Lack of information

[mcgle]

Hi all

It seems to me that here in the UK, we do not receive the information you get on your path reports etc.

For example, I do not know my proliferation rate. The oncotype test was not done, either. I suppose it all boils down to money, and most people (including me) rely on the NHS for their treatment in this country.

My surgery was first class (cannot grumble about that), but I wish I knew the whole picture. My prognosis is excellent (even though weakly HER2+), but there is that niggle ...

Mcgle

[AlaskaAngel]

I would tend to agree with you.

In the U.S. those who are treated at major cancer centers also seem to have more thorough analysis than those who are treated elsewhere.

And although I was treated at a major cancer center in 2002, as recently as that my path report has very little analysis because many of the tests now done were not commonly done anywhere back then.

A number of people in her2support have had a portion of the tumor block independently further analyzed for various testing. I don't know how difficult it would be for you to have that happen in the UK.

AlaskaAngel

[mcgle]

Thanks for your reply.

An additional problem for me is that my tumour (believed to be less than 1 cm) was broken up and extracted through the two biopsies I had prior to surgery. Indeed, at excision, only a 2.5 cm section of DCIS was removed – no tumour was found. So, I do not think I would be able to get any additional information. I am an anomaly, and quite frankly, I don’t think they know what to do with me!

Mcgle

[Lani]

I have helped a Danish woman have her slides sent to MDAnderson for pathologic second opinion. Many of the foremost US cancer centers offer similar services--Stanford, Mayo Clinic, Dana-Farber, Memorial Sloane Kettering. It is best to be specific about what you want. None offers OncoDx--that is something offered by a private company and Dr. Slamon, cited as the "father of herceptin", feels it is no better than well-performed ER, PR, her2 by FISH and Ki-67 ( a measure of proliferation). her2 by FISH is not performed equally well (recent papers showed that) and is indicative of herceptin efficacy (rather than her2 by IHC which is usually graded 0, 1+. 2+, or 3+)

I only have experience with Stanford and MD Anderson. If you called Stanford's international medicine dept perhaps they could check with someone and get you a cost estimate for such a second pathologic opinion.

Just food for thought...

Hope this helps!

[mcgle]

Thank you for that, Lani. I will consider what you have said.


In the meantime, can you (or anyone else) tell me what is the difference between the S Phase and Ki-67. And would a low FISH score (2.71) equate to a lower proliferation rate? (My tumour was grade 2.) Yes, I know I’m clutching at straws here …


Found your her2 borderline--a new type of breast cancer??? item very interesting. Don’t know where I fit into this though, as I am strongly ER+ and moderately PR+.


Kind regards


Mcgle

[Lani]

Ki67 is the best measure of proliferative rate. It is what is used in the OncoDx test as a marker of proliferation and it is what Drs Slamon and Pegram feel, in combination with ER, PR and her2 by FISH, best predict recurrence.

G=phase, S=phase, etc are a stage during cell division--I suppose they count how many cells they can see under the microscope are in that phase of division

Grade 2 is an obsolete term.I think I listed articles on this before. It probably means it is not as bad as Grade 3--but most have now been reclassified by other means (and some are Grade 3)

All agree that a low FISH score IS A GOOD THING. It is good that it is FISH positive, as herceptin felt to be effective primarily for FISH positive tumors and it also means that the gene is not as amplified (it is not copied as often so not as many receptors are on the surface of the cells sendiing signals which make the cells multiply like crazy)

Every patient has a unique tumor. Are you wondering where you fall in the bell-shaped curve of all breast cancer? OF her2 + breast cancer?

If it is really bothering you and if you are node negative, perhaps you should consider an OncoDx test.

There are no certain answers.

Hope this helped!

[mcgle]

Thanks again, Lani.

Yes, I was node-negative and there were no signs of vascular invasion either (thankfully), which is why I did not receive chemo. Neither was herceptin recommended. Actually, there seems to be some controversy over whether herceptin would work for us HER2+ borderlines, anyway.

That’s why I am wondering about my proliferation rate. Surely, if all other prognostic indicators were good (barring the borderline FISH result), this should have been low? But I just don’t know.

There is still much to chew over!

Mcgle