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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Frequency of colonoscopy

Topic: Frequency of colonoscopy

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jan 6, 2012 03:56PM

wallycat wrote:

Hi gals!

I'm curious if anyone else has been told every 5-years for colonoscopy instead of the 10...due to breast cancer, not specifically lobular.

I sooooooooo don't want to go...sigh.

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Posts 1 - 29 (29 total)

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Jan 6, 2012 04:00PM coraleliz wrote:

Not mentioned to me (yet?). I have a family history of colon CA & had a benign polp removed when I was about 30. I think I'm still on the every 10year plan.

Dx 2/28/2011, IDC, 1cm, Stage II, Grade 1, 2/4 nodes, ER+/PR+, HER2-
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Jan 6, 2012 04:08PM MadisoninMd wrote:

While it doesn't replace a colonoscopy, ask your doc about Colovantage. It's a blood test that can be used to detect colon cancer in patients who either can't or choose not to undergo a traditional colonoscopy. No prep necessary, just a blood draw.

Dx 10/7/2011, IDC, 3cm, 0/4 nodes, ER+/PR+, HER2-
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Jan 6, 2012 04:18PM CamilleL wrote:

My oncologist orders periodic CT scans of my entire torso, so I don't need any colonscopies---any lesion in the colon would show up on the scan.  One nice thing about getting the scans!

Dx 1/29/2011, ILC, Stage IV, mets, ER+
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Jan 6, 2012 04:28PM ruthbru wrote:

Yep, I'm on the 5 year plan. They are not bad at all.

"Invisible threads are the strongest ties." Friedrich Nietzsche

Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jan 6, 2012 04:30PM JudyO wrote:

Just had my second colonscopy...first one was clear but I was told with breast cancer they now put you on a five year plan.

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Jan 6, 2012 04:41PM J-Bug wrote:

How old are you when they traditionally start? Isn't it 50? I had my first "routine" mammo after I found my lump...

Age 40 at diagnosis.

Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2-Chemotherapy 07/01/2011 Adriamycin, Cytoxan, TaxolSurgery 11/09/2011 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Both)Radiation Therapy 01/10/2012 ExternalHormonal Therapy 04/13/2012 TamoxifenSurgery 08/22/2012 Reconstruction: DIEP flap (Both)Surgery 12/11/2012 Reconstruction: Nipple reconstruction (Both)
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Jan 6, 2012 04:44PM 2timer wrote:

Just had my 2nd one last month and I am now (happily), on the 5 year plan.  They found several poyps the first time and I was told to come back in 3 years.  The last one was clean (one non precancerous polyp), so I can go 5 years.  I got the first one due to elevated risk because of the bc.

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+Dx 7/2/2013, IDC, 1cm, Stage IIa, Grade 3, 1/9 nodes, ER+/PR+, HER2-Radiation Therapy 06/26/2007 ExternalHormonal Therapy 11/01/2007 TamoxifenSurgery 08/28/2013 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Reconstruction: DIEP flap (Both)Chemotherapy 10/24/2013 Adriamycin, Cytoxan, Taxol
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Jan 7, 2012 09:49AM Galsal wrote:

The five year plan for me wasn't due to breast cancer but instead due to my Aunt having died from colon cancer and one polyp found on my last scope.  Plus, I'm over 50 now.

Dx 12/14/2011, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-Surgery 02/10/2012 Mastectomy (Left); Prophylactic Mastectomy (Right)Hormonal Therapy 03/10/2012 TamoxifenSurgery 07/09/2012 Reconstruction: DIEP flap (Both)Hormonal Therapy 10/06/2012 ArimidexHormonal Therapy 12/13/2012 FemaraHormonal Therapy 04/16/2013 AromasinSurgery 07/15/2013 Reconstruction (Both)Surgery 08/16/2013 Reconstruction (Right)Surgery 02/13/2014 Reconstruction: Tissue expander placement (Both)
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Jan 7, 2012 09:53AM, edited Jan 7, 2012 09:54AM by deborye

I have to go every 5 years because 10 years ago they found a polyp and a year ago another polyp so my next colonoscopy is in 2016.  I turned 60 in Oct.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm

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Jan 7, 2012 04:46PM Leah_S wrote:

I'm also on the 5-year plan, and like Galsal it is due to my aunt's death from colon ca, not from the BC.

I'm going to find out about an alternative prep next time. I had the one where you drink about 4 liters of whatever-it-is and I got very sick from it. I passed out, felt overwhelmingly weak, and also barfed. I have to say, I am 61 and that was the first time IN MY LIFE that I threw up. I've heard there are pill-type preps but they are hard on the kidneys so I'll look into it. I have until 2015....

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Jan 10, 2012 12:22PM wallycat wrote:

Thanks ladies.

I just emailed my onco and she wants the 5-year plan.

My gastro guy in WI said I had the colon of a 20 year old....and no cancer in my family of any kind, except me with BC.  Sigh.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Jan 10, 2012 03:30PM elimar wrote:

To my knowledge, the studies thus far were conflicting.  The NCI is currently doing an ongoing collection of data for breast and colon cancer and the genetics behind both.  Stay tuned as they may come out with more definitive information one of these years.  The five year interval is probably too often for most of you, but I'm sure the docs will see you that frequently if insurance will pay at that interval, and as long as you "hold still" for it. 

Dx 6/24/2009, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 21, 2012 11:39AM wallycat wrote:

Update---had my 6 month (I waited 7 months Surprised ) onco visit.  She has changed her mind and has stated that 10 years is fine.  I can do the fecal test but the colonoscopy isn't necessary every 5 years if my first one was fine.

As I posted earlier, the gastro guy told me I had the colon of a 20 year old!  Oh to have a full body like that Tongue out so I guess I get a 5 year reprieve.  Maybe they'll come up with an easier way!!

I swear, sometimes the less I know the better I feel!!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Jul 6, 2012 10:04PM Aggiecat52 wrote:

Hi everyone. I had a colonoscopy on July 3rd and it was my second one since being diagnosed with BC in 2008. The first one was in 2009 and looked OK but she wanted to re-check in 2012. Again everything looked OK but I'm set to have another one in 2015. I really hate the prep! Mine was a two day prep this time with drinking two liters of Colyte on day one and four liters of Golytely on day two. The test itself was pretty easy; it was the prep that was the killer.

I was told that ILC can spread to the digestive system so I need close monitoring.

Aggie.

Dx 5/2008, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+, HER2-
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Jul 8, 2012 03:08PM Butterflylady2012 wrote:

I was diagnosed with ILC in April.  My Oncotype came back low risk of recurrence.  I had surgery, will be starting radiation next week and then another surgery for preventative mastectomy on other side.  My nodes were clear.  My question...diagnosed at 43, should I be getting my colonoscopy earlier then 50 now?  Advice please....

Dx 4/12/2012, ILC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 8, 2012 10:23PM tuffgirl wrote:

Hello Butterfly - I had my first at 47 having been diagnosed at 46. I only waited until then because of the chemotherapy. I just wanted to get checked for everything I could. It was NOT as bad as I thought it would be. I will be going back again year after next. Speak to your doctor if for peace of mind you'd like it earlier. take care

Dx 11/1/2007, ILC, 5cm, Stage IIIb, Grade 2, 1/12 nodes, ER+/PR+, HER2-
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Jul 9, 2012 01:35PM wallycat wrote:

Butterflylady,

(and please anyone correct me if I am wrong): OncotypeDx does not let you know your risk of recurrence (I don't think anyone can know that for sure); my understanding was oncotype Dx helps you decide with your decision on chemo (how well your tumor may or may not respond to the chemo)...which they extrapolate in % for recurrence with tamoxifen.  Confusing to me but that was my understanding.

 My oncologist indicated that if you have history of colon cancer in the family, the standard 50 and every 10 years is fine.  She does it more frequently because of a family history.  I sometimes wonder if I had an ILC met to colon, would they even find it...since it grows flat and thin.  Maybe it grows differently in different areas.  Sigh...

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Jul 9, 2012 06:02PM dreaming wrote:

I am supposed to get one very 5 years, I waited two extra years and had one done again last month and 7 polyps where founded, my oncologist only recommends a colonoscopy, they can see clearly and removed what is needed, a virtual colonoscopy misses some.

I also get a yearly MRI and abdomen /pelvic CT scan, that did not showed the polyps that even if benign with time can became cancerous if not removed.

Also I get an upper GI endoscopy  every 5 years to check my stomach and my throat, because of vomiting due to the  chemo, the lining of my esophagus is very thin and he checks for Barret disease, even that was a long time since my treatments, I  have GERD and take nexium daily.

I will never pass the 5 years again.

After the mastectomy a second diferent cancer was found: Invasive Ductal Carcinoma, C.F.M.:

Dx 7/7/1991, ILC, 1cm, Stage I, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Jul 9, 2012 06:06PM dreaming wrote:

Let me add, we breast cancer patients and survivors have higher risk for colon, and ovarian cancer, not necessarily a  recurrence of a type, this I was told and we tell at the cancer center where I work.

After the mastectomy a second diferent cancer was found: Invasive Ductal Carcinoma, C.F.M.:

Dx 7/7/1991, ILC, 1cm, Stage I, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Jul 9, 2012 06:32PM Caya wrote:

I'm on the 5 year plan too - partly because of BC, partly because my father had pre-cancerous polyps in his 50s.

I'm due next year when I will be 55.

Dx 10/16/2006, IDC, 1cm, Stage I, Grade 2, 0/16 nodes, ER+/PR+, HER2+
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Jul 10, 2012 02:43PM noraLCIStoICL wrote:

Mother had LCIS, multiple fibroadenomas, and fluid cysts in breasts --> tissue removal and implants not under pectoral muscles -- she was 45. At 36 she had colon cancer and hysterectomy for "difficult periods and pain".

Now me... ditto on the LCIS, fibroadenomas, and fluid cysts... 6 week ago today @ 47 I had bilateral prophylactic mastectomies plus endometrial ablation for heavy periods, then found out that while my breast sentinel node was clean, there was ICL in the region of the LCIS. 

I'm getting to the colonoscopies...

Been getting them since I was 28, irregularly (1993, 1994, 1997, 2000, 2003, 2008?9?) - never found anything to worry about. However, given my mom and her siblings (more issues) and my female cousins (similar issues)... now I need to get colonoscopies and endoscopies every 1-3 years AND I'm getting tested for Lynch Syndrome.

Here's a tip I learned/developed through trial and error -- I start eating low residue foods 4-5 days before the colonoscopy (avoiding fiber and whole fruits and vegs), 2 days before the colonoscopy I go on "no residue" foods only, and on the day that I'm doing the bowel prep in the evening, I only drink clear fluids after noon. 

Dx 6/6/2012, ILC, <1cm, Stage I, Grade 1, 0/1 nodesSurgery 05/29/2012 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 08/02/2012 Reconstruction: Breast implants (permanent) (Both)Surgery 08/03/2012 Reconstruction: Breast implants (permanent) (Right)Hormonal Therapy 09/09/2012 Tamoxifen
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Jul 11, 2012 10:05PM Butterflylady2012 wrote:

Hi Wallycat, yes you are correct, we might be saying the same thing but in different ways...my Oncologist told me that my risk of recurrence was 14% and with hormoney therapy it would bring it down to 9%.  Yes, as you said it helps you decide whether or not to do Chemo.  I chose not to, with Dr.'s backing because it would have only lowered my risk by something like 2%.  So after consulationt with my dr. and him speaking with a UCSF specialist I made my decision not to do Chemo.  The results they gave me in a print out that were quite detailed.  I was impressed actually, I did not expect it it tell me so much. I was so thankful to have it available to me, to help me decide.  Without it, I would have done Chemo not knowning the details. 

Dx 4/12/2012, ILC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 24, 2012 12:06PM wallycat wrote:

Well, I guess I am back to the 5 year plan.

Had some bleeding this morning...odds are a hemorrhoid, but now we have to investigate.

Does this ever end?

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Jul 24, 2012 12:17PM, edited Jul 24, 2012 12:18PM by SpecialK

My onc requested a colonoscopy after treatment.  I had one in 2008 that was the routine screening that happens when turning 50 (I was 51) and I had no issues, although I have had GERD GI reconstruction surgery in '95 and did have minor bleeding during chemo from soft tissue irritation.  My insurance refused to pay for the one my onc requested, and also said that unless I have symptoms they will not pay for one until 10 years from the one in 2008.  I have also had two clear PET scans since BC dx.

Edited to add that I just realized I posted on an ILC thread, and I am IDC, but the thread title caught my attention since I just had this insurance refusal in the last month!

Dx 9/27/2010, DCIS, Grade 3Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 06/20/2012 ArimidexSurgery 12/14/2012 Reconstruction (Both)Hormonal Therapy 07/18/2013 FemaraSurgery 03/07/2014 Reconstruction (Both)Surgery 04/02/2014 Reconstruction: Breast implants (permanent) (Left)
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Jul 24, 2012 12:31PM wallycat wrote:

Our insurance requirements changed a few years ago.  They used to cover only symptoms, now they only do preventive....

my gyn was freaked out the first time I told her she can't code I came in with a problem....

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Aug 17, 2012 06:28PM chefmb wrote:

You still need colonoscopy for detection of many colorectal cancers. PET/CT scans not the same.

Dx 3/3/2010, IDC, <1cm, Stage Ia, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 3, 2012 04:36PM MissTW wrote:

Dreaming is correct, I was given the same info when I was diagnosed with stage 3 colon cancer in 2007 then guess what happened? I was diagnosed with stage 1 ILC in 2010. My Oncologist, breast surgeon and colon surgeon all want me to have a total hysterectomy to prevent any further gynecological cancers.

 Another thing, it was mentioned that a CT scan can find lesions. According to my colorectal surgeon and gastro this in not true, colonoscopy is the thing to do. As for the blood test, not reliable as I had a negative result but I was postive for stage 3 colon cancer.

Please don't be frightened of a colonoscopy, it is truly a lifesaver!

Stage 1 ILC/LCIS er+/pr+ HER - 27 rads, grade 2, 0 Nodes NO CHEMO, ONCOTYPE SCORE 22 Colon Cancer Survivor STage 3, 5FU, Oxilaplatin/Leucovorin

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Oct 1, 2012 03:19PM wallycat wrote:

Had a clean scan.

50, 55 and now that I have been clean, they say I can go on the 10 year plan.

Prep is icky but getting it done is important. :)

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Nov 17, 2012 01:47PM rlwh wrote:

I had a colonoscopy in August before I was diagnosed in November. I had two polyps, and they told me every five.  I think the every five is a very good idea, and I am going to ask about that myself because, if ILC spreads, it goes to your digestive system (stomach, intestines, colon), your abdominal lining, your ovaries, or your brain. I say better safe than sorry. They haven't mentioned anything about colonoscopy frequency to me, however. I am just getting started. I found out I had abnormal mammogram on Oct. 18, found out I had cancer on Oct. 24, found out  definitely cancer and what kind on Nov. 8, after biopsy on Nov. 7. I found out the stage and some other information on Nov. 15 after MRI.  I wish you well.

Ronda

Ronda Harris

Dx 11/15/2012, ILC, 1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-Surgery 11/30/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)