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Newbies: There is always hope.

It happened to Me's picture
It happened to Me
Posts: 203
Joined: Apr 2014

This new thread is being added as a request from EZLivin.

Of course, no one wants to join this board but sometimes we have to.  I am an almost 5 year cancer survivor.  Feb., 2013,   I had been spotting or bleeding for over 2 months.  I thought this was normal because I was 51 at the time and thought maybe I was going through "the change".  My world changed in June, 2013.  I had gone to a new gyn because my regular PCP wanted me to get checked out by them based on my "bleeding".  The gyn did a pap and it came back with two different atypical cells.  That is highly unusual to have two different kinds.  They did a colposcopy and later in the month, I got the phone call.  Since it was cancer, they sent me to a GynOnc.  I was told by this particular gyn that this was the "best" kind of cancer as a hysterectomy and maybe radiation would take care of it. It was also rare that Endometrial/Uterine cancer is detected on a pap smear.  I give God the glory for making sure those cells got where they would be detected.    I got a CT scan before my first appt.  When I got to the GynOnc, he told me, "you have a very rare kind of cancer.  Normally, women in their 70's and 80's get this form of cancer."  He then proceeded to tell me that radiation was not an option.  Didn't know why, but found out later that the cancer had already spread.  So, the journey began.  My kind of cancer was Uterine Pappilary Serous Carcinoma (UPSC).  Early on, I decided a few things.  1.  I would always have someone who wasn't emotionally involved to be with me at every appointment to write things down that the doctor said.  2.  If I had to have chemo. and would lose my hair, I would cut it off the minute it started falling out and I would not wear a wig.  3.  I was going to talk about my cancer to people so they would feel at ease talking to me  4.  I would have a Caring Bridge so I wouldn't get so many phone calls when I wasn't feeling good.  5.  I would hold onto my faith and find something to be thankful for everyday.     I wrote down questions before each appointment.  After my hysterectomy, they staged it and found it was 3A.    Ladies, don't look at the internet, that freaked me out.   I had 6 rounds of chemo..    All that to say, is that coming to this board is a good thing.  A place where you can vent, ask questions and shout with joy for the victories.  I found this board after I had finished chemo., so I didn't benefit from all the advice these great ladies had early on, but found solace knowing that there were other women out there with the same kind of cancer as me.  One piece of advice I got from a Breast cancer survior friend of mine was Focus only on the next event, don't look ahead because it could make a person anxious.  Don't presume or assume anything.  If you don't trust your gyn/onc, find another one.  I trusted my GynOnc explicitly.  If you need a second opinion, then get one.  If you have questions, don't hold back.  It is your body.   As of March, I have only two 6 month check-ups until I will graduate to yearly.  I will be 5 years NED unofficially in Jan., 2019 and officially in Mar, 2019.     You can do this ladies! 

P.S.  One thing that I want to add is that, your body needs rest.  Don't neglect that.  Get a team of family, friends, co-workers etc. to help you and never be afraid to ask for help.  I was/am single and I learned the best thing to do to help me get well was to get rest.  

 

Jeanette

 

barnyardgal
Posts: 179
Joined: Oct 2017

It was great hearing your story. I am 3a also,  though regular endometrial adenocarcinoma, not UPSC. I am currently getting radiation now, and it's wonderful hearing good news from cancer survivors. Thank you again for sharing your story and congratulations at almost reaching that 5 year mark!

EZLiving66's picture
EZLiving66
Posts: 1299
Joined: Oct 2015

Thank you so much, Jeanette, for posting this.  It contains so much great advice and information along with a message of hope for all of our futures!

Love,

Eldri

 

pinky104
Posts: 574
Joined: Feb 2013

I like the advice to only look towards the next event.  Most of the time, that's what I did.  My advice is to not assume your cancer can't come back after 5 years.  Everyone assumes that's the magic cut-off time for being safe from the ravages of this cancer.  But mine came back after 7 years, and just two months after I was told not to worry about my slightly elevated CA-125's, which were still in the normal range, mine suddenly grew rapidly to over four times the normal range.  I had kept up my follow-up appointments, so I'm sure that helped me get seen more quickly and get my surgery done more quickly.  My mother had a recurrence of her breast cancer almost ten years after her original diagnosis, so apparently the tendency towards late recurrences runs in my family.

It happened to Me's picture
It happened to Me
Posts: 203
Joined: Apr 2014

I understand that any one could get a recurrence at any time.  That's the nature of the beast.  At the 5 year point, I am considered cured, which is something I want to hear.  I don't even get CA125's anymore because that wasn't a good marker for me and I would get concerned when it went up even a point or two between check-ups.  My CA125 was only like 9 when I was dx'd and went down to 4 or 5 with each check-up.  The onc. told me it wasn't a good marker and since it was stressing me out so much, we (onc. and myself) decided that we wouldn't be doing CA125's anymore.  I am confident that my gyn onc will run that test if any symptoms appear.   I am sticking with my ARNP gyn onc after I hit the 5 year mark because she knows me and she knows what she is looking for.  I tell her everything going on so she can make the determination if there are any red flags.  I don't have any cancer in my family except my father who had prostate cancer many years ago.  I have always told myself that if I were to have a recurrence, I would deal with that at that point.  I think about cancer almost everyday, but that's because it's a part of my life journey.  The difference is, I don't think about it the same way.  My perspectives on life have changed and am grateful for that because I am a better person for having been through this dreadful disease.  Cancer doesn't control my life anymore.  Pinky, I am so sorry that you had a recurrence.  I am so happy that you kept up with follow-up appointments as I agree that helped getting seen faster and surgery done more quickly.  Will be praying for you and your recovery.    Jeanette

SF73
Posts: 247
Joined: Oct 2017

I loved reading your story. Thank you for sharing. You look very healthy and happy in your profile picture. I love that even though you have gone through tough times, you came out of it with a smile and a very cute haircut. Thanks again for coming back and sharing your story. 

Armywife's picture
Armywife
Posts: 225
Joined: Feb 2018

Jeannette, you made my whole day right now!  I can't even put my finger on why I woke up so anxious I feel like I could cry - and your calming words and your focused points are such good medicine for me today.  Thank you!!

victord
Posts: 1
Joined: May 2018

Hi Armywife.  Thank you for posting this. I'm a 67 year old Vietnam veteran who was just diagnosed with bile duct cancer.  It is very rare, and because of this, I haven't found any forums or threads to it.  But at this early point in taking charge of my life and my body, I first am thinking that cancer is cancer.  I mean, I may be far off the mark here, but I because I cannot find a forum for Bile Duct Cancer, I have to look at it that way or it will be too depressing.  I have a good family and friends who have been very supportive in this.  I was diagnosed about a month ago at the VA Hospital in West Haven, CT.

Things are going way too fast for me right now.  I had a port installed in my neck yesterday, and it's still pretty sore. Treatment starts on Wednesday.  Upon mentioning this to a friend I hadn't seen in a while, he said that when he and his girlfriend had read my text message mention the Bile Duct Cancer, she began to cry and him as well.  He came to see me the next day and told me that his girlfriend's mother had bile duct cancer and had done the Chemo and then the surgery afterwards. With Bile Duct Cancer, what happens (this is as much as I know right now) the person develops a tumor that blocks the bile duct or is in the bile duct.  So if the swelling makes it too unsafe to surgically remove the tumor, then Chemo is done to bring the swelling down so the tumor can be removed.  But in doing this, they also remove your gall bladder, and do some rearranging of things.  This is called a "Whipple" surgery. And this is why he got a hold of me the next day.

In my friends girlfriends moms case, she had the Chemo, (she was rather old at the time, but I'm not sure how old), and then the swelling went down and she had only a partial "Whipple" done.  From what he told me, that was when things went bad.  He said to me to look into alternative treatments, which lead me to the 'cancertutor.com" where nature methods were used to abate and remove cancer.  I am still going to do the Chemo, but I will fight this on my own terms.

My plan is to use the "Cellect Budwig" cancer treatment plan that is available on the cancertutor.com and in addition to becoming mentally laser focused by taking a class in Transcendental Meditation from "TM.ORG" and that way I can remain positive no matter how difficult the going gets.  And now that I have found this support group, to ask for help when I need it and to seek to help and to be helped.  I will join the YMCA and keep myself as fit as possible, and I just bought a juicer and I'm following healthy diets (mostly ones made to get my system centered and balanced, and I think this is a good plan.

I'm pretty scared of the treatment, but I know once I get a handle on it, and as my sister said, "learn from your cancer" and be good to yourself both physically and emotionally, nothing is impossible.  So wish me luck fellow forum'ers, Wednesday is my first day of the Chemo, but when I am feeling better from the diet, from centering myself spiritually, physically and all points around that, I will beat this thing.  I will not allow it to win!

 

Thank you all.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 768
Joined: Feb 2016

Good luck to you. You might check out the liver cancer forum. I did a quick search of bile duct and a few things came up. 

Eddy405
Posts: 3
Joined: May 2018

How do you feel about the CA 125 test do you think it’s accurate mine was 55 they told me slightly elevated but after removing a polyp and some lining they deemed it abnormal and I go to oncologist Thursday. I just finished treatment for breast cancer I’m 61. I had no bleeding for nine years just small side pain recently 

MugsBugs
Posts: 101
Joined: Jan 2018

Reading through this forum it seems like the CA125 is one of the markers for Endometrial Cancer but not a good marker for everyone.  My initial number was 13 so I don't know if it will be a good marker for me - I guess I will see the next time I get blood work.  Anything under 38 is considered normal.  I am sure other ladies will chime in but some of the numbers I have seen in other posts the numbers were 500 or better(worse).  Good luck!

LisaPizza's picture
LisaPizza
Posts: 186
Joined: Feb 2018

My gyn onc said it wasn't a good marker for me (and I agree), but then she kept ordering it throughout my chemo. It was initially 16.3. It went up to 64 post op, but that can happen with any abdominal surgery, so I don't think that one counts. It's been 9.7 to 12 since then. I had stage 3 and large tumor and ovarian met, and still it was only 16.3, so I assume with a recurrence it still wouldn't go up. But I guess it might. 

cmb's picture
cmb
Posts: 304
Joined: Jan 2018

It doesn't seem that the CA125 is a marker for me. Before surgery it was 18 and after I finished all treatment it was 9. So it went down, but it was in the normal range when I still had the Stage IIIB tumor.

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