IDC LONG TERM SURVIVORS?

idaho

Anyone out there that is a long term survivor of IDC?  We would love to hear from you, and your story.  We need all the encouragement we can get!  I realize that most survivors are not checking these boards because they are out living their lives.  But a few stories would be so uplifting!  Thank you, Tami

rdrake0

This is an awesome idea!  Thanks for coming up with it, idaho!

Please add your treatment regiment, too!

mmm5

My Stepmom is here visiting me for 10 days and helping through a difficult time one year anniversary, scans, Herceptin etc just needed support. She has never been part of this forum but wants to post so I am typing for her!

She is a 14 year survivor of IDC stage 2, her sister is 22 year survivor of stage III (9 positive lymph nodes). Her best friend who was part of her support group is a 5 year survivor of stage II)

She helps me daily with the fear, she had AC treatment, 5 years of Tamox, and 7 years of Arimidex.

lexislove

My aunt was diagnosed with BC in 1982 at the age of 64. I was only 5. She had both breasts removed all of her lymph nodes under her arm gone. She had NO chemo and NO radiation, and probably no Hormonal meds.She suffered from severe Lymphadema. At that time I did not know why her arms were so swollen being only 5, but now I know.

After I had my mastectomy, my mother told me that my aunts scars were horrid and mine was nothing to compare.

My aunt passed in 1996 at 78..........of Alzheimers Disease.

everyminute

check out the success stories thread - I will bump it up for you!

anianiau

My mother had a modified radical mastectomy for IDC in her late 50s. No chemo, no rads. She died (of a heart attack) at the age of 81. Apart from mild lymphedema on the affected side, she experienced no additional problems.

The woman from the ACS who visited me before my bilateral mastectomy was diagnosed with IDC more than 15 years ago. She had multiple positive nodes. Her unilateral mx was followed by chemo and rads--and she's had no recurrence, still NED. Awesome lady.

idaho

Oh thank you ladies!  Does my heart good to hear these stories! I was dx'd Feb. 1, had a lumpectomy and am two weeks into radiation.  No chemo, but am going to take tamoxifen.  Thank you again- hope to hear more wonderful successs stories!  Tami 

rdrake0

Tami - are you post menopausal?  I am. Had lumpectomy in Dec, re-excision in Jan, then rads but no chemo.  Now Arimidex.  Something suspicious in my liver.  Don't know what for sure yet.

rdrake0

Love those stories!  Keep them coming.  Hope is everything!

Anonymous

Whenever I am weeping in despair over my tiny little IDC lesion, I think of my aunt, Patricia McNamara:  double radical mastectomy in 1963 while pregnant.  Lost the baby but survived her first round.  She fought through a nasty metastatic recurrence in her spine about 8 years later, and credited her survival to the Simontons, who pioneered the use of visualization against cancer in the 70s.  She was a miracle case - I remember seeing my aunt on the Today show when I was a kid!.  She had a third recurrence in 2003, in her late seventies.  Not a bad track record, and an inspiration to me as I tell my breast cancer that it's about to be homeless. 

idaho

rdrake- I am pre-menospausal, about to become post though.  Love the story Kaidog-Thanx for the inspiration.  Tami

sherrilynne

My mom had a mastectomy 30 years ago with no chemo or rads and is 76 years old today in good health.  I just had a lumpectomy and will start chemo & rads soon.  I am wondering if I should have had a mastectomy instead of lump.  Is the survival rate the same or diff?   Does anyone else have any thoughts or insight to this?  Thanks so much!!!

Curlylocks

Hi Tami,

I will be a 4 year survivor of IDC in October.  I had a lumpectomy, 6 mnths of chemo (4 a/c and 4 taxol), 5 1/2 weeks of radiation.  Was pre-meno when diagnsed at age 41, oncologist put me on Zoladex injections and Armidex.  I have been on Armidex for 3 years and had my ovaries removed a year ago so dont take the Zoladex injections anymore.

I had a 4 cm tumour, grade III, 3 positive nodes...pretty scary crap but I am proof that you can and will survive this!

Michele

MarieKelly

I was diagnosed in 2/2004 at age 49 and already in menopause with a small (1 cm) tumor that was a mixture of 60% grade 1 IDC and 40% grade 1 DCIS.  Had a lumpectomy, single node SNB and biopsy track removal done in 3/2004 and then no further treatment at all - refused ewerything else.  So, it's now been 5 years with no further problems. Just had my 5 year mammogram on Saturday morning and now waiting on the official radiologist's report but the mammographer said she saw nothing there.

Anonymous

Hey Tami!  My aunt was a battleaxe - she was with me in my MRI yesterday, I swear.  We all have access to incredible treatments these days! 

If y'all haven't already gotten it - Crazy Sexy Cancer is my ultimate inspiration!  Stage IV liver cancer at age 31, with no real treatment options - and she's going strong.  Check out her trailer at her website, crazysexycancer.com.  The language can be a little rough if you're offended by that kind of thing, but she blows me away.

Hugs to all,

Laura 

charleneg

My oncologist said overall they have not seen any significant difference in the mastectomy versus lumpectomy now.  I go to the University of Colorado Anschutz Cancer Center and they are up on the current research.

Charlene

Gez052

I decided on having the offending breast removed although I was offered a lumectomy. I asked the surgeon if he was offering me a lumpectomy because my prognosis was pretty good?( any crumb of hope ). At this stage we had biopsy results which seemed to indicate the cancer was grade one.

His answer was that it was a matter of personal choice and the survival rates were pretty much the same - roughly 50% survival overall, including all grades and age groups. IF you had radiation with the lumpectomy that is!

The benefits of mastectomy were: avoiding radiation treatment and a "slightly" better outcome over 5% years. What did that mean exactly? He said that each year over the five years there is a 1% increase in mortality in the lumpectomy group. I still didnt get it, so he said in year one, one woman out of 100 will die of breast cancer and the next year that will happen again and so on. In addition to the mastectomy group.

When pushed he finally said if he were advising his sister, he would tell her to go for the mastectomy. I went for it. Especially as he was determined to take out all axillary lymph nodes regardless. Hope that clarifies if not exactly 'helps'

Geraldine

jeezy

Well I'm a 12 1/2 year survivor of Stage III, ER/PR- IDC 1/12 nodes, Left Radical Mastectomy 5cm tumor.  I've done really well until my most recent mamogram where they found a new primary cancer which has turned into Stage II, ER/PR-/HER2+ 0/1 node and normal PET Scan, Right Simple Mastectomy 3.2 cm.   I've just started chemo so I know that you all can beat this and I plan on doing it the second time around too!!  Hang in there and let me know if you need me...Jeezy

Julie76

In Sept.I start my 10th year of surviving.And I see the Grade in everyone's sigs.Don't know mine for certain.I will have to ask my doc when i see her in June.But she mentioned something about teetering between a 2 or 3,might have been the grade.Cause I have some of my reports and it says stage IIB but doesn't mentiona a grade.So must have been the grade she was referring to?

rockysmom

I met a gal just today who is celebrating 20 years- she was diagnosed at age 24 and is doing just great!

trk_koa

I'm 3 1/2 years out. Saw my radiation onc last week and he told he to have a mini celebration since I've made it out this far without a recurrence.

I had lumpectomy, re-excision to get clean margins, 4 x DD EC, 33 rads, 12 weekly Taxol/Herceptin and the balance of a year of Herceptin. I did have an excisional biopsy on the other breast last October which was benign.

Doing fine but still have the 20 pounds I gained on chemo. That's my next challenge.

I know a woman from a local support group who is a 30-year survivor. She truly inspires us, especially the newly diagnosed.

Dawnbelle

I had two lumps removed Monday & was told over & over it was fibrous & it was nothing. The surgeon only removed the masses because of cosmetic reasons, you could see one through my skin....

He called at 5:30 last night & told me both masses he removed were IDC(He had no other details, the report was at his office & he was calling from home). He apologized for being so wrong & I have to be in his office Tuesday at 9am...

I have been reading these threads for info. since midnight & this thread has given me so much hope. Thank you so much for sharing the happy stories.

Dawn

reen

Best of luck to you dawn.  you'll get through this like all of us did.  Please keep us posted. I'll be thinking of you.

fairy49

Dear Dawn, these boards really are a life line, try not to worry too much, we are all here thinking and praying for you! Please keep us posted! You WILL get through this!

Peace sister,

Lorraine ox

thegoodfight

It almost 11 months since my diagnosis.  I had a lumpectomy with clean margins, but followed by a second surgery two months later when another primary cancer was found in the same breast in another quadrant.  I did chemo (even though my onco was 17), radiation and I am now on arimidex.  I had a clear SNB

I had been told and I have found it to be true that the waters are difficult to navigate once you have finished the primary treatments.   I worry.  I know that my stats and treatment decisions say I have an excellent chance of no recurrance.  But lately I have heard too many cancer stories.

That was until yesterday.  I was out shopping, really just aimlessly walking around looking at clothes.  I stayed much longer than I wanted and finally went to the register to pay for a few things.  There I met an "angel".   A woman and I started talking........................she is a 35 year survivor, being diagnosed at 33.   I don't know the specifics of her situation but I know she had a mastectomy and nothing more, no other treatment.   This was what they did 35 years ago.  But here she was............to show me that many women do survive.

I know that it is no accident that I found her yesterday.  We connected and we will stay in touch.    She is an inspiration for me and hopefully for many of you.  THERE ARE LONG TIME SURVIVORS OF IDC!

Caren

caearl

it has been nine and a half years since i was diagnosed with IDC.i was 66 years old. my last mammo was in Feb., i had a surgical biopsy in sept., and a modified radical in oct.thirteen positive lymph nodes were removed so i was a stage 3b, triple negative. after my first chemo, i found a lump in my neck. it was positive so that put me in stage 4. needless to say i was terrified. my onc kept reassuring me that since my parents were in their eighties i came from good stock and would probably live to be one hundred.i also decided that since we never know when our days are to end it was not worth wasting time stewing, instead put that effort into making the most of each day.

right now i am dealing with delayed radiation plexopathy. something that affects 1 in 10000 of us. i do keep reminding myself that if i had not had the radiation i might not be here. so keep a positive outlook. i know it is hard when going through chemo and feeling miserably, but if it is making you feel that bad think of what it is doing to those nasty cancer cells. i will keep you all in my prayers.    connie

LizM

I was diagnosed with stage II IDC mixed with ILC.  I had one positive node.  It will be four years in October.  I had bi-lateral with immediate reconstruction, chemo, rads, oophorectomy and am on Femara.  So far so good.

vision4utoo

Fariy49:  I wanted to ask if you had only did the TE's with implants?  I am thinking of going that route - afraid of the more invasive surgeries of Tram/Diep and just plain tired of doctor rounds.

vision4utoo

Dawn - in my prayers, I actually had very similiar experience.  My surgeon kept assuring me that 80% of tumors were benign and he was sure that all was okay.  I will never forget waking up after the biopsy, the way he was standing like a little boy who didn't know how to tell the truth - he at that time just said it looked good, "slippery" as a good sign an then I got the phone call...there were two lumps, he took both, both individual cancers... I am wonderful 1 year out - after mast., chemo, now reconstruction.  Keep the faith, good spirits - fear is the mind killer.

marmsie

I am 9 years out from my first diagnosis. That one was:

Dx 1/24/2000, IDC, 2.1 cm, Stage IIa, Grade 3, 0/22 nodes, ER-, PR-, HER2-.

Knock on wood (I do every time I say this), no signs of that one. Treated with lumpectomy, 4 rounds of A/C and 7 weeks of radiation. That one was a 9 out of 9 on the Nottingham scale, so not a lot of wiggle room on that one.

The latest is in the same breast, but every indicator points to new primary. Specifically being ER+ and MUCH less aggressive (thank you thank you thank you). Gonna beat this one too.

maltomlin

Hi all



My mother-in-law is 50 years out! She had a mastectomy and 'radium' therapy and just thought it was like having a cold, and that she was cured. She's fine now at 86. I'm 1 year on and find her an inspriration.



Mal x