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Old 05-08-2008, 06:32 AM   #1
Hopeful
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Five percent of breast tumors may double in month

http://www.reuters.com/article/healt...77597420080507

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Old 05-09-2008, 02:37 PM   #2
AlaskaAngel
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Question

As a comparison, the "average" doubling of all types of bc is said to happen roughly every 100 days.

Admittedly the original "surgeon" I saw here delayed my diagnosis, so I do have personal evidence of the relative speed of doubling of my particular type of HER2 bc by imaging. Mine was 0.6 in June, 1.01 in September, and 1.6 on removal in December.

What I find particularly disturbing is that I was told by the same surgeon, (who did NOT do the surgery for removal of the tumor) that "a delay of 3 weeks won't make any difference".

Although size is only one factor to consider, it still does make a difference in terms of what treatments are generally recommended/considered/completed.

The length of delay prior to surgery I think actually may be very important in some cases. And even the posted article doesn't discuss that aspect at all and I think it should. I wonder how many patients are misled into believing that the passage of time isn't important prior to removal.

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Old 05-09-2008, 05:43 PM   #3
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I feel I was misled. Mine was 1.3 cm on mammo and ultrasound but 1.9cm on removal 4 weeks later.

However, my cousin (who I speak of here who is high ER/PR+ but not her 2+) was shown her mammos for 4 years in a row where her cancer was prominent (but deemed "nothing" by the reading radiologist). Her's was only 2.2cm on removal (with 2+ nodes). Lucky it was one of the slow growers!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-11-2008, 08:47 AM   #4
Lani
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Alaska Angel

Do you know your Ki-67? It reflects the rate of division and hence the rate of growth of the tumor at the time it was removed . I have already mentioned that the Ki-67 value may vary with the stage of the menstrual cycle during which the tumor was removed.

I think the danger here is surgeons, and others, making global statements
about breast cancer when it is several diseases and not one!
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Old 05-11-2008, 01:10 PM   #5
AlaskaAngel
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The learning curve for oncologists

No, I don't. It is not on the early 2002 path report, and so when I specifically asked my onc about it, his reply was that such things were "not really relevant anymore..." unfortunately. He is also the guy who never told me I was HER2+++ in the first place.

It may not seem like it sometimes, but being diagnosed in today's world of bc is lightyears better than being diagnosed prior to the understanding of the importance of "unimportant" things like HER2 status....

Thanks for suggesting it, though, Lani.

A.A.

P.S. I wonder if the time will ever come when oldtimers will be able to go back and have our tumors reexamined to figure out how much of our treatments were on target and how much just were "collateral damage". It might seem like just a question to satisfy curiousity but in reality it could and should help in deciding if other treatments should be started.

Last edited by AlaskaAngel; 05-11-2008 at 01:14 PM.. Reason: To ask a question
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Old 05-11-2008, 05:31 PM   #6
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And I think it would help tons of other people.
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 05-11-2008, 07:55 PM   #7
Becky
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Hi Angel

Many people have privately asked me if I was going to get my tumor TopIIA tested or PTEN tested. I said no. The rationale is I had AC followed by Taxol and then later, Heceptin. So, now that I've done the gamit, what would it do to see I am TopIIA negative (where Adriamycin was not needed) and PTEN negative (which would greatly reduce the effectiveness of Herceptin). Then I would just think about that and why? I am getting close to 4 yrs out and I have done all that is humanly possible even if (except for the taxane) it did absolutely nothing extra and its just me, my omega 3, vitamin D and aspirin!!! Right now I am cruisin' down the Survivor highway and I have no plans to exit.

Hope you had a great weekend.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-12-2008, 12:05 AM   #8
AlaskaAngel
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Looking back, looking forward

Hi Becky!

So far I have also chosen not to be tested because as I understand it some tests are not yet reliably standardized, and as such they can lead to false assumptions in making choices of therapies.

The farther out one gets without recurrence, the more newer "protections" there are that others will have that we will not. In my case there was no Herceptin, no standard of dose dense, no use of taxanes, and not even evaluation of Ki-67 in the recommendations for treatment. Having made it past the first 5 years I know that the choice of chemotherapy made makes little difference now -- but having missed being able to combine chemotherapy with Herceptin, I do wonder about the long-term value of that. Given the recent information about the increasing late and damaging effects of 5-FU on the brain, and knowing that the protection from chemotherapy is past, one can certainly regret having had the "cutting edge" treatment of 5-FU.

As time goes by, fewer and fewer of the conclusions reached in more recent adjuvant studies that include newer protections will apply to us because, like Herceptin, those benefits are only given and apply to those who are relatively newly diagnosed.

Very likely I will have a bit better sense of how I feel about some of this if version 9.0 of Adjuvant is released, if it provides those of us farther out from treatment the choices to enter data most specific to our circumstances. I neither believe I am home free nor about to recur, and I too believe making healthy lifestyle choices day by day can only help!

As ever,

AlaskaAngel
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Old 05-14-2008, 07:06 PM   #9
Joan M
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I felt I was also misled about the urgency to remove the tumor. In mid July 2003 my tumor was 1.6 cm on mammogram. A biopsy determined it was grade III, and the breast surgeon informed me of that without blinking, meaning that it didn't seem any different to her than grade I. When the tumor was finally removed -- on Sept. 16 -- after I consulted with a plastic surgeon and everybody went on their respective vacations -- it was 2.54 cm.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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