PTEN test

Thank you all for the valuable information.

[IRENE FROM TAMPA]

Robyn -

You stated that you sent your tissue sample to Target Molecular Diagnostics.

I would also like to have mine sample checked for PTen. Where is this place at and is that the only place to send to? How do you go about checking on this?
any help you can give me would be greatly appreciated.

Thanks

www.tmdlab.com

[RobinP]

Hi Irene,

I hope the above link to TMD helps Irene. The appropriate contacts should be there for the lab. If not, let me know and I will look it up for you. And no, I do not know any other lab who does the pTEN test at this point. However, perhaps Michelle knows of some others as I know she researched pTEN a lot also.

Dr. Neil Spector from GSK informed me of TMD. Dr. Bacus, who owns TMD, does a lot of the testing for clincial trials on the new drugs like Lapatinib for GSK. If you notice, Dr. Bacus and Spector are often joint authors in many of the GSK research Lapatinib articles.

Good luck.

Robin

[Becky]

Robin


Did you arrange for your sample to be sent or did you have to have your onco do it? Did your insurance cover this or did you have to pay out of pocket? If you paid (or know the cost), could you share that.

I know how to get slides sent as I had my slides sent elsewhere for second opinions (when I was first diagnosed) so I know the onco doesn't have to "approve" it or anything.

Just wondering as I am always toying with getting Pten, Top IIA and Her1 testing on my tumor. However, since I have had a year of Herceptin (with 5 more to take me to 2 yrs past diagnosis), I do not know if I need the information now that I have had Herceptin and the typical 4 dd A/C and 4 dd taxol treatments.

Maybe, for me, ignorance is bliss because what if I am Pten negative, Top IIA negative and highly Her1 positive? It does not mean I will recur but I will worry that I will and in an adjuvant setting, there is nothing else I can do. I have done everything in the adjuvant setting that I can (I think you know what I mean).

Kind regards

Becky

[saleboat]

Hi Becky,

I struggle with the issue that you raised-- I'm curious about the PTEN, but what would I do with the information-- how would it guide my treatment decisions given all the tx I've had. Still don't have an answer-- maybe shut down my ovaries, maybe do a vaccine trial...don't know. Part of me wants to give up cancer as a hobby.

Jen

[RobinP]

Becky and Jen I too think that too much information is not a good thing when it doesn't really help in treatment choices and only agonizes your mind more. I only researched pTEN late last year to help me make an informed decision about whether or not to do late adjuvant Herceptin. I choose a very self directed aggressive approach to dealing with my treatment decisions and choices after having been misdiagnosed multiple times over 17 months by a very experienced, outstanding breast surgeon, a bright, experienced pathologist and one seasoned radiologist, all of them diagnosing incorrectly that I had benign cystic breast condition that ultimately turned out to be breast cancer. Then once my cancer was diagnosed, 2 experienced seasoned pathologists, one from a major cancer institute, diagnosed my cancer as only a very large DCIS, pre cancer, with a micromets to the first node. I had only CMF treatment based on that diagnosis which was considered very aggressive treatment. However, about year later, I had my lumpectomy/mastectomy cancer slides checked again, after learning about my original fine needle aspirate biopsy pathology misdiagnosis, only to learn that that not only did I have DCIS with a micromets to the first lymph node but also a small invasive Her2 cancer that probably warranted AC treatment rather than the CMF treatment that I had received.

After my misdiagnoses, I feel that I must keep on top of things as my own best advocate, never again assuming that my physicians are doing that for me. Perhaps that is why I log onto her2support, it encourage me to stay vigilant and "abreast"(...smile) on her2 while also helping others too, I hope.