Her2 postive/TN rant

Faith in Him · 07-08-2009, 06:04 PM

Ok- I know I'm beating a dead horse because things are what they are. But I can't seem to let this one go.

I recently discovered that my orginal dx of hers 2 +++ was determined by Fish only. My loc recurrence was triple negative by Fish and the other test (the name escapes me now). Herceptin did not seem to be effective for me and now I wonder if I really ever was her2+++. Now some would think it crazy that I would want to be her2 + but all of you on this web site understand why. I am so encouraged by all the recent research and the super herceptin trials. On the other hand I don't want to choke down tykerb every day if I'm not positive.

An onc @ UCSf suggested that my masectomy tissue be checked. Only a punch biopsy was checked for receptor status @ recurrence and she feels this was not enough tissue. My current onc will not send it through for more testing. UCSf will not consider me for any trials until they firmly determine my receptor status. So, I'm in limbo on this issue. The onc @ UCSF tried to reassure me that there is a lot of interest in triple negative bc but I can't help but feel a little let down.

Plus I don't want to lose all of you and the knowledge that is on this website.

Tonya

'lizbeth · 07-08-2009, 06:12 PM

Tonya,

I feel your pain. I don't understand why the onc. wouldn't want to help you determine your status clearly. I absolutely hate situations like this and I seem to end up in them all the time since I was diagnosed with cancer. Ugghh! It sucks being a cancer patient.

The squeaky wheel gets the grease. You have to keep asking your currently oncologist to help you determine your status.

Or perhaps someone has another good suggestion?

Jackie07 · 07-08-2009, 06:32 PM

Tonya,

I seem to recall someone has the same situation - different Her2 status during recurrence. Surely there should be a way to reconfirm your Her2 status, be it positive or negative. I hope others who have more knowlege on this will chime in.

In case you are indeed triple negative, you probably will get as much support as you did here with the triple negative breast cancer support group. http://www.tnbcfoundation.org/index.html

07-08-2009, 07:30 PM

Hi Tonya,

I think what you need to do is get your mastectomy tissue from hospital 1 and bring it to UCSF to have UCSF re-test. When I was first diagnosed, I started at Cal. Pacific and switched to UCSF. My UCSF oncologist wanted to double check the receptor status. So I called the pathology department at Cal. Pacific and had them messenger the slides from my biopsy to UCSF. The UCSF pathologists then reviewed the slides. I think you should be able to retrieve your mastetomy tissue. It is yours after all. Now that I know how disorganized UCSF is, I might recommend that you pick up the tissue yourself and walk it over to UCSF. Please let me know if you have any questions.

Best,

Jill

Believe51 · 07-08-2009, 07:47 PM

Tonya, just remember that dead horses do not mind if they get beaten so rant away. Personally, if this was Ed I would go ahead and check the receptor again for reassurance. This would not only help in getting the chance to get into a future trial, it would help to determine what drugs may help. It is a piece to your puzzle that knowing will help your fight. Peace of mind in knowing every freaking aspect of your particular cancer will be ammo in any future fights. Of course, it is knowing all we can know and fighting back with all we have. Jill has a perfect solution as far as hand delivering, I like that. Let us know what you decide.>>Believe51

sassy · 07-08-2009, 08:16 PM

Tonya,

If your current onc won't agree to recheck, ask for your slides and take them to the onc at UCSF that will test them. I don't understand your current onc's reluctance.

lexigirl · 07-08-2009, 08:26 PM

Tonya,

I can't believe that your onc wouldn't retest your tissue! That's crazy! I agree with the other ladies. Request your sample be sent to UCSF.

Hugs,
Lexi

Faith in Him · 07-08-2009, 08:42 PM

Thanks, girls. I guess I knew the answer all along but it was good to get it confirmed by you.

I'll have UCSF test the tissue. I am thinking about changing to UCSF anyways. It is a bit of a commute but might be worth it.

Tonya

07-08-2009, 08:50 PM

If UCSF is too far away, you could work out an arrangement with a local oncologist whereby UCSF would direct your care (i.e. advise on which treatment to use) and you would actually get your treatment closer to where you live. I know of others who have done this. Your current onc, however, sounds like a jerk, so you might want to either find a different local onc or deal with the long commute to UCSF.

Jill

ElaineM · 07-08-2009, 09:15 PM

If your current oncologist can't or won't help maybe you can find someone else who can or will help you.

Mary Anne in TX · 07-09-2009, 05:50 AM

Hey Tonya,
If we become nothing else, we become true fighters when we travel this path. I'm betting the great fighter in you wins this battle! luv ya, ma

Margerie · 07-09-2009, 07:58 AM

Maybe your onc is reluctant because he/she suspects he screwed up.....

If it were me, I would make the retest happen

Good luck and keep fighting

Rich66 · 07-09-2009, 01:38 PM

In addition to whatever tissue biospy is evaluable, you might want the serum her2 test to add to the picture. Elevation suggests benefit from Herceptin. ANd benefit is being considered even after progression. And it could argue in favor of getting Lapatinib(Tykerb). Also..keep in mind there is some suggestion that cancer stem cells(CSC) are ER-, Her 2 positive..despite what the majority of tumor cells show. in other words, all BC might be her2+ in a very important way. Current indications are that Lapatinib is one of a few available therapies that address CSC.

'lizbeth · 07-09-2009, 05:42 PM

Tonya,

With your rant I screwed up the courage to ask my oncologist what happened to the plan with my annual MRI. I got put in for a consult and I feel so relieved.

I hope you get good news soon too!

Donna · 07-17-2009, 04:02 PM

Hi Tonya,

I live here near you and wonder who you are seeing as an oncologist? I would never take "no" for an answer on something so important as having that tissue sample checked again! I would be happy to assist you in any way I can since I am near you. I have a great oncologist and maybe she could help?

In any case, get the slides and do what you need to do to get an accurate reading!

Love to you, Donna

Debbie L. · 07-17-2009, 10:00 PM

Tonya, something is not making sense here.

FISH results do not come back as a number of pluses ('seems like that word should have two "s's" but spellcheck says no). The reports of one, two, or three pluses are how IHC HER2 results are reported. FISH results are typically reported as simply positive or negative, or there is a ratio given.

Are you saying there was no pathology report at mastectomy? That seems incredibly weird and insufficient. That needs to happen, and since there is now this question - it should happen at an NCI-designated Comprehensive Cancer Center.

I suggest that you go to the lab that holds your tissue and slides and sign it all out to yourself. Then take it to where you want it to go to clarify this important question.

Please let us know how it goes. We're here, rooting for success (answers to your questions).

Debbie Laxague

Joan M · 07-23-2009, 05:28 PM

Tonya,

Fish is a more precise test than the IHC, or immunohistochemtry, test.

Usually the IHC is done first and if it comes back 2+, it's considered inconclusive and then subjected to the Fish test. IHC 3+ is usually considered to be HER2+, but I think that now even if the result is HER2 3+ the Fish test may still be used as a second test.

In any case, I don't blame you for wanting to make absolutely sure of your HER2 status. Otherwise, what's the point? You could go to another facility and have them test your status by getting a tissue sample (not the slides) from your mastectomy. They would probably do both an IHC test and then a Fish test.

And I would agree with Debbie about the +++ part, and perhaps you can get a copy of your original pathology report to find out which tests were actually done to determine your HER2 status.

Joan

Faith in Him · 07-24-2009, 02:48 PM

I found my original pathology report and it states:

IMMUNOHISTOCHEMISTRY:

Er - negative
Pr- negative
HercepTest (DAKO) positive, focally 100%, 3+/strong.

What is the herceptest?

Thanks,
Tonya

Becky · 07-24-2009, 02:57 PM

It is a test co-marketed by Genentech that measures the amount of Her2 protein. You can measure for Her2 by measuring overproduction of protein or look to see how many copies of the Her2 gene are present. Both are viable but the protein is at least showing you make too much protein (which is the go-go button). For example, perhaps you have millions more copies of the Her2 gene but if they are non-productive, then they don't make protein and it is just a mutated mutation.

Some people may disagree with me but its the protein that counts more (and it may be why Herceptin works in some women who are Her2 neg - they don't have an excessive gene count but what's there produces too much protein).