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Old 04-25-2017, 02:47 PM   #1
v-ness
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when did you 'break up' with your onco?

hi all - this week it has been 7 years since i finished rads (although i still had herceptin until october 2010). last year my onco told me we could "break up" if i wanted. i wasn't really so keen on the idea. i was wondering when people who are said to be cancer-free stop going to their onco once a year and return to just yearlies with their gyno and mammograms? i had some odd-shaped little micro-calcifications in the fall for which i had a needle core biopsy (ouch) but they were benign. i have a six month mammo re-check in june. i didn't want to be a baby and hang on to my onco but wondered when others felt secure enough to let go? i seemed to remember that her2+ recurred within 8 yrs usually if it was going to.... is that true? thank you! valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 04-26-2017, 01:59 PM   #2
Cathya
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Re: when did you 'break up' with your onco?

Valerie;

I went every three months to my oncologist (who I had a wonderful relationship with) for 6 years. In the 7th I went every 6 months. His assistant (also a doctor) come in after the seventh year and told me they felt I was cured and didn't need to see Dr. Young any more. I'm sure Dr. Young wouldn't tell any breast cancer patient they were cured but that it was likely standard treatment after going so long without a recurrence. Dr. Young came in after and we hugged and he told me I could call him any time and would always be part of his family of patients. That was that. When I was diagnosed with ovarian cancer it was tested and I was told it was a totally new cancer and not a recurrence or spread of the breast cancer. Dr. Young has since retired....so sad for me....and I see a different specialist. I had a two year window to enjoy not thinking about cancer and that was nice. But I never felt cured lol.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Nice! My hair came back really curly. Hope it lasts lol.

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Old 04-26-2017, 02:36 PM   #3
jaykay
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Re: when did you 'break up' with your onco?

From April 2000 - September 2012, I saw my onc every six months. I was definitely NED but I think she wanted to see my every 6 months because I was Her2+ and never had chemo or herceptin (Stage 1A).

When I had a "new" primary in the other breast in September 2012, start all over again. Saw her every 4 months after chemo/herceptin were finished and have just moved to 6 months. I still take letrozole and get a breast MRI once a year (I had a bilateral mastectomy) I will never break up with her!

Best
Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-29-2017, 09:05 AM   #4
Laurel
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Re: when did you 'break up' with your onco?

Valerie,

I am 9 years out from diagnosis now. Last year my Onc seemed quite content to continue on meeting annually indefinitely. Frankly, I find other professionals, even my G.P. and Gyn, defer to her regarding simple things such as ordering prescriptions for vaginal atrophy. Sheesh. I hope to keep "dating" yearly forever.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 04-29-2017, 10:45 AM   #5
sarah
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Re: when did you 'break up' with your onco?

Never unless he retires! I've had a recurrence so I certainly can never be considered "cured". I love my old, retired oncologist and will continue to see him yearly as long as he is still seeing people and I am able to see him. He's so dedicated and retired - only consults and a top oncologist here (head of top cancer hospital) - that he doesn't charge patients anything anymore! Of course I always take a great gift - a good champagne or a big rose bush or ? I consider that I'm alive today because of him after my recurrence so I feel more confident seeing him yearly. I was on Herceptin for 6 years and at first I was told it might be for life. So my case is different to yours. Still in your case I think I would like to continue to see a cancer gynecologist and have good testing.
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Old 04-29-2017, 04:01 PM   #6
Yorkiegirl
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Re: when did you 'break up' with your onco?

I am now 12 years out and I still see my Onc yearly for blood work and exam. He say's this will continue for me.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 05-02-2017, 04:55 PM   #7
v-ness
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Re: when did you 'break up' with your onco?

thanks for your responses. actually, i got a hysterectomy in august 2010 because my mom died of ovarian cancer right after i finished radiation that spring. i think i am going to stick with my onco for as long as she lets me. i am superstitious about it. i worried that i was being a baby about it, but i have had too much cancer in my life to feel comfortable (husband and mom died of it, boyfriend has it). i was feeling one of those fake boobs recently that had 5 tumors in it you were supposed to find and i was freaked out because i could only find 3 no matter how hard i tried. i feel so much safer checked by my gyno once a year then checked by my onco, plus the mammogram. perhaps i should let go and move on, but when cancer's been all around you for years that can be real difficult. thanks all and be well! v
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 05-03-2017, 01:28 AM   #8
Vinafera
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Re: when did you 'break up' with your onco?

I have not, yet, figured out how to list my history so it shows up with all my posts.

August 2015 – MBC with mets to the femurs, hips, some vertebrae. Not a candidate for mast.
August – Oct 2015 chemo
Oct 2015 to Now (May 2017) - Herceptin every 2 weeks, femara, zoladex, xgeva, folic acid, multi vits.
Cancer markers have been stable and MRI's no change since January 2016.
March 2017 had routine MRI but had a reaction to the contrast, went to the ER, spent 4 days in ICU, and it took me close to 1 full month to return to “normal.”

I went to the ER the day after my last MRI. My Doc had not yet let me know the results so the ER Doc told them to me. My MRI showed not changes, everything is stable, no evidence of new stuff, 2 thumbs up I'm stable. What shocked the stuffing out of me is when the ER Doc told me that there had been no change to the 12 x 13cm ovarian cyst. I DID NOT KNOW THAT I HAD THAT!!! My Onc didn't tell me. My GYN DID NOT TELL ME. My PCP did not tell me.

I went to my GYN told her what was going on and asked her what to do. My GYN was in disbelief that my ONC didn't tell me about the cyst. Abdominal and vaginal ultra sounds in March 2017 show it's BENIGN and we are going to leave it alone and monitor it with f/u US every 6 months.

I feel as though I can no longer trust my ONC. How in the world did she NOT TELL ME! I found a way to get most of my med records for no charge and have been asking more questions. I have a malignant growth in my lung. I have bone mets in my ribs. I have probable stage 3 kidney disease. I have a fatty liver. I am anemic. All of this I found out after I got my records. MY ONC NEVER TOLD ME ANY OF THIS!!

Should I let her know that I want to go for a 2nd opinion? Or just go?

I wish I could “break up” with her due to remission. But I am facing having to do it due to lack of trust. Suggestions?
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Old 05-03-2017, 02:31 PM   #9
Donna H
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Re: when did you 'break up' with your onco?

Follow your gut. You need to feel confident and comfortable with your medical team. You need to be your own best advocate. Be a squeaky wheel !
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Old 07-19-2017, 07:48 AM   #10
chekmark
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Re: when did you 'break up' with your onco?

My oncologist released me this year, 6 yrs after dx. She said that some people need the extra reassurance and need to keep coming back but that she didn't feel that I needed that and it was my decision if I wanted to return to her or not. I choose to NEVER return to her (although I love her dearly). This was my last dangling string with cancer and I just wanted it all behind me. I love it when my ob and primary doctors refer to it as has a history of breast cancer instead of treating for breast cancer. Its like all those other decisions we need to make thru this journey, its a personal decision. I have no regrets so far, hopeful;;y it will stay that way.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 07-19-2017, 07:26 PM   #11
vlcarr
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Re: when did you 'break up' with your onco?

I had my yearly visit last December, 8 years out. When I went to make my next appt the girl told me I would be seeing a NP from now on. I was heartbroken. I think because my onc didn't tell me and you know she knew. I love my onc but I let it go. I still see the NP for my breast surgeon when I get my mammo on my one real breast so I see one of them every 6 months. I may still be seen by the surgeon due to my lymphedema who is primary on that. I find the annual gyn visit with a NP pretty useless but I still go.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 07-19-2017, 10:57 PM   #12
Catherine
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Re: when did you 'break up' with your onco?

I am 11 years out and still see my oncologist once a year. The appointment gives me confidence and I consider it an insurance policy. They have not said anything like I need to stop coming. Who knows, that might happen next year! I am guessing each oncology office has a different policy.
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Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 3.2cm
Chemo first: AC/Taxol over 16 weeks
Bilateral Mast Sep 06, 3 of 14 lymph nodes pos, 33 rads
1 year of Herceptin completed Dec 07
10 years NED as of April 2016
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Old 07-20-2017, 12:36 PM   #13
anna4969
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Re: when did you 'break up' with your onco?

I am 7 years out and see my onc every 6 months. He has asked me during the past several appointments if I would like to move to annual appointments. We have a wonderful doctor/patient relationship and I gently remind him that my Mom had breast cancer, my Dad died of prostate cancer, and 7 out of 10 of my father's siblings died of colon, thyroid, lung cancers. That pretty much ends our conversation on that topic. I need the assurance, if it can be had. Interestingly so, I was fully genetically tested and all was clear, this is sneaky business. For me, my family history is too significant for me to be comfortable with an annual visit. He and my breast surgeon share my lymphedema care, so my breast surgeon is a annual visit. I am waiting though for our health insurance company to perhaps question the every 6 month visits, so far no issues.
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1/10 rt. breast IDC er/pr - Her +++
9cm. tumor, 8-9 + nodes
Neoadj. FACT & beloved H!!, radiation, Dbl. Mast. Diep recons.
GP2 Vaccine completed 5/11
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Old 07-20-2017, 06:27 PM   #14
lkc Gumby
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Re: when did you 'break up' with your onco?

I am out 12 yrs now. At my recent Onc visit, my beloved Doctor advised me he was leaving private practice... Gasp!
I am truly happy for him, and since he graduated me to every 6 mos. to yrly check ups I will follow up with his partner. Forever grateful for his exemplary care, despite lots of dismal prognosticators.. I am still here and blessedly well
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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