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Has anyone else been over 20 years before a recurrence?

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Sometimes I feel like a freak having been 22 years in remission. Don't get me wrong, I am grateful for every day and I know that many wish that they could have that long of a remission.

However, I have not bumped into one other person who went that long before a recurrence. I asked my oncologist about it and he said that it is not unheard of, but he didn't mention any names. If you are out there, please let me know.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I know several on here had recurrences Cynthia, but, I can't remember how long it was for them. These are the ones I remember that might have had a long time between their original diagnosis and I hope they will post to you. RE, Kathi M, carkris, Meena and Jeanne D. I think a couple of them went a long time, but, not sure.

Wishing you good health and good luck!

Megan

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Thanks. I hate to even mention how long my remission was, as I don't want to scare anyone. But I do sometimes feel like I am the only one.

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

Good, bad or Ugly. Breast Cancer or Cancer in general is now a part of our everyday lives - It is scary, if we allow it to be. I still lose sleep thinking about cancer and the odds of survivorship .. then I remember the strong willed, spirited women who have walked before me on this very same journey - and all that they have accomplished and are here amoungst us .. SURVIVORS! I am at peace, until the next influx of statics and clincial trial information is splashed in the media or on-line.

Vicki Sam

survivorbc09
Posts: 4378
Joined: Jun 2009

You aren't the only one Cynthia. Like someone wrote, there are several on here that had a recurrence that went many years. It is scary, but, it is something that is always in our heads. Praying for all bc sisters!

Jan

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

When I had my last recurrence, I wrote to a lady who was diagnose in 1975 just short of her 40th birthday.

Her 1st recurrence came 9 years later, a regional one in her axilla in 1984. Radiation and Tamoxifen.

Her 2nd recurrence came 15 years later, metastasis to her bones. She used Arimidex.
Her 3rd recurrence came 8 years later to nodules in her lungs. She used Faslodex which failed . She was no longer hormone positive. She went on using many different chemotherapies and tried a trial which failed.

She died 34 years after her original diagnose of breast cancer and ten years after learning of her bone metastasis. She was 74 years old.

This lady I knew. I've read many stories online, and in articles that some do live a normal life span. It's not the norm, but it does happen to some.

SIROD

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

My breast surgeon did tell me that, although it is unusual, for some cancer is a chronic condition. He said that it can't be cured but may be managed and may not even be what kills me. Who knows? The longer I live, the stranger life seems!

Bella Luna's picture
Bella Luna
Posts: 1570
Joined: Aug 2009

Cynthia I know of two women. My friend Sherry was diagnosed with breast cancer in her mid twenties. She is now 55 and is still cancer free! I met this other lady at the chemo clinic. She is a spry, spunky woman in her late seventies. Her recurrence occurred 30 years later! She had breast cancer and had a double mastectomy. A new cancer came back in her GI tract.

They are out there. It is so reassuring to hear from Survivors like yourself who have been dancing with NED for over 20 years! It gives us hope. Thanks for sharing with us.

I certainly hold those dear Sisters who are, once again, battling the beast up in prayer.
BL

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Thank you for saying that I give others hope as I feel bad that I have to share that I did have a recurrence after so long. I know most could consider themselves cured and I am just a big weirdo. But I thank you for the story about the woman who had been 30 yrs. It makes me feel less isolated.

Miss Murphy's picture
Miss Murphy
Posts: 302
Joined: Feb 2010

I also know two women who are past the 20 mark with no recurrance. One was in her late 30's when dx and is now around 60 - her daughter was in my Girl Scout Troop when dx. She's doing great and just danced at her daughter's wedding! The other lived on the street in back of me and was early 40's when dx and she's now about 65 and enjoying her grandkids! Oh and I just remembered a lady in my bridge group - she's in her late 70's and I know she had bc many years ago - it must be at least 20. When I get down I think of them and that gives me lots of hope and I'm keeping my fingers crossed for 20 plus years! You also have given me hope Cypress Cynthia and I'm sending positive thoughts your way.

Hugs, Sally

GayleMc
Posts: 311
Joined: Jan 2010

Cypress, you definitely give me hope with your story. We all know we can have recurrance at any time, and it means a lot to me to know that you share your experience with us who hope it doesn't happen but if it does, we can fight. I truly wish you the best.

2Floridiansisters's picture
2Floridiansisters
Posts: 361
Joined: May 2010

I don't know of anyone personally that even has cancer besides these ladies here on this site, I pretty much am a loner and don't really have any friends so I know nobody out there, I am also not real close to any family members. I would hate to have a recurrance but if I ever do I sure want it to be at least 20 years out, heck yes add my name to the list of posters you give hope to. Absolutely, none of us want to experience this but look at how long you've been in remission!!! That's good, although I am sorry that it has come back. Stay positive, you beat this once and you're strong enough to do it again. You are in my prayers.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I agree Gayle. We do know that it can happen, and, it is good to read of other's experience. Keep fighting and living your life!

Hugs, Leeza

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Don't feel bad Cynthia for sharing this. If anything, it might make all us more aware that it can come back to where we are more aware of something that might not be right. I remember Meena posting her story and I certainly learned from it.

Wishing you a healthy life!

iowasignterp's picture
iowasignterp
Posts: 55
Joined: Aug 2010

My mother in law had cancer in one breast, three years later the other breast, and then 19 years later again in the original breast. So 19 is a year shy of 20 but close. She had lumpectomies, and then mastectomies after discovering she was BRCA positive. That was around three years ago and she is still doing fine although she had to have the back flap surgery because the radiation made it tough to heal from a regular reconstruction. We thought it was odd that I was diagnosed, about six months later her daughter was diagnosed, and then a couple of months after that she was diagnosed with her recurrance. We were all doing the breast cancer thing within months of each other.

So yes, 19 or 20 years is not quite as odd as you think.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

A recurrence is all of our nightmare. I am sorry it came back to any of you and your loved ones. Wishing you good luck and praying for all of you!

FIDDLEPHYL
Posts: 2
Joined: Aug 2010

I had cancer 21 years ago. They did a needle biopsy as it was in encapsulated in a duct. Ended up having it done a second time.
This past June I was diagnosed with cancer in both breasts. Had a bilateral mastectomy in July. So I was free of cancer for 21 years. My surgery went well and no cancer in my lymp nodes. Am still recoving. Best of everthing to you.

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Weird huh? I went 22 yrs in remission and all of my physicians had dismissed me as not needing them anymore. Hope you do well too ! Keep in touch; not that I would wish this on anyone--but it is nice to know that I am not alone. Thanks so much for writing.

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

We need to know everything. Great that you went 22 years but sucks that it returned. However, think of how much more advanced the treatments are now with much better results. Time to put that warrior helmet back on and kick this beast's butt again--you can do it--you already have once.

We're all pulling for you, girlfriend.

Hugs, Renee

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

my aunt was around 40 when she had a radical mastectomy w/cobalt treatments. Wow, it was radical, huge cavities in her chest and under arm. No lympedema and no recurrence and she is 85. No cancer ever in her other breast.

Bella Luna's picture
Bella Luna
Posts: 1570
Joined: Aug 2009

Someone else comes to mind Cynthia. Julia Childs lived into her late 80's, I believe, with no recurrence! They are out there.
BL

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I think it is good to remember, that most posters on these types of boards are those with current health issues. There are many that are doing well that never seek out discussion boards so we never hear about them. We are getting just a small window of all the survivors out there.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I think you are so right Cathyp. A lot of the women don't post here anymore as they finished their treatments and have moved on with their lives.

Good luck to everyone!

Hugs, Angie

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

I wasn't asking about who never had a recurrence though. I was asking who DID have a recurrence after a PROLONGED time. My recurrence was after a 22 year remission.

PinkPearl's picture
PinkPearl
Posts: 280
Joined: Oct 2010

before her cancer reoccured. Her first breast cancer mastetomy was done in 1975 just after my first child was born! They did a radical mastectomy but could not follow up with chemo because of her severe asthma. Last year she had a cancer removed from the other breast and now one year later at 86 she is still doing well. Some think it is a second different cancer but my own breast surgeon says since my mother never did chemo or radiation the first time around this could be a reoccourance. She is one amazing survivor! Despite 3 of her daughters having breast cancer and losing one daughter to breast cancer this past August and losing another daughter many years ago to severe asthma, my mother is still a trouper and I am so proud of her. Now I have been diagnosed with BC just two weeks after losing my sister to this dreaded disease and my mom has to go through all the worry and stress again. But I think her 35 years of surviorship should give us all tons of hope!!! God only knows how our bodies will react and all we can do is fight cancer the best way we know how.
Best of luck to you!
Merlyn

dee1962's picture
dee1962
Posts: 99
Joined: Oct 2010

I was first diagnosed when i was 31. I had a lumpectomy and 3 nodes positive....chemo and radiation then tamoxifen for 5 yrs......went 17 years july 2010 went for checkup and boom stage iv mets.....omg i was and still in shock....started chemo 3 weeks ago and i take it one day at a time.. The difference this time is that's there's no cure this time around so i get down on myself which is why i signed up for this chat it makes me feel better and i'm don't feel so alone.... So we have to keep our chins up higher this time around.....I wish you and everyone on here all the BEST....Dee

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

It sucks that we thought we were done but we're not...sigh. But I figure I've got at least another 22 yrs of fight left. As my nephew (then 4 yrs old) used to say, "I will nevuh suwwenda!" Keep fighting Dee and let's beat it together!

dee1962's picture
dee1962
Posts: 99
Joined: Oct 2010

lol it really does SUCK....Yes and together we can do it.....

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

And 3 and a half years ago she was feeling tired and run down and went to see her Onc, and had a pet scan and found it on her plura of her lung.
Had biopsy to confirm, and now she has been on femara and the tumar has shrunk.
As far as I know she will be taking this drug till who knows when.
Side effects sucks.
take care all Karie

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

A woman who lived in our building was more than twenty years out from her original diagnosis and treatment. Currently (I still bump into her), as far as she knows she has had no other reoccurrence or other cancer.

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