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Well I Guess I am Going To Join The Long Term Survivors Group

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Hello,
my name is Paula. I have had a Stage I breast cancer 20 years ago, Stage I breast cancer 4 years ago, Stage I breast cancer 3 years ago, and Stage 2 ovarian cancer 2 years ago. All primaries. I mostly hang around on those boards, but 99.9% of those people are in active treatment or have had re-occurances. I am NED and feel great at the moment. That is subject to change anyday. I am looking for people who have had multiple primary cancers. I want to see how you are doing. I have the BRCA gene, which causes the female cancer's. Hope to hear from someone like me soon. Thank-You.

KathiM's picture
KathiM
Posts: 7949
Joined: Aug 2005

Stage III rectal followed by stage II breast....

More than likely genetic....HNPCC...but haven't been tested...my grandfather, mother's side, died from colon cancer, my mom has had endometrial and breast cancer, I with my 2, and my full-blood sister with anal cancer...

We ladies are all very much alive and kickin'...but if you check the boards, you already know that...

Congrats on the NED!!!! YEA!!! Me, too...almost 5 years...no reoccurance so far on either....

Hugs, Kathi

fauxma's picture
fauxma
Posts: 3565
Joined: Dec 2008

I have had 3 primaries, endometrial cancer 11 years ago stage 2B, bladder cancer 9 years ago stage 2, breast cancer 2 years ago stage 1 and several skin cancers (squamous and sebeceous). Mine is genetic, HNPCC or as it is sometimes called Lynch Syndrome with a Muir Torre subset which explains the skin cancers. They have all been caught early, treated and have had no recurrences on any of them. Like KathiM, I too am very much alive and kickin' and she is a real firecracker for sure. I am also NED on all of them. Because of the HNPCC I have an increased risk, 60 to 80 percent, for colon cancer and some other cancers but they do frequent testing so they would be caught early. Hopefully that won't be happening but I have fought this before and if I need to will fight it again. KathiM is very inspirational in her fights with cancer and she is also very funny, entertaining, and sweet as she can be.
I think that there are several others that have had multiple primaries. I consider myself a long term survivor and I intend to stay that way, knock on wood.
Stef

KathiM's picture
KathiM
Posts: 7949
Joined: Aug 2005

I forgot about you being HNPCC....do you think I should do the test?....I am having a bit of trouble convincing my docs to keep following me...."You are past 5 years, no more worries" is what I often hear....so now my insurance is starting to deny scans as 'unnecessary'....sigh...

I'm dancing for you, my dear....and very honored to call you family!

Hugs, Kathi

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Hello Kathie,
I had genetic testing done. It cost $3000.00 out of pocket. My insurance company would not cover it. I figured I was BRCA positive because my mother died of late stage ovarian cancer and my 89 year old grandmother has had Stage I breast cancer about 5 times. I think people with multiple primaries do better, because they are watching us more closer and we are watching our bodies more closer. Can I be in this family also? We are strong. Luv You, Paula
Also, I get a breast MRI every 6 monthes and a CT scan every 6 monthes and a CA125 blood test every month. The blood test is for ovarian cancer.

KathiM's picture
KathiM
Posts: 7949
Joined: Aug 2005

I heard about the expense...and I surely will need to self-pay (I have and HMO).

I guess I'm feeling a bit neglected by my treatment team....I DO get yearly Mammo's and breast MRI's....but nothing really for the rectal cancer...and there isn't alot of guidelines after 4 years...pretty much 'what your doctor orders'...which, in my case, is not much...

I don't let it stop me, tho....I am living in America and The Netherlands. Change every 3 months. And cruise whenever possible...and well, just am storing memories for the day to come when I can't do much anymore...and my beau of 19 years has congestive heart failure, so we both have learned that our 'someday' is right now...

But, that's a whole other sob story, and I don't dwell on it much....wrecks my positive attitude (ROFL!).

Welcome to the family that no one, given the choice, would have wanted to be a part of...lol!

Hugs, Kathi

fauxma's picture
fauxma
Posts: 3565
Joined: Dec 2008

I was torn about the testing so I did a pros and cons list.
Pros
more diligent testing for cancers that are a risk
catching it early should it show up
knowing what I am up against
if I didn't have it the relief that it would bring (that one didn't work, did it?)
knowing that my child would be warned and on the alert for any of these and could start tests at an earlier age
cost for the testing was $10 through our health carrier
Cons
Increased worry that a new cancer would pop up
Worry that if I had it my daughter might have it and if she did, worrying about the grandchildren
Worry that if I had it my siblings might and I would have to tell them
What if I lost my health coverage and I couldn't get new coverage?

When I looked it over, for me, it was a no brainer. Like I don't already worry about a new cancer. And wouldn't my daughter and siblings be better off knowing so if they had signs they could get treatment and they could be tested and forewarned. And with so many cancers, who the heck would give me coverage anyway. LOL So I did the testing and for me it was a relief. It explained my many times at bat and now I have early endo/colonoscopies/cystocopies/skin exams and anytime I have anything that is symtomatic I will be given the appropriate tests right away. My brother was tested and doesn't have it so that was great. My sister who has no children opted not to be tested but has told her doctors that it is in the family so they are watchful. Denise will be tested when they have adequate insurance but she knows that if she has any indicators of any of the cancers not to delay and she can tell them that I have this and they will do tests that they might otherwise wait on. You have a daughter and if you are tested and you carry this, then she can be tested and she will be able to start preventive tests. They will start colonscopies/endos and other tests and do them early. They may not be pleasant but they certainly do the job. I can't say whether you should or shouldn't but I don't regret having done mine. Forewarned is forearmed. And if you are tested and do carry this, trust me they will not deny some of the scans and tests that they are probably denying now.
I hope you don't carry this, but as you have said with your personal and family history there is a strong potential you do. I did not have much in way of family cancers in my background but then my dad's side was sketchy at best and he died at 48 of a major coronary so who knows if he carried this. His dad died of stomach cancer and that is one of cancers that can be triggered so maybe it was on that side.
You are truly one of the lights on this board. The reason for being here sucks but the friendship are precious.
Stef

Lisa_R's picture
Lisa_R
Posts: 56
Joined: Oct 2009

Hey I am not what is called a long term survivor. My remission started february 23 2010. I was just trolling the neighborhood hopeful to get there someday. But I do think if you've survived cancer for any period of time..its a long time... Anyways I too have a family history of cancers.. personally colon st 4 & endometrial st 1 grade 1.. I am also interested in others like me & am wonderi.g about other cancers to be aware of... I am.doing all the tests I can do.. anyone have a list?.. anyways thanks for letting me I am not alone...

Smiles
Lisa

KathiM's picture
KathiM
Posts: 7949
Joined: Aug 2005

...not so much from the HNPCC...but it seems these days that we 'lucky' ladies with other female-related (or potential) cancers seem to win the prize for breast cancer, as well...

I did...stage III rectal (nonpolyp), stage II breast...not tested for lynche...grandfather passed from colorectal, mom (his daughter) endometrial and breast cancer (survivor), me, rectal and breast, my sister, anal...I tell my daughter I'm sorry for giving her a septic tank for a genetic pool!! ROFL!

Hugs, Kathi

Lisa_R's picture
Lisa_R
Posts: 56
Joined: Oct 2009

Sounds like u r a good candidate for the lynche.. my dad had rectal cancer st 1 5 yr clean..grandma colon..most of my aunts had their lose.parts removed for various pre cancer stuff... mom died lung cancer & grandma on her side had bone cancer of some kind

Hondo's picture
Hondo
Posts: 6085
Joined: Apr 2009

I had NPC cancer three times, the first time was in November of 2002 then it came back again in December 2003 and again in March 2006. In 2002 I was told I had a 98% chance of being cured, did not work, in 2003 it went down to only 20% chance of being cured, need I say anymore about 2006! I am still here today and looking forward to March 2011 that will mark my 5 years of NED.

All the best to you in the New Year coming
Hondo

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

I was wondering what kind of herbs you used. I am looking for other methods to treat the cancer if it comes back. I have already changed my diet. I have a problem staying away from cookies. I do prepare all of my own food and grow a garden in the summer. I think it is all about building up the immune system and not putting garbage into our bodies. Thank-You for your post. Paula

Strawgirl
Posts: 9
Joined: Nov 2005

Hi Paula,
I am a 55 yr old female from Canada. I was 36 with my first cancer, stage 2 ovarian in 1991, Stage 3 breast in 1998, the one that has its' grip on me now is stage three non-small cell lung in 2006. The lung cancer is inoperable I did chemo & rads, finished in 2007, the doctors gave me 2 yrs and here it is 4 yrs later.

I have struggled with depression constantly. All my hobbies and interest have gone, as I know I'm on borrowed time. Anytime I get a pain or my body goes through any change, I am always wondering........Is this the beginning of the end? Feel free to asked me anything!

I wish you all the best

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Perhaps you should consider therapy, strawgirl? It seems like such a waste to have gone throgh all that you have endured without enjoying the benefits, one of which is more time on this lovely planet surrounded by those you love, doing the things you love.

You have earned it, and maybe with some help, you can find some joy.

I wish you the best.

Take care,

Joe

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