscopy and curettings I had 2 weeks prior. I have been through all emotions and feel relieved that no further treatment is needed - yet. I cant stop thinking that it might recur somewhere sometime, so I am changing my diet and following Naturopathic advice on supplements and herbs to boost my damaged immune system (I have had CFS/ME for 20 years). What else can I do? I will be followed 3 monthly for 3 years then 6 monthly. I know they will do a high vaginal pap, what else? CAT scan? This is scary stuff.

     

    Welcome to the club no one

    Welcome to the club no one really wants to belong to, but I am glad you found your way here.  This is a great place to come for information, support, and encouragement.  This is scary that is for sure.  it sounds like,your,surgery went well and glad you are healing quickly.  It is great that you don't have to go the chemo/radiation route.  I think it is very normal to worry about check ups.  I believe that different doctors do things differently, some no longer rely on the PAP and some don't do CT scans unless there is a concern.  Some rely on the internal exam and blood tests.  I sounds like you are being very proactive.

    Hugs and,prayer, Lou Ann

  • Virgil90012
    Virgil90012 Member Posts: 35 Member
    edited November 2016 #13
    Mirabai said:

    Newbie Too

    Hi I am a newbie as well. I had a radical robotic hysterectomy plus sentinal nodes taken, 2 weeks ago tomorrow. All my 6 wounds have healed and I am feeling almost normal again already!
    I posted on the Positive Pelvic Washings thread as that is my main concern and a few welcomed me there but I will be following this thread also as  my cancer is endometrial stage 1a grade 2 and no chemo or radio was recommended, as the cells in the pelvic washing were not at the invasive stage and thought to be as a result of the hysteroscopy and curettings I had 2 weeks prior. I have been through all emotions and feel relieved that no further treatment is needed - yet. I cant stop thinking that it might recur somewhere sometime, so I am changing my diet and following Naturopathic advice on supplements and herbs to boost my damaged immune system (I have had CFS/ME for 20 years). What else can I do? I will be followed 3 monthly for 3 years then 6 monthly. I know they will do a high vaginal pap, what else? CAT scan? This is scary stuff.

     

    Also Endometrial Cancer Stage 1A Grade 2

    Hello Mirabai,

    I don't always post but I do follow this site often.  I am very sorry that you had to join this group but it is a good place to come to when you need reassurance or information because the women on this board are very comforting and knowlegeable. 

    I too had the same diagnosis as you.  I was diagnosed with Endometrial Adenocarcinoma, Endometrial Type Stage 1A Grade 2 in October 2014.  I had the robotic hysterectomy with removal of ovaries, uterus, cervix, fallopian tubes, omentum, and 18 lymph nodes.  The pathology report indicated that the cancer was only found in the uterus with less than 1/3 of the myometrium involved.  My peritoneal washings came back negative.  I too did not have any further treatment other than the surgery.  I just had my two-year checkup with my Gyno-Oncologist and so far so good (knock on wood).  My doctor is with the City of Hope Comprehensive Cancer Center in Southern California and as it has been mentioned previously, each cancer center seems to have different follow-up procedures.  Since October 2014, I have had three-month checkups with CA-125 blood test and a pelvic exam.  My doctor also does a Chest X-ray every year but she does not do CT Scans.  She said that she does not do CT Scan unless I have symptoms of recurrence.  Since I have met my two-year mark, I will now be followed every 6 months for the next three years. 

    With regards to special diets, other than losing about 25 lbs and keeping active, I haven't done anything differently with my diet.  I do still have moments of anxiousness especially when I get close to my appointments but it gets better as the time moves on.  I also try to stay really busy and not let those thoughts get to me.

    I hope I was able to help and I wish you the best,

    Cathy

  • Mirabai
    Mirabai Member Posts: 9
    #14
    Lou Ann M said:

    Welcome to the club no one

    Welcome to the club no one really wants to belong to, but I am glad you found your way here.  This is a great place to come for information, support, and encouragement.  This is scary that is for sure.  it sounds like,your,surgery went well and glad you are healing quickly.  It is great that you don't have to go the chemo/radiation route.  I think it is very normal to worry about check ups.  I believe that different doctors do things differently, some no longer rely on the PAP and some don't do CT scans unless there is a concern.  Some rely on the internal exam and blood tests.  I sounds like you are being very proactive.

    Hugs and,prayer, Lou Ann

    Thanks

    Thanks Lou Ann. I am glad I have found this group for support.

  • Mirabai
    Mirabai Member Posts: 9
    edited November 2016 #15
    Thanks

    Thanks Cathy. I gues it will get easier as time goes by - or worse!

    I am inspired by by Dad who was diagnosed with stage 4 prostate cancer in 1995. He chose to have radical surgery including castration and is still alive 21 years later aged 92!

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