did your doctor give you a "risk of reoccurence" specific number?

missrenee said:

Laura, I never asked
I am almost 2 years from diagnosis (Stage 3C), had lumpectomy, re-excision for clear margins, 6 rounds of TAC and 33 rads. I am on Arimidex for the next 4 years. I never asked about percentages of recurrence, metastasis or prognosis and none of my doctors ever volunteered any of that information.

Maybe it's that I just don't want to know or that my hopes are that my odds are better than they actually are--I don't know. Sometimes, I look at it like--if the odds are 1 in 8 of actually getting breast cancer--then odds are that I wasn't going to get it in the first place! (It is my opinion that those odds are actually higher--but maybe I'm just more aware of our pink sisters now).

I think one of the hardest questions right now is when people ask "So--are you okay now?" I really don't know how to answer that. I want to say, "Well, today I am!"

I'll be interested to hear what your docs say if you ask the questions.

Hugs, Renee

I have never asked
howeverI know that I am at high risk due to my age (46) at time of diagnosis and stage III C with 11 positive nodes.
Laura, how is your treatment going? I hope you still have opportunity to meet with your mental support doc.
Hugs
New Flower

butterflylvr said:

Hey Laura,
My Oncologist did give me my numbers but only because I asked. I at the time was contemplating a "single" mastectomy versus the "double" that I ended up going with. All I can remember was she had some type of computer program that she plugged in my biopsy information into. Then factored in my treatment types. I don't remember the exact numbers but it went something like this. If I had done nothing and had no treatment my chance of survival after five years would have been about 50%. Having chemo my odds for mortality after five years would have lowered to 25%. Mastectomy brought those odds down to 15%, after radiation 5% and tamoxifen for five years is an extra boost.

The more weapons in your arsenol the better the odds for nonoccurrence. She told me we can't give you zero but we can get you as close as possible.

Hope I helped somewhat,
Lorrie

Yes, because I had oncotype test and I asked
My oncotype score was 31 and says "Those patients who had a recurrence score of 31 had an average rate of distant recurrence of 21%". According to my oncologist, chemotherapy reduced that by 30-40% (I liked 40%) so my recurrence rate was reduced to 12% with chemo (and I assume Arimidex). These numbers are based on Tamoxifen only for 5 years or Tamoxifen and chemo. In my case it's Arimidex because I'm postmenopausal.

I'm not sure how radiation or mastectomy factors into this number because the Oncotype predictions are based on ER+ Node negative patients treated with 5 years of tamoxifen and doesn't say a word about surgery and/or radiation.

I'm curious now and plan on asking more. I see both my rad onc and med onc in October so I'll ask then. I remember the rad onc saying radiation reduced the recurrence by some amount (I think 30%) so that would take the 12% down to about 8%.

I like the low numbers . . .

Suzanne

Double Whammy said:

Yes, because I had oncotype test and I asked
My oncotype score was 31 and says "Those patients who had a recurrence score of 31 had an average rate of distant recurrence of 21%". According to my oncologist, chemotherapy reduced that by 30-40% (I liked 40%) so my recurrence rate was reduced to 12% with chemo (and I assume Arimidex). These numbers are based on Tamoxifen only for 5 years or Tamoxifen and chemo. In my case it's Arimidex because I'm postmenopausal.

I'm not sure how radiation or mastectomy factors into this number because the Oncotype predictions are based on ER+ Node negative patients treated with 5 years of tamoxifen and doesn't say a word about surgery and/or radiation.

I'm curious now and plan on asking more. I see both my rad onc and med onc in October so I'll ask then. I remember the rad onc saying radiation reduced the recurrence by some amount (I think 30%) so that would take the 12% down to about 8%.

I like the low numbers . . .

Suzanne

Laura..
This what my oncologist told me two yrears ago...with my type, triple negative, no lymph node involvement, clean margins, chemo and radiation my chance of recurrence was 20%.....and as you know, Mine has returned in my lymph nodes...and am taking Xelda and back to rads 5 days a week...i've never asked you why your Oncoligist has you on Xelda now....I thought you were having a recurrence do to the Xeloda....duh here...I'd say you are throwing everything you can, against this beast!
And here you and I go with our weekly routine again....hope you're doing well with the Xeloda....so far so good with me...just fatigue from the combo...and less pain.....

Hugs,Nancy

I never asked Drs - nor did
I never asked Drs - nor did they volunteer odds other than Surgeon the first time I saw him he said I have a 25% change of making it to 5 years post DX - I'm IBC. I've made it 2 yrs so far and riding NED.

%'s don't matter to me as I have a 'different' view of them. They are compilations of everybody - I'm not "everybody - I'm "me, myself and I" and nobody else. My personal odds are either 0% or 100% - I will either have a reoccurance (100%) or I won't (0%). I can not get 20% or any other % as either you have it or you don't (100% or 0%) - no one has 20% (or whatever %) cancer.

That said - I have chosen to keep my port in as knowing that IBC is so aggressive it makes sense to me (and my Dr. to keep it in for 5 yrs just in case it's needed again - I'm ready without having to have another one implanted. It also give me a legit excuse to talk with my PA's RN every month with any questions I have - don't usually have any questions but it's still nice to see her every 4 weeks for the flush. This is going to sound silly but I visualize some things in 'strange' ways. My port is like a Guardian (or sometimes I think of a life vest) standing guard to protect me - the Monster knows not to attack while port is there as it's ready to beat it back again if need be but just because it's there the Monster won't try to attack. Yeah silly way to think but then I'm silly sometimes.

I really can't give you any help on rather or not you should ask about your %s. Only you can know what is right for you. I can see how for some knowing could be a real downer - anticipating the worst. I know that being IBC - to use the odds on charts aren't good but then I'm not figures in a chart.

Good luck with how ever you choose to go with asking the info.

Susan

Laura,
Like everyone here has said, they are just statistics. I was told, at the Huntsman cancer center, that my chances of recurrance were very low, that oncologist said slim to none. She said that chemo was not necessary (after the fact). I saw her for 3 months while my onco was transitioning to private practice. I didn't care for her she was very impersonal, and dismissed any concerns.

My original onco, who I went back to 3 months later, and the one who told me I needed chemo, also told me that because of my history of mega doses of HRT and estrogen prior to my hysterectomy, that my fight may not be over. Unfortunately, he was right.

That test is just compiled statistics, it does not take other factors into play, such as other medical conditions, stress, prior medical issues. However, according to the test, which is what she was going by, I was safe.

You are asking what can help? For me it was walking, eating healthier (I couldn't give up everything), laughter, quit smoking, and setting goals and planning future activities. None of this stopped it from coming back, but I believe that it has given me more time.

So I still plan for the future. I have tickets for 2 concerts in September, and have plans for October, January and next June. My oncologist didn't think I would see much beyond the 2010 holidays. He has no idea how determined I am to see this become a chronic condition, rather than terminal!!

I love that you get up each morning and tell yourself that you are not dying today, before you know it you will be telling yourself on the first of each month that you are not going to die this month, then New Years it will be I am not going to die this year and your time goes on and on.

Prayers go out to you, it does get better as time goes on!

~Carol

I didn't ask
Nor did they offer it. When I went to each doctor's office I stated that "I am going to kick cancer's A$$. I did some research and know the truth for they type I have. I have taken a few more measures because of this but I also consider this. It took two bouts of cancer to kill my grandmother so I am of strong stock. Her first was bc and the second bout was 20 years later. I tell my grandchildren the truth tailored to thier age as I don't want suprises for them. But they all agree I will be around to advise them for years to come.

Heatherbelle said:

Hi Laura
My Dr. did not
Hi Laura
My Dr. did not give me any numbers or percentages, either. But, I've taken it upon myself to read my pathology reports, I've had genetic testing & come up positive for BRCA1, so i pretty much know the statistics that go along with my info. But, i also realize that they are JUST statistics and percentages, and I continue to live my life to the fullest and enjoy my kids every minute. I personally am a bit relieved that I haven't had "that talk" with my onc, but others, like my mom, are the opposite. There's really no right or wrong answer to this, but rather it's what you feel more comfortable with. If you think you would rather know more about your prognosis, then by all means have a talk with your onc about it. That's what they get paid the big bucks for
*hugs*
Heather

My oncologist gave me
My oncologist gave me percentages, but, I don't know that I really believe in them. You got so much for rads, chemo and the estrogen blockers. I didn't take chemo, as, it wasn't recommended for me, but, I did have rads after my lumpectomy.


I just think they are just numbers that they throw in the computer on a program and that is what comes out.

Wishing you good luck!

I wanted to know
Laura, they haven't given me a number, and they don't have the data that would let them quantify my chance of recurrence, but I was very firm that I wanted to know my prognosis. After my first diagnosis and treatment, the chance of recurrence was 4%, so I was pretty surprised when I got breast cancer again! To be fair, it was a completely new tumor, not a leftover of the last one. I even made sure my husband didn't accompany me to the appointment when I had decided to insist on an answer, since he is very invested in my having a good prognosis. But I didn't care what the answer was; I just couldn't stand being in limbo. Fortunately, my prognosis is good -- ER+, PR+, HER-, and nothing on bone or PET scans before chemo. My radiation oncologist says whatever my risk of recurrence is, radiation will cut it by 1/3. (I did have 4 positive nodes.)

You are the only one who can decide how hard to push it. For me, not knowing was worse than bad news (at least I assumed it would be). I think that if my prognosis were poor, I would have been sad, but it would not have caused serious depression or changed much in the way I live. I am pretty steady in my approach.

One of the questions I asked was, "When can I stop waiting for the other shoe to drop? Five years? Ten?" The answer was "You can't." With some other cancers, they can say that if you live five, or however many, years after treatment, you can probably relax. With breast cancer, you never can. It can always come back. Or you can get another tumor. Disappointing, but at least I won't be so stunned if it happens to me a third time!

I can't tell you not to dwell on the negative, because your mind does what it wants to do. I can say that if you can figure out how to avoid being dominated by dark thoughts (and I know it's not easy), it will make everything else you do easier, and you will be more successful at noticing and appreciating those perfect moments that represent the best life has to offer.

skipper54 said:

Never asked, never offered
BUT all along I told everyone that we were going to do whatever it took for me to not be back here in a couple years.

That being said, I did have a conversation with my onc about the organ donor designation on my driver's license and if it could ever be put back. His comment was, "we'll talk about it in 10 years". He has been very positive so I am too. We beat this with God's help and lots of prayer support and I'm focusing on keeping it like this.

I'm listed
I've been listed a an Organ Donor on my DL and Mil. ID for years - I still am. As I understand it - there are some 'things' that are still OK for them to use but not all - so it makes sense to me to be listed and IF anything is useable they'll know what is and what isn't.

Susan

carkris said:

In 1994 I knew my
In 1994 I knew my percentage. In 2009 I specifically did not ask. I knew it was worse as it was diagnosed at a later stage. Because I know myself well, and had experienced this. I knew I would fixate on the number. My opinion the number is only useful to determine what kind of treatment you need. If more likely to occur-more treatment. Right now there is no way to determine who will specifically get distant recurrance, so even if you are more'likely" will you? Nobody knows. For me its not just a physical game, its a mind game. Everyone is different. I dont find the information useful.
I am also suprised when people ask prognosis, (non medical) isnt that a personal question like your income or your weight? having cancer is rather like being pregant some people think that its open season. I will not share that info. In my mind I am ok today and thats all any one of us has.

Is this how it goes?
The surgical oncologist checks your breasts and the mammograms (or MRI) for recurrence or new tumors in the breast (or other breast or remaining tissues/surgical sites), the medical oncologist checks for metastasis to distant organs by whatever means is appropriate for your stage/grade, and (if you had radiation), the radiation oncologist checks for radiation efficacy or damage or side effects?

Suzanne