Decisions, decisions

[Lien]

Hi all,

I quit taking Arimidex and Zoladex last nov, when my 5 years were up. After about 5 months, my periods returned (can you believe that? I'm 51!)

I also developed a small swelling on my nipple, that doesn't look like Paget's disease, and a mammo & Ultrasound were fine. They did see some dilated milk ducts, but that could be caused by the swelling. My breasts also become sensitive around the time I ovulate. Neither my breast surgeon, nor the mammacare nurse practitioner think the swelling looks like cancer. They all independently looked at it and said it looked okay.

So I went to my onc and asked whether I should go back on anti-hormonals. She discussed my situation with a group of experts from the National Dutch Cancer Institute and they said that doing two more years of Amrimidex would be an option. It could reduce my risk by a few percent points. She didn't say how much.

I know there's a new version of Adjuvant Online that could show me my statistical risk, but I can't log on for some reason. Perhaps it doesn't work with Mac Os X yet.

If the risk reduction would be significant, I would consider it, but if it's just a case of making an already small risk just a bit smaller, I would hesitate. Now that I'm off anti-hormonals my libido has come back, which made a huge difference in my marriage. I hadn't realized how much not having sex influenced the relationship and also my sense of wellbeing. Oh, and my Dexa scan came back with a slight improvement in the lumbar region, but still borderline osteopenia. I was pleased with that.

Could someone please try to log on to Adjuvant and do the estimate for me? I'm 51, ER/PR positive, was Her2++ initially, confirmed by FISH (I guess, as the result came back positive), clear nodes, 0,6 cm IDC (surrounded by DCIS), clear margins. I've had 4.5 years of Arimidex and Zoladex

Thanks for your help. Any thoughts on this would be appreciated. Oh, and I didn't get Herceptin, because it was not available at my time of diagnosis.

Jacqueline

[Becky]

There are 2 choices when you go into Adjuvant online. Initial diagnosis and then after 5 years of tamoxifen. I did both on you.

In initial diagnosis, I used 45 as your age and I couldn't remember your tumor grade so I used the worst case scenario and used 3 and also used high risk criteria (for the Her2+

Your 10 year recurrence free would be 92.4% if you did nothing but surgery (with rads for lumpectomy) and 94.2% with the use of hormone therapy.

Going to after 5 years of Tamoxifen - and use 5 years of Femara your rate goes up a meager 94.4%. It is probably better than this because both are just 10 year rates. It doesn't say which of the original 5.8% of the women in the first 5 years actually "made it" to the second 5 years even though over the 10 years, they don't make it. Basically the second set of numbers have to take that into account but don't give you that data. What that data says is the women who take 5 years of tamoxifen and do nothing else, their rate of recurrence is 6.2% over the next 5 years but the women who do take the 5 yrs of Femara, their rate of recurrence is 3.8% (a third or so reduction) but on a small number. In the second go around, I did use your current age.

I really hope you understand this!

[Lien]

Thanks Becky, it was kind of you to run my path stats through Adjuvant. Is this the original Adjuvant, or the new one, which includes Her2 positivity as an option?

I did understand what you wrote, and it makes sense. The expert my onc consulted with, said that prolonged use of an AI decreased the risk of recurrence by a few percent, so I guess that would be about the same as prolonged Femara after Tamoxifen.

Love

Jacqueline

[tricia keegan]

I just discussed remaining on arimidex with my onc yesterday.
I don't know if this little pill is to thank for keeping me cancer free at five years, but hate to tempt fate by stopping it.
My onc is inclined to agree given the recent studies, and although I'm four years on it now I do hope to continue beyond five if still NED next year.

[Becky]

The new version is not yet available. This is why I picked the "high risk" option on the current version so I could kind of "make up" for the lack of Her2 to pick.