Risk of new primary cancer

LtotheK

Hi everyone,

As I finish up my radiation after chemo and am staring down the Tamox/AI barrel, I have a question haunting me big time, and I can't seem to zero in on the facts.

"Curing" my current cancer, I realized, is only 1/2 the battle.  I hear stories over and over again of women who get second, and even third new primary tumors.

What is our risk post BC of a new primary tumor, in all likelihood in the opposite breast?

I suppose I'll save my fear of what the stats are like post-10 year projections and recurrence incidence in the five-year timeframe for another time.

I am ER+, 1.2 cm, IDC, grade 3, node negative.  Would like to hear from anyone regardless of type.

catbill

Hi, MHP70-

I look at it this way, all our treatment is supposed to keep us from getting another cancer, and statistics are just numbers, and not totally reliable.   You can slice them a number of different ways.  While oncologists love statistics, keep in mind that cancer is different for every person.  You and I had the same size tumor, the same type of cancer (IDC) and I'm ER+ as well.  We seem very similar at first glance, but our treatment was very different as I was grade 1.  Chemo doesn't work well for grade 1 as you may know, because it grows too slowly, so I had a BMX in the hope of preventing any recurrence.  I was told no rads necessary as I had BMX, and no chemo due to low oncotype {8} and grade 1.  I am on Arimidex.  (I am PR+ as well, and HER2-)  IMHO, it seems like the statisticians couldn't slice the numbers so many different ways, and have them be meaningful to anyone so I just decided not to pay too much attention to statistics.

nikola

Hi,

I think we finished chemo at about same time. My last T/C was almost 9 weeks ago. I was diagnosed in March, had surgery in May and chemo started at the end of July. I had 4 T/C, no radiation. I choose mastectomy as was told I had 2 cancers. After mastectomy they told me I had third one as well, only 0.2 cm, small one. I am wondering now if I did not choose mastectomy maybe that one would never be removed and would come back later as reoccurence. Still no hormonal Tx for me as having clotting problems. Considering ovary removal now. I was happy when told I was ER positive but now I cannot take Tamoxifen and time is passing by each day and I am wondering if I am being too late. I was late for chemo as well as we were waiting for Her2 results toolong. I started chemo couple days before 12 weeks mark. Never had oncotype, so I am hoping that chemo was right decision for me.

I guess lots of worries and questions and so little answers.

LtotheK

I think both of you are so right and make me realize we could spend the rest of our lives in needless worry.  To add another layer:  while I was grade 3, my Oncotype was 12 (currently borderline low). That was not expected.  I was also node-negative and had widely clean margins.  More spin!

I think the reason I dwell is realizing it is a huge crap shoot, and they simply don't know all that much.  It is scary, I hope the future holds more than these hormonal treatments for ER+ patients.  I have very serious concern about their long-term effects, considering my relative young age for this disease.

Regarding the additional tumor, Nikola, this is a common story.  Some doctors believe, just like DCIS, these tumors would actually never become anything, but I must say, I wonder all the time what it would have been like had I chosen mastectomy.  I will tell you many of the long-term survivors I know when the mastectomy route.

Just for general information, I did find out that the risk of a second primary tumor (not a recurrence) is about 1% a year. No wonder so many women get new primaries, that's a whopping 30% over 30 years (how much longer I aspire to live!)

Thank you gorgeous gals for replies. It sounds corny, but I'm so fond of all of you even over the internet.

Nikola, I'm sure you have heard that Vitamin D acts quite like the hormonals in trolling for rogue cells--so make sure you are 60+.  Also, there seems to be good evidence about Iodine.  The studies on exercise also show it is a hormone modulator.  There are plenty of wonderful things you can do to protect yourself.

And one other thing...I think we are both struggling with hair growth.  I have the weirdest fuzz.  I really don't want to start Tamoxifen, as I'm concerned it will stop hair growth.  However, it is time, my life is more important than hair. Repeat three times, I'm not really believing it right now when all I want is to feel a little bit like a woman again.

nikola

I hear You re: hair. Since it started to grow a bit I cannot wait to be done with wig. I am getting really good comments for my wig from people who do not know about cancer so I am telling my husband that once I go wig-less everybody would wander if I got sick.

I am taking Vit D, 5000ui daily.

I noticed You know a lot about Europe. Do You have family there? I am originally from there.

LtotheK

Nikola,

I know a lot about Eastern Europe and the Balkans, I work there part of the year.

I have been keeping my hair buzzed for neatness, and have noticed it feels considerably more like hair than it did a few weeks ago.  However, I'm still quite bummed I don't have full coverage, had hoped to have that before starting stinky Tamox!

I just can't wear a wig.  It's too hot and I have too many hot flashes.

Where are you from?

nikola

I am from Croatia, came to Canada in 1994. There is a huge difference between health system, education, life style....everything. But, I am glad I am here.

I am still waiting for my onc to see re: ovary removal or some other Tx. I did not get my period back yet, my last one was beginning of August. I gained 15-20 pounds during chemo and they are slowly comming down. Very slowly.

My DH suggested yesterday to get my hair buzzed but I guess I am afraid it will not come back. I know it would, but still.

Here is -27 with windchill so I am not hot when outside, but at home I am wigless. Too many hot flashes, too.

LtotheK

It will absolutely come back, Nikola.  I promise you it looks so much cleaner and nicer than the patchy mess that comes out in varying lengths!! 

I gained 7 lbs during my last treatment.  It was very bizarre and disconcerting.  I went on a great cleanse with my naturopath. I know there is lots of question about the efficacy of cleanses and L-glutamine, for instance, but I happened to have no neuropathy and lost my chemo weight right after the cleanse.  Perhaps coincidence, I'll take it!

gogaserbia

TO NIKOLA:may I feel free to pm you?

nikola

gogaserbia,

Yes, of course. I

eileen1955

MH; it really does depend on the type, acccording to what I was told.   You had ductal cancer, which is supposed to only recur in the same breast.    I too had IDC but there was some abnormal activity in the lobes and that put me at higher risk of cancer in the opposite breast. 

there's probably a whole lot more to be said. But this was my case, as described by a prominent oncologist, and upon which I based my decision to have prev bil MX.         But that's just what worked for me given the info I had.     Turned out my post-op report showed two totally clear breasts. At first I felt foolish, but there was no way to know for sure.     and who knows how long they would have stayed cancer-free?            Admittedly, I am a cancer-phobe b/c my father had colon cancer when I was a teen.     So I'm a bit obsessed with preventing it.          

LtotheK

Eileen, I certainly appreciate information I've never heard before. I can't understand why IDC would only come back in the same breast compared to other cancers, but I certainly like that idea.  I guess the simple fact is, I don't know why someone would get cancer in one breast or the other!

Please don't feel foolish. We are all throwing darts in the dark. Today I got fitted for a lymphedema sleeve.  I don't have it actively, and the community is absolutely split in half about whether getting a sleeve will cause or prevent it in my case.  We are all doing the very best we can with the info we've got.

Congratulations for being a 7+ year survivor.

eileen1955

Here's my understanding; duct cancer spreads withing the duct system of one breast.   It's mechanical, sorta?   But lobe cancer is apparently controlled by other factors (hormonal?) so if you have it in one breast then you are more likely to get it in the opposite breasts.

I could have dealt with that; but my breasts are dense.   All I can say is I am happy with my decision. 

LtotheK

Eileen, I would have done same, if that helps at all.  I had a very, very difficult decision to make with chemo.  I think in the next year or two, it will be shown that I was overtreated.  Well, there's nothing like being UNDER treated.  So I'm cool with that.

My breasts are also crazy dense.  One of the theories for cancer is that dense tissue is like fertilizer for cancer.

eileen1955

The chemo that I had seven yrs ago was considered "recreational chemo" by some breast cancer survivors.  I was in a group of survivors and we were not separated by stages.    There was so much anger in that group and it was leaderless!!          Needless to say, I never went back.  

All I can do is make the best decision I can with the info I have on hand. that's all any of us can do.       there could have been cancers lurking in my breast tissue that was sent to pathology after my recent mastectomy.     

I didn't know the dense tissue was "like fertilizer";   I thought it was the issue of "trying to find a needle in a haystack" with imaging techniques.

Anyway, I am celebrating my 7 yrs of survivorship. There are many of us out here; but we usually have moved on in our lives and would not be posting on this website.           

lago

Yes I have heard the same thing. Breast cancer seems to thrive in dense breast tissue. I think it's just a strong theory though.

Beesie

There is a difference between the recurrence of the original cancer, which tends to only happen in the same breast, versus the development of a new breast cancer, which can happen in either breast. I believe that Eileen's comments about ductal cancer vs. lobular cancer are sort of combining factors related to recurrence risk and factors relating to contralateral (opposite breast) new cancer risk. 

What my oncologist told me, and what I know that other women on this board have also been told, is that once any of us have been diagnosed with BC one time, our risk to get it again increases. I believe that the reason for this is simply that if our bodies have allowed the development of BC one time (for whatever reason or whatever cause), it is therefore assumed that there is a greater risk that our bodies may allow BC to develop again. I don't think our increased risk is based on anything more specific than that - it's just an assumption.  For some of us, the assumption will be correct; for others, the assumption will be wrong.

What I was told is that our new primary risk is about double that of the average women who's the same age (recognizing that annual risk increases as we age).  Others have been told that the risk level is approx. 0.5% (a 1/2 a percent) per year.  Of course, the risk that each of us faces as individuals will vary, depending on personal factors such as family history, whether we are BRCA positive or have extremely dense breast tissue, our age, etc. etc..  In my case, I was 49 when diagnosed.  The average 49 year old has about an 11% risk of getting breast cancer over the remaining years of her life (to age 90).  So for me, my risk was 22%.  That worked out to an average risk of 0.54% per year (every year till I'm 90). Of course however my actual annual risk is lower when I'm younger and it will be higher when I'm older, just as it is for all women, whether they've had BC or not.  On the other hand, my lifetime risk will go down every year that I am not diagnosed, simply because there are fewer years left till I'm 90.

To my understanding, the type of cancer that we had the first time, our specific diagnosis, makes no difference to this at all; we all face this same increase in risk, whether we had DCIS or were Stage III.   The fact is that if we get BC again, it might be a different type, it might be caught when it's less advanced or more advanced, it might be more aggressive or less aggressive. I have seen many women on this site who've been diagnosed with a different type of cancer the second time around.  To Eileen's point however, I believe that those who have lobular cancer may be more likely to get lobular cancer again, if they are diagnosed a 2nd time.  But I don't know that their actual risk is any higher than the risk faced by someone who had ductal cancer (but please someone correct me on this if you know differently).  

Although it's concerning to know that my risk to get BC again is double that of the average woman, if my oncologist had not told me that my risk was 22%, I would probably have pegged it to be a lot higher - probably around 40%. So for me, this was actually good news.  I viewed it not so much as a 22% risk that I'd get BC again, but a 78% chance that I wouldn't.  That sounds pretty good to me.  And as each year goes by and I am not diagnosed, I celebrate because I know that my lifetime risk is going down.  Now, 5 years after my diagnosis, my lifetime risk to be diagnosed again is no longer 22%; now it's about 19%. 

Hope that all makes sense.

LtotheK

I've also heard that DCIS has a tendency to muddy the statistics--that DCIS survival is lumped (pun intended?) into the survival stats for IDC patients, for instance. Thank you Beesey for this, it is a lot to contemplate, and a lot of great info!

Beesie

That may be true for survival stats - although a lot of the stats I've seen talk about "invasive cancer" and separate out DCIS - but when it comes to the risk of getting a new BC, the DCIS women and everyone else are all in the same boat, with the same risks. 

LtotheK

Interesting, Beesie!  Still learning...