The good and The bad

Got back from my oncologist. Ok here is a lesson in what a oncotype dx test is and how it is used. An oncotype dx test is a test for the risk of recurrence of cancer and the benefits of chemo. They test 21 breast cancer genes that they know if over expressed are a valid indicator of recurrence. Then they mathematically put this into a score. So here's the deal, the scores run from 0 to a 100. A score of less than 18 is a low risk of recurrence around 5% and you gain very little from having chemo. A score of 18 to 31 is medium risk and this is the big gray area as to if chemo would benefit you or not. Reason is that they don't want to error on the bad side so people in this category usually get chemo and are left out of clinical trials of not having chemo to see what the difference is because well, who is going to be willing to do fore go chemo if its not sure if you are going to benefit or not. Anything over 31 is considered high risk of reoccurance and the benefits are huge with chemo.

So drum roll here, my score a whopping 73. Shit. Without chemo my chances for reoccurance is 40%. Breath. Good news is that with the chemo my chances of reccurence is reduced down to less than 10%, closer to about 8%. Yea we'd all like to see a chance of 0% but you just don't get that with cancer. So I like to look at it as a 92% chance of not having a recurrance. And I should say this is the reccurence rate at 10 years. Years 1 to 9 is less than that. Strange I know but, something else I have found out is that with breast cancer unlike other cancer the longer out you go without a reoccurance, they higher your chances are for a reoccurance. Go figure.

So what does all this mean to me? I don't care if I had a score of 5 there was no way I was fore going the chemo because its agressive. Grade 3. I already knew my score was going to be above 31 because its so darn agressive. Typically its the low grade cancers that score low. Not always but, usually.

So let me throw some good news in here. The news I had to explain to my dad in the car because he was down in the dumps after hearing the 73 score. Not sure what he heard after that because we stood in the examination room for a long time after the doctor left looking at my results on the very large computer screen that hangs on the examination wall. Since I had read about this test up the ying yang I knew exactly what it said and went over it again with my dad. In the car I broke the good news to him which is that its the high scoring, agressive cancers that respond to chemo the most. Slow growing ones. Not so much. Its the high grade agressive cancers that get the shot at the 27% chance that this thing will pathologically go away.

More good news. Yea we all like good news. My tumor has responded in Dr. Barth's very words "remarkable well, after two rounds it has responded the most it possibly can". And he took his time feeling around. Yea I can tell its smaller but it didn't mean much to me because I couldn't really tell how much. After two needle biopsies everything was so swollen for so long I couldn't tell if it was shrinking or if just the swelling was going down. And I couldn't really remember exactly what it felt like before because it was so long ago. So its responding and its responding the best it possibly can. It confirms my decision to have the chemo first.

So what now. Yes we have more of a game plan in place now. I will have round 2 tomorrow. Round 3 on the 24th. I will have a MRI sometime during the week of 4th of July either on the 5th, 6th or 7th.

If nothing shows up on the MRI, off to surgery I go. Now I know that the MRI can only detect something 5mm or larger so there still could be something small in there. Whatever is removed will be sent to be biopsy. If there is cancer left, Dr. Barth will be running test on it. It will mean this is the cancer cells that were resistant to the chemo I had. He will run test to see if the remaining cancer is responsive to other types of chemo and I will have two more rounds of chemo after surgery. Because my oncotype dx score is so high, I would benefit from this and give me the best chances at a lower reoccurance.

If they can see something on the MRI, Dr. Barth said he would want to do two more rounds of chemo before surgery. He didn't mention another needle biopsy but, I'm no dummy and I know if they can see it on the MRI, its big enough to be needle biopsy. And how else is he going to tell what chemo it would respond to but to do a needle biopsy and test it. Then we could tell how much the remaining cancer responds.

So what to hope for here? Hoping its completely gone. If they can't see anything on the MRI, I go to surgery, if the biopsy comes back with no cancer (that's my 27% shot here) then no additional chemo needed. And I get to put that dragon to bed. Ok so that's what I'm praying for but, if the damned thing doesn't completely respond and doesn't completely die, then crazy me is hoping that it is big enough to show up on the MRI so that we have something to see if the additional two rounds do the trick. In other words if all the cancer doesn't respond to this chemo then I want another chance at seeing if it will completely go away with the additional two rounds. I didn't tell Dr. Barth this because I think he is already wondering about how I think. And here is why:

I talked to him about the lymph node removal. I said I'm assuming that regardless of response that a senital node biopsy will be performed. He said yes because metal tumor markers are in place Dr. Guerra (my surgeon) will be able to inject the blue dye and detect the sentinal node. It will be removed and sent off for biopsy. It won't be biopsied during surgery because we already know I don't have any gross lymph node involvement because nothing showed up on the three scans I had done of my lymph nodes. What would be there would be microscopic. He also said he would be extremely surprised if anything showed up in the sentinal node because my tumor has responded so well that micorscopic cancer is going to be killed off. He seems pretty darn sure of this. So I said ok so I get to keep my lymph nodes. That is very important to me. I really want to keep those because you need them. He was thrown for a loop with that announcement. He actually sat there quiet for a minute. Then he says that is an unusual perspective. (I wanted to say that's because I don't think like normal people but I didn't want to scare him that much) He went on to say I think you also might have some miss information. (I didn't) He says we don't take out all the lymph nodes anymore. We haven't been doing that for about 55 years. You have three tiers on lymph nodes and if there was gross cancer involvement in the sentinal node then the first tier of lymph nodes would be removed which would involve about 20 nodes but, we have at least a 100 nodes and we know that removing 20 doesn't effect your immune system. We know that for sure. Ok. That's nice and I knew that. I didn't say anything because he had confirmed for me that the whole lymph node is a non issue for me because mine won't be remove. But what my issue is, is not compromised immune system. I all ready knew it doesn't compromise that but what does happen or could is edema (swelling and water retention, not good) of your arm. You have to really be careful of your arm forever and its my right arm here people. The one I use the most because I'm right handed. I didn't say this to the doctor. What I did ask was so I'm keeping my lymph nodes? And he said yes. Good enough for me.

Oh what will happen if they find mircoscopic cancer cells in my sentinal node? They will widened the range of what is radiated to include my lymph nodes and that will kill any possible microscopic cancer cells that got past the sentinal node but, they will not go in and do any removal because there isn't any gross involvement, we all ready know that from the scans so the radiation (which I'm going to be having anyway because I'm having breast conservation surgery) would take care of it if they find any microscopic stuff.

I also pinned him a down a bit. I test my doctors. And what I found out is this doctor doesn't guess. If he says something its something he is pretty damned sure about. So what I said was given everything we know, from the previous tests and the high oncotype dx test are we leaning towards a high possibility that I will be having two additional rounds of chemo. He didn't say yes and he didn't say no. He just went over the plan again. You are going to have chemo tomorrow and on the 24th. Then you have a MRI. So he wouldn't guess. He wouldn't say probably. I like that. I rather have a doctor that is sure. Or as sure as he can be. Makes me trust him.

So no surgery date as that won't be determined until I have the MRI.

Other news. My iron is low. So tomorrow I'm getting two infusions of Femara (Sp?) which is iron. Nice thing is that it will be given through my IV. Each infusion will take 30 seconds and because I'm going into forced menopause, this will do it for me with iron for the rest of my life. I will not have to take iron supplements for the rest of my life. Hey something good. My low iron problem will be solved as its something I've been taking supplements for.

You just got to count your blessings:
No more iron problems
Tumor responding at the very best it could from 2 rounds
Get to keep my lymph nodes (this is going to make a big difference for surgery too. Less invasive).
Gained more trust in my doctor
Needing chemo was confirmed and is giving me a major benefit (reduces my chances of reoccurance by over 30%)

Overall, not a bad day at the doctors.

Oh and I just remembered Dr. Barth wants me to try a different regime for managing the bowels this time. Senokot which is natural. Ok. And if I don't move the bowels Friday I'm to go to Miralax. Dang it I think that's the stuff that Mac and I talked about that is plastic. I have to look it up. If I don't go on Saturday then I go to Milk of Mag. But, truth is no I won't because that stuff gave me the gut ache from hell. So I'll give it a shot up til the Milk of Mag then its Metamucil and cherios. Which worked, just not real well. Well, I guess well enough to keep me out of the ER but, its was still unpleasant to move the constipated bowels. Dr. Barth wants me to attempt to avoid that all together. So I will give it a shot.

Wow and I spent 45 minutes with my doctor. That was a lot of information.

Chemo tomorrow. I'll get on here tomorrow to up date on any allergy reaction although they will be giving it to me slowly tomorrow taking up the day so I should be fine. Packing a lunch and plenty of snacks.

I think that's all.

I know I will have lots of love, prayers and positive thoughts and energy with me tomorrow and for that I thank each and everyone of you.

Hugs to all.