Need to make a decision weighing risk factors

Triciamomof3

I  am a 46 mother of three and was just diagnosed with DCIS stage 0 about a month and a half ago. Still in shock, so forgive me if I ramble. not sure what the grade is. She told me, im sure, but don't remember. Estrogen AND progesterone negative which I don't see very ofter with DCIS. That worries me. I also have 2nd degree relatives diagnosed (aunt and cousin) as well as very dense breasts. I have been doing so much research and have learned a lot, but also overwhelmed.  I need to make a decision on which surgery to have. Lumpectomy with radiation or mastectomy ( I would do double if I chose mastectomy). 

I know that DCIS stage 0 alone, when removed with lumpectomy with radiation has a slightly higher recurrence rate than mastectomy. And both have an almost 100% 10 year survival rate.  I am trying to put all of my risk factors together to decide if my recurrence chances and or new primary chances are enough to have a double mastectomy.  I know the decision is mine and everyone tells me to make the best decision for me and my family. But honestly,  I am torn. I don't want to lose my breasts. I will if my chances increase significantly with all of my risk factors. But then,  if i have a lumpectomy with radiation, I don't know if I will be able stop wondering and worring about it coming back or was missed in the other breast. Especially after reading many posts about women having a double mastectomy and their pathology reports show things they didn't even know they had.

I guess I am wanting to know how much do my risk factors increase my chances of recurrence or new in the other breast. Especially the er & pr negative. 

Again sorry for rambling. I just have so much going through my mind and I cannot decide which surgery to have.

reomedic

I am 49 mother of 2. I was diagnosed in May with DCIS stage 0 and estrogen positive. I don't know what your chances for recurrence are. I can only share that I choose to have a bilateral mastectomy in July. I had dense breast, 2 previous biopsy that were negative, and my mother who is a breast cancer survivor. She had a mastectomy at the age of 44. For me it was easier to have a mastectomy with reconstruction and not have to worry about recurrence or did they miss something. Mostly I was scared of radiation and what could it do to my body down the road. I am scheduled for my tissue expander removal and breast implants next month. I can say that my breast look better than they did before, I nursed my children for 4 years. I am lucky that I was able to have nipple sparing mastectomy and my incision is in the crease of my breasts (inframammary).

What helped me was when I was interviewing surgeons I asked if I was their sister or mother what would they recommend. The breast surgeons should be able to give you more facts to help with your decision. I was also able to meet with plastic surgeons, oncologist, and radiation oncologist help inform me about choices.

LAstar

The grade of the DCIS is a very important aspect of determining your treatment plan. High-grade DCIS had a higher probability of becoming invasive than low grade. I'm not sure if this affects the probability of a primary occurrence inn the other breast. Thus should be included in your pathology report.

laura11103

I can tell you I had high grade DCIS (with 1 mm microinvasion), er and pr negative in my right breast... my DCIS was multifocal so I had to get a mastectomy but I did choose to do a double when I had no cancer in the left... my radiologist told me he thought I made the right decision for one reason that if I did get it in my left breast it would be harder to treat due to the er and pr status...  I haven't had a single regret and feeling awesome... mastectomy is not fun but its not as bad as I ever imagined it would be... and now I look great, no one would ever know and frankly, I love my new foobs lol...

Good luck with your decision, I know its not easy... xoxo

dogsandjogs

I was told once that anyone who has had breast cancer has a 20 percent probability of getting it again . Not sure if that figure is correct, but there is more of a chance than if you had never bad breast cancer.

I got a new primary in the other breast 28 years after the first one.

Annette47

Dogsandjogs - I've seen that before, although my MO said it's cumulative per year but tends to top out between 15-20% risk. What I wonder though, is does that replace the original risk or add to it? For example, before being diagnosed, I already (family history, early periods, late pregnancies, etc) had a 20% lifetime risk. So would I now have a 35-40% risk or would it still be at that 15-20%? And yes, I know that no one can know anyone's exact risk for sure, I was just wondering how the numbers are supposed to work.

dogsandjogs

Hm---I wonder!!

dogsandjogs

My mother in law had mets to her bones (diagnosed after 25 years). Doesn't the risk go down with age? She was completely dumbfounded as she had the old type mammogram done (in the 1950s) where they took the muscles too - her chest was completely concave.

dogsandjogs

Oops, meant to say mastectomy not mammogram!

Emaline

I was ER/PR + so I am not sure how I would feel if I had been negative. Honestly my doctor, since it was DCIS, wasn't that concerned about it. We talked about it more when it came time to talk about Tamoxifen. I had a unilateral mastectomy and I don't regret it. While my fake breast looks great, it feels awful. At least to me. I have no feeling there from armpit halfway down my side and straight across to the middle of my chest. I am told that it may come back but no one can say for certain. I did get a reduction/lift on my right side, and that I love and could go on all day about I don't necessarily regret my choice of a mastectomy but it is very drastic.

People ask me if I worry about cancer coming back in my right breast and really I am not. I know there is risk but there is risk if you get a double mastectomy as well. Recurrence is what really scares me and if I get a recurrence, it will happen in my left breast and that is when things get really scary. Unfortunately there is nothing we can do take away that risk of recurrence 100%.

dogsandjogs

Emaline, if you get cancer in the other breast it will not be a recurrence, but a new primary. That is what happened to me 28 years after my mastectomy and reconstruction. To say I was dumbfounded is an understatement. After 28 years I get a NEW cancer. Isn't one enough? But as the onc said;this is better than a recurrence.

Annette47

It's interesting, but I find myself more worried about the possibility of a new primary in the other breast than a recurrence. Even though a recurrence would be more serious, for some reason it feels less likely (denial, maybe?). Dogsandjogs - that really stinks - I would think you would have felt pretty "safe" by that time! 28 years feels like such a long time, but if I get a new cancer 28 years from now, I'll still be 2 years younger than my mom was when she got her first one!

jg10

Tricia,

I have a friend who was diagnosed with estrogen and progesterone negative DCIS, which she chose to see as lucky at that stage, DCIS has a great prognosis. Have you considered genetic testing with such a strong family history? That might be a good place to start with decision making. Aside from that, my biggest concern is your dense tissue. At your ages you should have less dense tissue, and since you have so much of it, screenings might be particularly challenging. My breast cancer was not aggressive and was a slow grower, which is good--dense tissue kept it from being diagnosed for years. Dense tissue not only increases diagnosis challenges, it is also a breast cancer risk factor. Good luck making your difficult decision. Once you do your homework follow your instincts.

min937

Tricia - I arrived at my decision through a process of research and elimination. My DCIS was multi-focal, so I needed a mastectomy because a lumpectomy would not have left a good cosmetic outcome. So, unilateral or bilateral? I looked at the grade of the DCIS, but my Dr also ordered the BRCA test. That came back negative (a positive result would have convinced me to do a bilateral mastectomy). I still chose a bilateral because I wanted to reduce my chance of a primary BC in the other breast, and I also wanted the reconstructed breasts to look and feel similar (might sound vain, but I'm a little OCD about symmetry . I also had very dense breast tissue, which made me nervous about trusting imaging to find any possible future tumors on my non-cancer side. You may arrive at a different decision after considering all of your individual factors, but you'll know you made the right decision for YOU. I went into it thinking it was all black and white. Ha! I sure got an education fast . Good luck to you!

Beesie

Whether we've had breast cancer before or not (DCIS or invasive), we are all women so we all face the risk of breast cancer in the future (even if we've had a BMX - there's still about 3% of the breast tissue left). The fact that we've been diagnosed one time in fact increases our risk to be diagnosed again simply because whatever it was that allowed for the development of breast cancer one time might allow for the development of breast cancer another time. So except in cases where there is a known cause (a BRCA mutation, for example), it's a very non-specific and difficult to quantify risk.

The grade of one's current diagnosis, or even whether it's DCIS or invasive, does not impact your risk to be diagnosed again in the other breast (or the same breast, if we are talking about a new primary and not a recurrence). If you are diagnosed again, it's a completely different cancer. It might be a different grade, a different hormone status or even a different type of breast cancer. With a few exceptions, our current breast cancer does not affect our next breast cancer (which hopefully most of us won't ever get).

How much one's risk to be diagnosed again is increased depends on many factors, including age, personal health history, family history, etc.. My oncologist told me that on average, the risk for someone previously diagnosed is about double that of an average non-diagnosed woman of the same age. I was 49 when I was diagnosed; the average 49% has an 11% remaining lifetime risk that she'll be diagnosed with breast cancer at some point in her life (often estimated to the age of 90) - so that put my risk at about 22%. Remaining lifetime risk does not go up over time; in fact as we get older, our remaining lifetime risk goes down, simply because we have fewer years left in our remaining lifetimes. I'm 8 years past diagnosis; whereas I had 41 years to the age of 90 back when I was diagnosed, now I have just 33 years till I'm 90. So my remaining lifetime risk is down to about 18% (vs. the average 57 year old who has a remaining lifetime risk of 9%). Of course, "double the average risk" doesn't apply to everyone - if you have very few risk factors, your risk may be lower, and if you have many risk factors, your risk may be higher. I've seen some articles and studies that put the risk level at a much lower level than double the average, but I've seen others that put the risk higher.

Although remaining lifetime risk goes down as we get older, our annual risk goes up as we age. For each of the 10 years that we are in our 40s, the average woman has about a 0.15% chance of being diagnosed each year (more accurately, 0.15% is the average for the entire 10 years of our 40s and our annual risk is lower in our early 40s and higher in our late 40s). In our 50s, the average annual risk is 0.24%. In our 60s, it's 0.36%. And in our 70s, 0.38%. In our 80s, our risk starts to drop off considerably. Using my oncologist's "double the average risk" rule, it means that for someone who's had breast cancer, the annual risk would be about double each of those numbers.

The reason that it is sometimes said that our increased risk is "cumulative every year" is because every year, the increase in risk that we face is added on top of the base level of risk. If the average annual risk of someone who is 57 is 0.28%, and if my risk is double that, it means that my risk is 0.28% + 0.28%. Next year, if the average risk of someone who is 58 is 0.30%, my risk will be 0.30% + 0.30%. So my risk is "cumulative every year". But "cumulative every year" doesn't mean that if my risk is 0.56% this year, next year my risk will be 1.16% (the addition of my risk this year and my risk next year). That's not how risk works. When I'm no longer 57, I don't have to worry about the risk I had when I was 57. I leave that risk behind when I turn 58 and I only have to deal with the risk of being 58. A simple analogy is to consider that you can't have car accident tomorrow for whatever the road conditions were today. If you made it home safely today, you no longer have to worry about today's road conditions. Tomorrow, you worry only about tomorrow's road conditions.

Hope that makes some sense!

deb1973

Hi Tricia,

I am so sorry you have this tough decision to make. It is deflating to get this diagnosis. Your post hit home because I am also one of those seemingly rare cases of DCIS where the hormone receptor status is estrogen negative. I am also a young mom who just turned forty. I was gasping for air when I was first diagnosed and still have dark moments, but what helps is trying to be as proactive as possible. As Beesie said, try not to think about everyone else's path, but focus on yourself as you weigh your treatment options.

The fact that you have the option of a lumpectomy is positive news. I had a bilateral mastectomy that was partially dictated by the size of my cancer and have healed well and received excellent care and support. Whatever choice you make, it makes all the difference to have good doctors who have earned your trust by showing intellectual engagement, intelligence, compassion, etc.

I'm still in the process of refining my post-treatment strategy, but, as one of the other posters suggested for you, I have had full genetic testing (it's amazing that what's available now wasn't even an option when I was first diagnosed in April); hired a very thorough primary care doctor; started to work out seven days a week (on my PCP's advice); and have made tweaks to my diet, etc., like cutting out added sugar, etc. I know there are plenty of people who do all of these things and still have things happen, but, as I said, being proactive is my best therapy.

I hate the enigmas of this disease, but, as seen w/ the advances in genetic testing, the science is constantly progressing, and, as you know, the overall prognosis for DCIS is very favorable.

Hugs,

Deb

p.s. To address your question of the bearing of age and ER status on recurrence, etc., I wanted to suggest consulting w/ Dr. Lagios, a pathologist who specializes in DCIS.one of the big advantages of working with him is that he is available to talk and answer questions over the phone. He also utilizes the Van Nuys prognostic scale to predict your risk of recurrence after breast-conserving treatment. Although I'm not sure that I completely embrace the VNPI, I found talking to him to be very helpful. He is a very patient-centered doctor & our discussion gave me a greater understanding of the nuances of my particular "weird DCIS.