Does anyone ever have IDC and not have adjuvant treatment?

I don't think anyone WANTS to do any of this but when I was going through all my postop pathology with my BS he wouldn't tell me what to do but suggested that with a 1mm grade 2 tumor that was found during the pathology process along with the 3 other tumors that were well differentiated that the there was a POSSIBILITY that a single cell broke loose and was floating around and COULD cause problems down the road. I think the 100% sure of recurrence mentioned above was misinterpreted to mean that yes it is possible a cell broke loose and traveled through the blood stream not the nodes. My BS and Onc did not push me to do anything but did remind me that chemo now is a preventative treatment where down the road its a game of catch up. I was so against Chemo after surgery I just wanted to get my life back. I said to my doc I would be devasted to do chemo and go through surgery and all this and still end up with cancer down the road. MY Onc then said well how would you feel if you didn't do all that you could and got cancer down the road. Its always hard to know if you're doing the right thing, but with two teenage nieces I wanted to do all I could. I already have a very healthy diet and exercise regularly. My cancer is fueled by estrogen so Tamoxifen is an evil necessity. My onc did said it's still preventative so if I hate it or have terrible side effects we can think of something else. I have to say in making the decision for treatment my BS PS and Onc know that I don't really have anyone to make these decisions with so they spent a LOT of time talking me through it. MY BS also did a mortality risk assessment that showed the statistics with MY exact tumor markers etc to see where I fell in the group for recurrence and death from cancer and even though it looks like a small number I wanted to be on the other side of those statistics. I just completed 4 rounds of TC and tolerated the treatments well.

It's definitely about doing what makes you feel comfortable and helps you move on. I am a worrier so even though I had a 90% chance of NOT having a recurrence...all I could think about was that damn 10%. So far the odds have not been in my favor...I'm hoping this time I'm on the good side of the stats.

Zachsmom....I know, I know...but I don't want to file anything against my ex-oncologist.  I'm not wasting any more of my valuable time on that oncologist.

I have not been back since the incident about the Tamox and the CYP2D6 test results.  At that visit, I had asked if when they drew blood if they could also check my 25 OH for D3 and they said they only do blood tests that relate to cancer. Hello?  Also, I have since learned that my PCP Internist runs 3 cancer marker tests instead of just the one that oncologist does so I am now having that bloodwork done by him.  The oncologist's nurse even put the wrist BP monitor on backwards.  If that isn't enough.....even though she ordered the OncotypeDX after much begging.....they "couldn't find the results" when I called.  My next appt was over a month away.  Genomic Health had told me the results had been sent so I called them back and authorized them to send them to one of my other docs.  When I asked for it there, they gave me my exciting results that my OncotypeDX score is 0.  When I went to the onco the next month, she gave me the results and that is when she gave me the prescription for Tamox and refused to order the CYP2D6 test.  The next appt was my last.

I know docs disagree about what to do if someone is missing only one allele on the CYP2D6 gene.  Some double the dose of Tamox since these folks are considered intermediate metabolizers.  But, I can't see how there would be any disagreement about what to do if a person is missing both alleles on that gene.  Clearly, Tamox wouldn't work at all for them.  Neither would benedril and a host of other drugs.

I so wish I had an oncologist that I could trust with my life.  But, with my stats apparently there really isn't any follow up except the blood marker tests.

Zachsmom....Just another comment.

I know the function of Tamox is different than aromatase inhibitors.  I am post menopausal, so even though my onco recommended Tamox...a doctor at Johns Hopkins that I corresponded with as well as all my other research said that the ideal medical approach is to put a post menopausal woman on an AI. Even the Genomic Health guy I spoke with thought the results on the Oncotype test would be better if an AI was assumed instead of Tamox...but when the testing began Tamox was the drug of choice so the research was done using that.

I opted out of the AIs but have lowered my estradiol to 15 using natural aromatase inhibitors.  I don't know of anyone on AIs whose docs check their estrogen levels so I don't know how low they hope the AIs lower estradiol.  I don't know what the goal should be.  My holistic gyno is happy with my level of 15.

If the goal of Tamox is to get on the estrogen receptors to beat the "bad" estrogens from getting there sort of like in musical chairs....then I guess the question is whether the Tamox will block all of them from fueling a potential "cell that got away". 

You can also do some research on the body's Natural Killer Cells and the body's way of killing off wayward cells.  The body has many ways of doing this, but for those of us who have had cancer...our body obviously failed.  So, the first question is will there be changes in your life that might encourage a different result.

All I can recommend to anyone is.....Research and research and research again.  Pray and pray and listen for that inner voice.  I did this over and over about chemo, Tamox, AIs...all my going natural decisions.  I listened carefully to see if I ever got that feeling that maybe I should be doing one of those things.  Every inner feeling/intuition said NO.  Not even maybe...just a resounding NO.  So I went with it.   I am completely comfortable with all my decisions.  I just wish I could have completed all the research faster.  I am still tweeking my supplement regimen and just as I think I have picked the perfect supplement, I read something about a better one.

There is no one right answer.  There is no guarantee either way.  Just think of all the people who ate perfectly, never drank, never smoked and did everthing right and still got this horrid disease.  There are women in every treatment protocol for whom it worked and for whom it did not.  If you have a doctor that you trust completely, then you could just do whatever he/she says.  If not, then you must choose.  No matter what you choose as far as Tamox and chemo are concerned....I still highly recommend that you read through the Natural Girls thread.  There is a wealth of info there that will help you decide which things you want to google further.  There are women there who have  had every kind of treatment offered.

I know this is hard and I am truly sorry that you must do this.

This has been an interesting discussion.

I wanted to say one thing in response to Lori, who said about tamoxifen.   ".. I chose not take any more hormones as I strongly believe it was the hormones that caused my cancer to begin with."

Tamoxifen is NOT a hormone.  It blocks hormones - it's an estrogen blocker. So, if you believe your hormones caused your cancer than you may want to consider tamoxifen.  I hope I misunderstood your comment.  If you choose not to take it because statistically you felt it wasn't necessary, then I can understand it.  For me, it's been the hardest part of treatment.

I believe people should make whatever decision is right for them, based on good information and a good understanding of the information you are presented with.  Most of us are not statisticians and figuring odds is much more complicated than it's made out to be.

I also wanted to add that not doing chemo was never presented as an option in my case, with my relatively large tumor, relatively young age, and HER2+ status.  However, I didn't want to refuse it anyway.

Chemo, for me, was not very difficult.  I worked, I went on field trips with my young son.  I lived my life.  I was more tired than normal but it was very manageable.   Your hair does fall out.  I didn't wear a wig because I couldn't stand them. I wore scarves.  Nobody treated me any diifferently that I could tell, not people I knew and not strangers.  It was almost like nobody noticed, or they thought my scarves were just a fashion statement.  It was so not a big deal.  My hair is growing in now - it's about one inch all around.  I get compliments on it, even the color, which is silver. (I'd been dying it for years, a lovely auburn color).  I never would have cut my hair this short - ever.  I thought I was too ugly for it. But, I actually kind of like it.  

I have had no after effects.  Chemo -chemo brain was short-lived - maybe a month of forgetting stuff.  I took notes at work, knowing I might not remember.    No neuropathy, nothing.  I had some during chemo and once it was over, the neuropathy disappeared.    I'm fine now.

Make your decision based on all the factors that you are aware of, and doctor's recommendations.  Get another opinion, if necessary.  

I recommend leaving fear of chemo out of the equation (if that's in the equation). A few people have trouble with it, yes.  But, most don't.  I was, by far, the youngest person in that chemo room  - most people were in their 70s and 80s.  If they can handle it, that says something. Plus, we all have different chemos - so find out what kind you might need before you say yes or no.  

I like the person's signature that says we can all make informed choices without them being the same choices.  This is very true - keyword being informed.

Good luck with your decision, I know it's a difficult one. Whichever you choose, make sure you can be at peace with it.   I can't imagine anything worse than regrets.

NMI    No the CYP2D6 test is not just for pre-menopausal.  I am post meno.  The only reason my ex-onco recommended Tamox is this.....once I finally had my Oncotype results, since the test assumed Tamox..my ex-onco said I should do Tamox.   Most oncologists recommend AIs for post meno unless they cannot tolerate them or other medical considerations.

CYP2D6 blood test determines if you have both alleles on that gene or just one or none.  People who have the normal 2 alleles are said to be "extensive metabolizers" of Tamox (to me that would just be "normal" metabolizers of the drug but that's just me).  One allele means half or "intermediate" and no alleles is "poor metabolizer" ( to me that would be 0). 

My onco said no to the test because "Tamoxifen works for everyone".  Many docs do not agree with that. Many don't know what happens if you don't have both alleles.  Some double the dose for intermediate metabolizers.  Many wouldn't dream of putting people through the side effects if they are missing both alleles.

There is a huge list on line of drugs like Benedryl that use the CYP2D6 gene for uptake.  I assume that Benedryl doesn't work as well for me as others because I am missing one of the alleles.  There are a bunch of CYP---  genes that various nutrients ride on.  Just like CoQ 10 needs some LDL Cholesterol to get around on in our bodies.

Anyway, I found out about the CYP2D6 gene from the wonderful ladies on these threads.  Then I researched it.  Then I asked for it.  Otherwise, I would not have had a very important piece of information for my decision making.  There are others on these threads who have said their doctors don't believe in the test and don't recommend it.  So, it isn't unanimous.  But then, what in this nasty business is?

But remember, I was dealing with a doc who did not want to order the OncotypeDX test.  The only reason I knew to research that and ultimately begged and begged her to order it was because someone I know said the major cancer center she went to automatically ordered it for her and then called her to congratulate her with a "Congratulations, you don't need chemo!" on her score of 16.  So, I was already having trust issues about which tests weren't really needed when she said no to the CYP2D6 test.

Google is your friend!

Typically, there would be no reason for chemo in DCIS and especially in stage 0.  There are many ways to negate estrogen in the body.  Nutritionally, Lugol's iodine, etc.   I would encourage you to do much research and trust that the right information will come to you.

 Good Luck! 

Interesting Susie, I'm on oxycodone and hydromorphone every day, twice a day. I don't get "high" or sleepy, but just give me 2 Ibuprophen and I'm down for the count! Too funny.

The reason I ask is that nmi says she has no side effects so she isn't doing the other test because the Arimidex must be working.

I never thought that until I read the post above by nmi saying she has "little to now S/E so doesn't see the need to take another test".

If it is a pain in your right shoulder, have you had your liver checked recently? Someone else on the board had that (she's stage iv too) and it ended up being her liver mets....

Ah, so that's the test for metabolizing Tamoxifen and you're wondering if that test would let you know if you're metabolizing Arimidex? Is that it?

Hi, I just wanted to jump in with a comment on the orignal topic... zachsmom, you don't mention your Her2 status, and that is critical.  A few of the other women who commented previously were Her2 positive like me, and for us chemo is an absolute must.  Lisa34, I'm so sorry you had a recurrence, did they test your DCIS for Her2?  Also for the poster whose Dr said she was 100% sure the cancer would recur without chemo, notice that she was Her2+.  My BS/onc didn't even bother with oncotype test once they knew my Her2 status even though I had a very small, early stage IDC. The Dr's aren't being dramatic; this is a tricky breast cancer and even the tiniest tumors tent to recur without aggressive treatment.  I feel very fortunate to have the TCH chemo protocol available.

My chemo is done- 6 cycles of TCH, and I'll still be doing herceptin every three weeks for the rest of the year.  Chemo wasn't too bad at all, my experience was very similar to CoolBreeze.  I'll start 7 weeks of radiation in August.  

Best of luck to you.