Newbie - lots of questions

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I'm pretty wordy when typing - so I could type for an hour or more and go into great detail on so many things - but I'll save you from that and try to summarize.

Had biopsy on 11/30.  Dr. called on 12/2 to say it was cancer and would refer me to gyn/oncologist for CT scan and treatment.  Gyn/onc called on 12/5 to schedule appt to 'discuss' what tests need to be done, etc. but soonest appt isn't until 12/20.   So ... I have many questions for you.

Let me first thank you for being here, taking the time to answer, encourage, help, etc. so many people, including myself.  

1.  Is this how it is typically done?  Basically (in my mind) I hear "You have cancer.  We're not sure how bad, if it's spread, if it started in the uterous and is contained there, or if it started elsewhere and spread to the uterous.  All we know and all we can tell you now is 'you have cancer', and it's Christmas time and a lot of people are taking time off, etc., so the soonest we can get to you is December 20th."

2.  What do you do while you're waiting to find out how bad it is?  How do you keep from being depressed and driving yourself insane?

3.  How and when do you tell your family?  I have 3 adult children (35, 34, and 26), one of which is 10 weeks pregnant.  She miscarried her first (and my 1st grandchild) in June, and I'm afraid to tell her now (or ever).  She knew I went for the biopsy and I was told the results would be back this week, so I know she'll soon ask me if I've heard back from the doctor.   As for my other babies (and everyone else), I don't want to ruin their Christmas with this kind of news.

4.  There is so much info online (yes, I'm a googler) as to what you can do, take, etc. to help things ... what do you do?  Special diet?  Baking Soda?  Vitamin D?  Magnesium?  I'm afraid not to try to help myself, but I'm afraid of making matters worse. 

5.  How does one get and maintain a positive attitude and fighting spirit?  Unfortunately, I have fought a very negative pessimistic outlook for most of my 55 years.

That's enough for starters.  Feel free to answer any and all of my questions - and to ask me anything.  I'm an open book, but didn't want to overshare.  

Comments

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Jascma welcome to our group

    Sure am sorry, but we are a good place to join together and gain information, strength and support.  There are some amazing ladies here with SO much knowledge and we've all been there so BREATHE is the first thing and then just keep asking and reading the threads here and you'll be surprised at how much you can figure out in a short amount of time.

    I know hearing the C word is scary as heck!  Please know that any delay may seem like a LOT but in reality you've had it for some time and it grows along with normal cells at the same rate and more than likely any time between now and your appointment will not change anything.  I had been spotting/bleeding since Nov. last yr and didn't go in til Feb. this year and didn't get diagnosis til April 4th due to appointment mix ups, scheduler errors and Dr. being gone on vacation etc. etc.  When I finally got to the gyn/onc I mentioned it because we were upset and they told me the same thing I am telling you.  I didn't have surgery until April 28th and didn't start chemo til June 3rd.

     

    You will be going through a lot of thoughts and emotions- all perfectly normal- come here to VENT them- we are a safe place.  I wish I had found this group sooner- I didn't find it until after I was completely through treatment.  But I have a very supportive husband and he and I just talked and talked - mostly I did and he listened... lol  I also had one close girlfriend who listened and cried with me.  I think you are going to need your family's support and as much as you might not want to ruin their Christmas etc. etc. I think somehow everyone already thinks it's the worst anyway right?  The faster you can get that support around and under you the better you all will feel is my guess... of course you have the complication of the daughter's health - but she already knows about the problem and test, as you said, and people's mind can't help but jump to the 'what if' worst scenerio so she is already concerned- perhaps once you have time to process and get information from the other ladies you will be able to present things in a least stressful way??????

     

    There is a search button at the top and you can put in things you'd like to search for like alternative treatments, supplements you mentioned etc. and there are threads here that you can read about all that.  I went to a Naturopath and we worked out a supplement, acupuncture, diet treatment plan- She specializes in oncology and I did as you are- googled til my brains got scrambled and I figured I needed help.  I was able to start "doing" something long before I ever got to the gyn/onc and that helped me to take some of my power back.  Whatever you do you will need to be certain to let everyone know as things can affect surgery, other drugs, etc. 

    Lastly, I like you have been fighting depression etc. for many many years and the thought of being positive and having a fighting spirit etc. etc. seemed absolutely impossible to me.... I turned to my faith and prayed a lot, cried a lot, talked a lot and read things about being positive.  I ended up finding that as I prayed and did the next thing, the door would either open or another way would present and I'd go through that door.  I tried to stay in the day I was in- not to think too far ahead.  I began to hear the message everywhere that none of us knows how much time we have and that we need to be THANKFUL today for THIS DAY and look for each miracle and blessing in THIS DAY.  That thought took hold more and more and I looked through eyes that were changing- I saw the green grass, the trees, my fur babies, nature- all living and moving- I heard the music of the stream and the wind- I made time to walk and feel the sunshine on my face- I started to really be present in my life and not rush from thing to thing.  NO ONE can tell you when your time is up- only God can do that.  Someone on here said something like they don't see an expiration date stamped on the bottom of their foot ---so you LIVE the day you have.  You will find you are stronger than you can even yet imagine!!!!!  It's true!!!!  Enjoy the holidays and the family and be mindful of how truly special your life is.

    LOL I'm like you- I could write a book when I get going... sorry if this was long and boring.  I know others will be along with great advice and probably a whole lot more on target.  We're here for you- nothing is too much to ask or to share (keeping in mind it is public info) Linking arms and walking with you and praying for you!  (((HUGS)))

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited December 2016 #3
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    Waiting Game

    Welcome Jacsma, 

    welcome to our group, but very sorry you had the need to find us.

    The waiting game after getting bad news like this is so hard and to get it just before the holidays really sucks big time. You want answers, you want a plan of action, and you want it out of you....like yesterday! Unfortunately, it never seems to work that way and the first thing you need to do is take a breath and mentally prepare yourself for what may be a lengthy journey of testing and treatments. Easier said than done, I know, but that's really the best thing you can do right now until you have surgery and get the pathology results back.

    You can  google all you want, but until you know your specifics you'd probably being scaring yourself witless needlessly reading about all of the possibilities for this cancer. To that I say, from the perspective of where I am in all of this now, it's a waste of time and sanity for you. I won't say to enjoy your holidays while you wait because that would be a ridiculous expectation, but do try to let it help distract you as much as it can.

    Battling this cancer is a one step at a time process. Try not to get ahead of yourself. Right now you're in the coming-to-terms-with- the-diagnosis and how-to-share-the-news-stage. That was hard for me, too, and my husband handled most of that for me. I just didn't want to have to keep talking about it to people over and over. I only wanted to think about it when I absolutely had to and otherwise was an ostrich with my head in the sand. Having to talk to my just my husband once and letting him handle all of the repetitions insulated me from questions I couldn't answer and was therapeutic for him because he's the more social of the two of us anyway. You are going to find that your family will feel less helpless if you let them help you in ways like this.

    It probably won't hurt to google information about PET, CT, and MRI scans because you'll probably have one or more of those tests before any surgery. You could also google about the different ways hysterectomies are done to help you understand your oncologist and form questions about what he proposes when you see him. That's as far as I'd go for now. 

    Hope this helps and gives you some direction. I'm sure others will have some other good ideas for you, too.

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
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    Jacsma - First, welcome to

    Jacsma - First, welcome to our board. You have found the best place to get information and support in my opinion. Second, I'm glad that you found us and so sorry that you had to.  I know it feels like forever, but really 2 weeks out is reasonable.  You will find the waiting is the hardest part though. If you feel overwhelmed, please don't hesitate to ask your primary doctor for a mild anti-anxiety med. I don't take much of anything but I followed this advise to help me for the initial part of the journey. And, I'm glad I did! 

    I think you will find that you are stronger than you think and you will find your way once you have a plan. As far as telling your family, that is a hard one for anyone to help you with. Every family has their own dynamics so what worked for me may be completely wrong for you. Go with your gut on this one!

    There is a lot of very old information on the internet. So, be careful when doing your research. The old data will scare you to death. Also, many women have documented their experience on this board. I think you will find a lot of comfort in reading the posts here. I can't imagine going through this without all of the love and support and information given here.

    It seems like they could tell you what kind of cancer you have based on the biopsy. They can't tell you the stage, but they should be able to tell you the grade.  Also, I can't offer up any advice on what to do for yourself in the meantime to make it better. I didn't change anything but other women did change their diets.  I am almost a year out from my last chemo treatment. And, my life is good. Take this a day at a time and try not to get too far ahead of yourself. There is life after this! Try to enjoy the holidays and get yourself ready for the next steps.

    Please come back and let us know what you find out.

    Love and Hugs,

    Cindi

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited December 2016 #5
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    I'm so sorry you have to face

    I'm so sorry you have to face this and double sorry because what a crappy christmas present!!  I had the same thing happen to me.  My gynecologist called me the middle of August and told me I had cancer and she was referring me to a gynecologist/oncologist.  I saw him the first week of September and he scheduled surgery for September 30th of 2015.  I started chemo October 26th.  It seems like it took forever but I think my timing was pretty normal.  I'm a very patient person and generally pretty happy so the waiting didn't bother me much at all.  

    However, the other ladies (friends) are right - be careful to take what you find on the internet with a grain of salt.  A lot of those statistics are old.  New treatments are coming out all the time.  As for telling your family, I kept quiet until I found out what was really going on.  I didn't want to scare our children who are now 44, 42, 24 & 23.  The youngest was still in college and I really whitewashed the whole thing for her.  The 24 year old had just graduated and lived at home so it was pretty hard to hide anything from him.  The 42 year old had thyroid cancer when she was 19 with a recurrence when she was 38 so she understood cancer better than all of them.  My husband is both easy and hard to talk to.  He has been extremely supportative BUT he simply refuses to believe this is going to kill me anytime soon.  I, on the other hand, made all my funeral arrangements and gave them to my sister who I know will follow through.  

    You just never know how things are going to play out.  People have stepped on a rusty nail and died and other people have half their head blown off and they're still going strong.  Take it one day at a time and enjoy yourself whenever you can.  We're here for you!!  

    Love,

    Eldri

  • Jacsma
    Jacsma Member Posts: 9
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    Thanks, all

    FYI - jacsma = (J), (A), and (C)'s 'ma'.  My name is Pam.  Nice to meet you all.

    Thank you all for your support and input.  I'm a little all over the place right now.  My new, pricey, pre-lit tree is up, but still waiting to be decorated.  (The pessimist in me figured I should just send that back to the store and go with a cheapo version or live tree, as this was an investment for this and many future Christmases.)      All the planned gifts, etc. that were in my head are kind of a blur right now.  I'm a crafter by trade (putting my Etsy shop on vacation mode was the first thing I did, 'cause I know I can't keep up with orders, Christmas, and all this.  Speaking of which ...  dang it!  I have outstanding orders to create and ship; I gotta get that done ASAP.)  Anyway ... crafter by trade .... so my family has come to expect nothing but fabulous handmade gifts from me, but all the projects I had started or planned to start are a bit of a jumble in my head right now.  

    I have many thoughts, concerns, and vents waiting to be shared ...   but ... maybe later.  

    It's a real struggle to keep my mind off of things, and not 'feel' every little pang, pain, hiccup, etc. that's going on in my body right now, allowing it to reak havoc on my mind - but I'm gonna try to go and get things done (orders, decorations, gifts, etc.) and try to free my mind of it for a bit. 

    Pam

     

      

  • cindy0519
    cindy0519 Member Posts: 173
    edited December 2016 #7
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    Sorry you had to find this

    Sorry you had to find this place but it is a great source of support and information.  Not sure I have too much to add that I will add this... when I was diagnosed with breast cancer (May 2015) but breast surgeon suggested avoiding "Dr. Google".  She said it will scary the pants off of you and it may not be the most accurate information available.  When I was dignosed with USPC (Sept 2015) I quickly took to the internet in search of answers and oh boy! was the breast surgeon right.  Scared stiff and without many answers was my only result.

    It's hard to wait for answers and deal with the unknown - but try to take a few deep breaths and find things to occupy your mind until information is available.  Thinking of you!

  • Kvdyson
    Kvdyson Member Posts: 789
    edited December 2016 #8
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    Pam, it's good that you've

    Pam, it's good that you've got orders to fill and crafts to make - focus on those things while you wait for that next appointment.

    You may also want to ask your doctor for a copy of the pathology report from that biopsy. It should tell you what type of cancer they think it is. That will help guide your research - but beware, because just like everything else on the internet, there are many things you will read about your diagnosis that are outdated, unreliable or just plain fake.

    I told my husband as soon as I got the original news but waited to tell my adult daughter until after my appointment with the gyn-onc since I knew that she would have a lot of questions and I wanted to have as much information as possible to be able to answer them.

    For me, the fighting spirit really kicked-in once I started joining on-line support groups like this one. Seeing that there were others who had gone through what I was about to experience and who made it to the other side made me know - not wonder, not worry - but know that I could make it, too. And so will you. 

    Wishing you peace and comfort, Kim

  • Soup52
    Soup52 Member Posts: 908 Member
    edited December 2016 #9
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    I'm so sorry that you had to

    I'm so sorry that you had to find us, but it is a group with many wonderful people who have much info and support. Yes, the waiting is sometimes the worst, but honestly your schedule so far is pretty good. It was two weeks after my d and c before I went to the dr office where I was given a copy of my report. I was referred to the gyn. Oncologist and that probably took at least a few weeks before getting in. Long story short- symptoms in mid July- hysterectomy mid October- treatments finished including radiation and chemo in June. I'm currently NED( no evidence of disease. Like others have said be careful about the Internet, but you would probably find it helpful to get copies of you reports after tests are done. It is hard to say not to worry because we all do, but try to take one day at a time. We are all here for you! Keep us posted and ask all the questions that you need to.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #10
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    Keep the beautiful tree

    You will have many Christmases to enjoy it.  Take a breath, this won't be easy but you can do it.  Sorry you have to.join us, but I glad you found us.  This is a great place to be.  This will be my fourth Christmas that the big C has been part of.  I am on active,treatment and will be for the rest of my life, but I have many more good days than bad.  After four years, I am still here.  Working on your crafts will be a good way to spend time.  I worked for two,years teaching school and it was a lifesafer.  I didn't have time to feel sorry for myself or worry.  I was diagnosed two weeks before school started and I ended up telling my co-workers first out of neccesity.  I waited to tell my kids until I had more information.  My youngest daughter was a little upset that I had told people at work before them.

    Hugs and prayers, Lou Ann

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Pam, I really can't add to

    Pam, I really can't add to what everybody has already said.  So, I'll just welcome you to the board.  It has been a lifesaver for me, and I hope it will be for you, too.  There's no substitute for talking with women who are going through exactly what you are.  No matter the issue, it's almost guaranteed that someone here will have some experience with it.

    Peace and strength,

    Chris

  • janaes
    janaes Member Posts: 799 Member
    edited December 2016 #12
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    Welcome to our board.  Its a

    Welcome to our board.  Its a wonderful place.  Waiting is hard  After i found out i had cancer I continued to work.  I had someone tell me that she would have quit and i  thought to myself and said that would be harder so keeping busy helped me.   I told mt family right off and thart helped too because i had the support as i waited.  May you find peace as you wait

    Janae

  • Jacsma
    Jacsma Member Posts: 9
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    Thank you, Ladies

    I don't really wanna open up a scary can of beans (I only google things that I think will give me hope or help) but I think what's making matters worse for me are symptoms that my mind thinks is 'it' in my lungs.  I've had pain in my upper back and pretty bad shortness of breath that seems to be gettting worse.  I hope it's psychosomatic, or if it's real - that it isn't what I think it is.  I could be wrong (haven't googled because I don't want to scare myself), but I think I could handle it (at least emotionally and psychologically) if the symptoms were exclusive to the uterus.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #14
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    No carts before horses

    i know this from my own worrying.  Sometimes our aches and pains truely turn out to have other reasons, but we jump to the cancer answer for everything.  The pain in my lower back turned out to be a SI joint problem,  the pain at the end of my,esophagus turned out to be gastritis,  the pain in my upper back turned out to be simply gas that Gas X fixed.  Don't be afraid to,ask your doctor, but don't waste your,precious time worrying until.you know you what it is.

    Hus and prayers, Lou Ann

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    edited December 2016 #15
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    Pam, I can only agree with

    Pam, I can only agree with what has already been said.  

    Try to breathe.  

    Don't be afraid to ask for some Ativan or something to help you get through this short period of waiting - it is the worst part.  

    I would recommend sharing the news with your family - if you have a good family - they will want to help you in whatever way they can.  (It is hard but I had to tell my mom less than a month after we buried my father and her husband - yeah - that sucked)  

    Yes, be careful of Dr. Google - he has old information out there.  

    You found a great group of women who will truly understand and always be there for you - you can't beat this group!

  • Jacsma
    Jacsma Member Posts: 9
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    Thank you

    Thanks, Lou Ann <3