Numbers don't make sense

Sarasmiles

I am currently taking Tamoxifen, and have appt with BS( the only Dr I see I guess) next week. I hate the pill and want to stop taking it.

Here's where I get confused. When she first told me I had cancer she said Stage 0, no big deal, bump in the road, totally 100% good to go. Then during lumpectomy found to be micro invasive in 2 spots. So then Stage 1a but still really no big deal, do the rads then we'll take some meds. Chance of recurrence when initially at stage 0- 11%. I start Tamoxifen, have every Flippin side effect( bone pain, bruising, blurry vision, weight gain, hot flashes, leg cramps...) told her I would stay on for 3 months until 1st mammo which is next week. She then changed my recurrence odds to 60% if I do NOT take the Tamoxifen. Wondering how recurrence rates are factored if not stage 0? She said the meds would cut chance in half-that still 30%. AND I am miserable.

So anybody with any advice/experience? Just trying to figure out the numbers...

doxie

Sarasmiles,

First, you should also be seeing a medical oncologist (MO) for the Tamoxifen prescription and information on chance of recurrence. I don't believe there are many women here who have only seen a BS. If you are still pre- or peri-menopausal, there is the option of shutting down your ovaries and taking an aromatase inhibitor (AI) if you cannot tolerate Tamoxifen. AIs are the primary anti-hormonal that post menopausal women take.

I am guessing that the micro invasive sample of IDC is too small to send for an Oncotype score. This would give more precise information on recurrence percentages. Your Grade 3 IDC impacts this much more than Stage 0 DCIS. This is where some confusion may be coming with what the BS is stating as per recurrence percentages. Still, an MO should be providing this information, not your BS.

Hopefully someone with DCIS/IDC similar to your situation will comment too.

Sara536

Does anyone know if there is a computerized flow chart that could make it easier to figure out these recurrence percentages? (Or are you supposed to start with 100% and subtract a certain percent for each treatment and add a certain percent for things that could have a negative impact (like the 20% chance of dying within a year of suffering a hip fracture caused by Anastrozole). Does suffering from pain count count for or against you? Does giving up count as being weak or realistic. What percent do you subtract for positive attitude and how much would you add orbsubtract for denial? Where do your other diseases fit in? I've been trying to superimpose the estimates I got from the MO over the one I got from the RO and choose an average. I don't think I can make that work. My current plan is to go with denial but I still plan to get rid of everything I own so that I can live fast and free.🎉⛱💸📞🎇🌕🙉🙈🐯😰🎧🎢⌨📺🔮🔮 (

KBeee

Those numbers do not make sense. A medical oncologist is the expert on Tamoxifen and should be the one you are seeing about this. Hopefully that person ordered an oncotype of the DCIS and is monitoring side effects of Tamoxifen. If you cannot stay on Tamoxifen, then ovarian suppression and an aromatase inhibitor may be something you can better tolerate. I tolerate the AI better than I did Tamoxifen.

KathyL624

30 percent sounds awfully high to me. Can you ask her where she is getting that from

Sarasmiles

I am going to ask her to explain the reasoning behind the numbers when I go next week. I was just curious in the meantime... Thank you for your advice. I knew it didn't seem quite right.

Sara536

Does anyone know if there is a computerized flow chart that could make it easier to figure out these recurrence percentages? Are we supposed to start with a 100% recurrence rate and subtract a certain percent for each treatment and add a certain percent for things that could have a negative impact like the 20% chance of dying within a year of suffering a hip fracture caused by hormone therapy? (but be sure to factor in the odds of that happening anyway if you refuse the therapy). How much does suffering for 5 years get you in terms of survival after you subtract for possible blood clots, bone crumbling, stroke, heart attack and loss of kidney function? How about 10 years? Right now I don't wan't to try another AI anymore than I want to drink hemlock or shoot myself in the leg. Is giving up considered pathetic or realistic? What percent do you add for positive attitude and how much would you add or subtract for denial? Where do your other diseases fit in? I've been trying to superimpose the estimate I got from the MO over the one I got from the RO but I don't think I can make that work. Everyone expects hard answers from our doctors, but all they can really give us is chances in terms of percentages. But what good are chances? Actually, the smallest chance can lead to a lot of optimism and creative thinking so I am going to go buy a lottery ticket and fantasize about all the causes I will support with my winnings! It's the thought that counts! My current plan is to go with denial but still I plan to sell everything I own so that I can live unencumbered and free for whatever time I have. 🙄😧😡🤔💡⛺️

dtad

Hi Sara. Love love love your post. I think what you are really talking about are QOL issues and how they factor in when looking at recurrence rates. We all have to make our own informed decisions. I've been on this forum long enough to realize that recurrence is a crap shoot. Also no one is going to do a study on those of us that refuse anti hormone treatment. Just have to respect all personal decisions that are made. Good luck to all..

Sarasmiles

Dr took me off of Tamoxifen, said that QOL is important. Also no more Effexor. I can go back to my beloved Prozac. IF it comes back bilateral mastectomy but it's IF not when.

Mammo looked good. 1st one I've had. NED. Celebrated with my favorite Chinese for lunch and my fortune cookie says:

There is no one thing that stays the same during this life.

Smart cookie. Have a great day ladies 😊

AngelaKS

Glad to hear the mammo was good! Take care!