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Moving forward

janaes
Posts: 800
Joined: May 2016

Hello,

I havent posted on here for quite some time. I was. thinking of something today that i was hoping to post about.

So some of you ladies who have been on here since i started know that my uterine cancer was the second cancer i was diagnosed with. My first cancer was Hogkins Lymphoma and was diagnosed with it about 25 years ago. I was treated and had a very good prognosis of it never coming back ( a very curable cancer ) i felt very lucky at the time that it was so curable. After 5 years didnt think about it much and even before when i was doing follow up careb i felt very hopeful and didnt worry much about it ever returning.  And of course it hasnt.  Oncologist doctor, who treated me for my uterine cancer, said i got uterine cancer because of the radiation from my previous cancer.

 

I am 3 months past my 3 year mark ( i just figured it out that it was the 3 months). But before this realization i was not liking the idea if waiting six months for my follow up after doing 3 months previosly.  I was excited about waiting six months at first and even posted about it.

 

So this is it. As much as i dont like it, this uterine cancer is not as curable as my last cancer. I say that because Ive  heard stories of people who havve had there cancer reacure even after years. Ok I am trying to be optomistic here but at the same time be realistic too. 

I know the six month intervols is what my doctors rrcommend right now so that is of course what i am going to do but i just cant help but wonder a little more about reacurrances.

Things just seem to be different for me with this cancer than my previous one.I think about reacurance more often. It would be nice to just move on like i mostly did with my first cancer. But at the same time i say that, i kind of wish my first cancer doctors would have prepared me more by telling me radiation from cancer (especially Hodkins Lymphoma) could give you second cancer.  I realize doctors didnt know as much back then but i was totally blindsited by my uterine cancer diagnosis and that it was caused by the other cancer. My previous cancer doctors told me i had just as much of a chance getting cancer again as any one else. Thats what i remember.

So i feel i have to live with more cautuon than before but at the same time still move forward with life. I think thats what i am going to try to do. So maybe just writing this out and getting it off my chest will help me to move forward. In fact im sure it will. Thanks as always for a safe place to share.

Janae

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Janae, thank you for sharing your thoughts on this.  I am sure it will help others who find themselves in these milestones.  Like you, I recall having the feeling of being 'thrown off a cliff' by my doctors when I went from treatment, treatment, treatment to, "we'll see you in three months".  WHAT!!  Then after a few years of every three years they throw you off a cliff again and say, "we'll see you in six months".  WHAT!!!  It is the graduation gifts we want but it is terrifying as well.

Again, thank you for sharing with us all.

Forherself's picture
Forherself
Posts: 535
Joined: Jan 2019

Hi Janaes, nice to hear from you again.  You have passed the 3 year mark and that is great.   I think women who don't have recurrence drift away from the board so we don't hear from them as much.  Your chances go way down after 3 years.  You are older too, so I suspect that is part of the reason you worry more.  Young people don't seem to worry much about things.  It is hard, and this is the place to come and talk about your new concerns.  Most people can't understand this part of cancer.  I worry too.  Hugs to you

cmb's picture
cmb
Posts: 679
Joined: Jan 2018

I was doing chemo three years ago at this time and not feeling particularly optimistic about the outcome for my aggressive form of cancer. So I was pleasantly surprised to be NED two years after diagnosis – the time frame in which uterine carcinosarcoma often recurs. When I was still NED three years after surgery last December, I was grateful for what I consider to be "bonus" time. But not a day goes by that I don't think about the possibility of a recurrence.

But I have become cautiously more optimistic. I no longer renew my magazine subscriptions for one year only. And while I just fostered kittens after my older cat died while I was doing chemo, I recently adopted a new cat. Now I did find a cat who was already friendly and sociable – unlike the shy-feral ones I used to adopt in the past – just in case she needs to be rehomed sooner than later.

I'm not sure that I'll ever be completely at ease again, especially since my Lynch Syndrome can also cause other cancers. So I understand how we all think about recurrences, even as time passes after treatment. But as time goes on, I too try to move ahead.

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

Yes, I feel the same. As the months go by and I am getting closer to the two year mark, I am starting to feel the same way. I had a scare in December which turned out to be nothing at my last checkup and CT. But this hopefully will turn into a transition phase to being closer to a “cure” ( such as there never really a cure for the aggressive types) but as time goes by there are definitely stages of “survival“ that were not apparent to me while in the throes of first dx and treatment. We learn we grow and we adapt. 

Denise 

 

 

 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

I know how you feel. It's almost like I'm afraid to think about my five years coming up this year. I have never cut my chemo hair and it's down to my waist now. I'm scared that if I do, the UPSC will come back. I know that's crazy but at the same time, I think I'll just let it grow. I've recently had something go really wrong with my T2 diabetes. After twenty years of a normal A1c, mine went from 5.9 to 8.9 in 15 months. My new doctor talked about taking me off Metformin to try a different drug. I told her if she tried, I would find another doctor. I think that Metformin has kept the UPSC from coming back (in addition to my hair - LOL). I'm not there yet but September 30th will be five years. If I make it, I'm planning a big celebration. Back when I first found out I had cancer, I read the statistics and figured I'd be dead within two years. But....here I am, fat and sassy and loving my retirement.  It's not that I don't think about it coming back but if it does, I've sure had a good time in the meantime. 

Love,

Eldri

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

I remember you saying about how you are eating, was it Chocolate Mint Ice Cream? Sorry to hear about your A1c. Mine is borderline, mostly due to the cholesterol medication I take. You give us diagnosed later lots of hope. I am 15 months NED. Keep on enjoying life! 

Denise

janaes
Posts: 800
Joined: May 2016

You guys are all still here and thats great. This group is so needed for so many people. You know i was thnking hoe 3 resrs have gone so fast. I am really glsd i made it this far. Our time is so precious.  

Im glad im not the only one who thinks sbout rescursnce once in a while. So ya ive had two cat scans in the last three yesrs. it makes me wonder what the docs will do now. I almost hope i have one not to far away. I guess my eorst fesr would be thst csncer would come back and i wouldnt know it.

Oh well im still here and thats good. Cant worry about the future too much.

Ss i daid before thid boeard is s Gem for so many

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hey Ladies!  As I contemplate my 6 month CT scan, even with the 2 wars and travels I've been through I'm thankful to be here 4 years since being diagnosed with Stage 3, grade 3 adenocarcinoma. My major annoyances now are dealing with my pee bag and trying to control my diabetes which is as a result of the Megace. It's been all over the place lately. Hopefully no surprises on next week's CT scan. 

Fridays Child
Posts: 211
Joined: Jul 2019

CheeseQueen, if you don't mind saying, how long after you started taking the Megace did the diabetes develop?  I've been on it about six months and have lab work coming up soon and am concerned about what it will show.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I would say my A1C crept up over about a year.  I also gained 20 pounds. My advice is to have them check your A1C every 3 months and don't let them minimize it if it gets too high. Treated it immediately. I worked in the diabetes area for 10 years and despite surviving cancer, you don't want diabetes complications. Just keep an eye. 

Fridays Child
Posts: 211
Joined: Jul 2019

Thank you.  So far I've managed not to gain weight.  As I have not (yet) achieved NED, I hope to avoid any additional complications.  I know you've had a rough time and hope you can be well and happy!

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

I think all the time about the future.  I will be 1 year post treatment March 5, chemo and radiation, I think about recurrence or beating the odds and remaining NED.  I try not to dwell on it and live my best life, but, the thoughts are there.  Thank you Janae, for sharing your thoughts.  Thank you EZLiving, as well, I love your "Samson" hair.  Don't ever cut it.

Linda

janaes
Posts: 800
Joined: May 2016

Ok friends,

I thinking of this as a good thing but it some truth that i probably need to hear but is really not that great of news.

Ever since this thread I started i have been of course living my life but also have been doing some research. 

Almost 4 years ago when i recieved news from my biopsy that i had uterine cancer i felt very alone because this was my second cancer at age 45. I felt so young and alone. I found this site and was able to get my anger out and also posted a bit on the Hodgkins Lymphoma section of this site. I got some good info and there were a few here who had more than one cancer. I felt a hole lot better. I was able to make it through of course.

The research i have found recently has been on my fist cancer (hodgkins deasese) and the effects of that treatment. With the talk of the carona virus resently i read about that. I had been looking for more support from others who had Hodgkins deasese years ago like me. I finally found some support and people who have had complications and second cancers because of Hodgkins deaease treatments. So i am happy i have found others but the information is a little hard to hear. I wont go into all the complications but its motivated me to be a bit more pro avctive. I plan on talking to my oncologist and my primary care doctor about this so i can make sure i make good choices with my health as i go forward.

Thank goodness im in good health now. So thats just it finding this info out and finding others just might help me keep it that way and be more motivated to do so. It kind of stinks though and I am still trying to stay centered and still enjoy life.

Thanks again every one

Just wanted to share what i was finding. I hope you gals dont mind.

cmb's picture
cmb
Posts: 679
Joined: Jan 2018

Janaes,

When you talk with your PCP and oncologist, do consider asking them about having some genetic testing. While the uterine cancer may have occurred as a result of your earlier cancer treatment, I know you also had to deal with skin cancer recently too. Three different cancers is really a lot!

While I wasn't happy to learn that I had a genetic mutation that predisposes me to some cancers, at least I know that I must be proactive in having certain tests regularly to try to catch a new cancer early. Given how young you are, I think this would be very important for you to know too, if you had one of these mutations.

Of course, with all the current coronavirus stuff going on now, it may be a while before you see your doctors. But keep my suggestion in mind for when you do.

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