Anyone w/ DCIS choose NOT to have reexcision?

Hi Julia,

   We did have a young mother on this site who had a mastectomy and reconstruction with tissue expanders.  She experienced a lot of pain with the tissue expanders.  In addition to this pain, she also had other longstanding physical problems that caused her great pain when trying to lift her young child.  Not being able to lift her baby caused her a lot of emotional and physical anguish.  Keep in mind that her preexisting situation added tremendously to the pain she suffered with the tissue expanders.

Hugs,

Bren

Julia, I remember reading some time after my first surgery that when skin is cut, it takes 6 weeks for the rejoined skin to regain 90% of it's original strength.  This is why whenever someone has surgery - of any type - in which there is a large incision, they are sent home with clear instructions to not do any heavy lifting, no reaching, etc. for 6 weeks - they aren't supposed to do anything that will strain the incision.  In fact, after my exchange surgery, when I had the implant put in, my PS warned me that I would be feeling great within a few days (and I was) but that the 6 week rule still applied because of concerns about tearing apart the incision.  So if you decide to have a mastectomy without immediate reconstruction, unless you are very unusual, you should be good to go - and do anything you please - after 6 weeks.  Even if you decide to have an expander put in, for many of us it's a very manageable process with little pain and no restrictions. But as the others have said, with reconstruction there is more risk that you could have problems so the safest bet is to have a mastectomy only with no immediate reconstruction.  Reconstruction can always be done later, even years later, if you decide that's what you want.

As for diet, putting my researcher hat back on (sorry folks!), there have been many studies that have shown that elements of diet do in fact increase the risk of breast cancer.  Usually the impact is quite small - those are studies that often present using relative risk because it's more impressive to say that there was 50% increase rather than to say that 4 more women out of 100 were affected. And usually these studies are controversial because with self-reporting and with so many lifestyle and personal health & genetic variables that can't be controlled, it's virtually impossible to conclude definitively that it was diet that caused the difference in results between one group and the other.  I also don't believe that a pure causal effect has ever been proven between diet and breast cancer.  In other words, while it's known that a slightly higher percentage of women who consume alcohol (for example) will get breast cancer, there is no suggestion that alcohol alone actually causes breast cancer.  Instead, it appears that elements of diet, together with other factors (either within an individual's genetic make-up or within their environment), may trigger the formation or growth of cancer.  This is why there are many women who consume lots of alcohol who still don't get breast cancer.  And it's why even within the China study, some women still were diagnosed with breast cancer.  You can have the perfect diet & the healthiest lifestyle and still be diagnosed with breast cancer.

Personally (no research here, just my opinion) I believe that there are hundreds and possibly thousands of factors that lead to the development of breast cancer.  Some (diet, for example) can be almost fully controlled, others (environmental factors, for example) can be only partially controlled and still others (genetic background) can't be controlled at all.  My belief is that for each of us, the combination of factors that caused our cancer is different and there is simply no way to know what the exact combination was or whether the cancer was caused entirely by external factors that can be controlled, or whether at least one of the triggers was outside of our control. That's why I understand when people say that breast cancer is random.  I don't really think it is but I think it's virtually impossible to know which unique combination of factors triggered the cancer in each of us.  So in that sense, it appears random.

Back to research then.... Even if there was a study on the impact of an aggressive anti-cancer diet and even if it showed that this diet significantly reduced recurrence and new cancer risk, there is no way to know for whom this diet would be effective.  As a group it might reduce our overall cancer rate but any one of us could still have a recurrence or develop a new cancer.  Research is great at telling us what may happen to a large group but it's completely useless in telling us what will happen to any one individual.

As I see it, what this means is that if you choose to aggressively pursue an anti-cancer lifestyle, it certainly can't do you any harm, it could possibly cause your current cancer (if any cells remain in your body after surgery) to become dormant, and it could possibly stop a new cancer from developing or delay the development.  But if it happens that your cancer was primarily caused by uncontrollable genetic or environmental factors and/or if whatever caused your cancer is already within your body, then even with this diet you might still develop a recurrence (if any cancer cells remain in your body after surgery) or a new cancer.  An anti-cancer diet can't hurt and it might help but unfortunately there are just no guarantees.  So that's where luck comes in.  I wish you the best of luck that for you, an anti-cancer diet is the answer!

 Julia and all others planning to become mothers soon:

As the mother of 5 children, three biological and 2 adopted, I can answer honestly about adoption.  I understand that most women want to carry a child and breast feed it, that is where the biological part ends.  There is absolutely no difference between parenting  an adopted child and one that you created.  I loved holding my tiny babies and bottle feeding them while kissing the tops of their heads.  Babies smell great. Children are a blessing that we are intrusted with no matter how they come into our lives.  Adoption is NEVER second best.  Adoption is an honor.  I feel blessed that I have been allowed that honor, not only once, but twice.

Most important take care of your health, so that you will be strong enough to parent a child or many children no matter how that comes about. It is worth the delay.

Jane

The best thing you can do for yourself at this point is listen to SWALTERS and get a phone and written consultation from Dr. Michael Lagios. He is not some random doctor. He was in the group of doctors with Mel Silverstein that invented the VNPI that we all use. He will re-do your pathology and give you a clear picture of what you are dealing with as well as your risks, how long you can wait, etc. He won't tell you what to do, but he will tell you what options you have. You might be very surprised. He laid the cards out on the table for me and I realized I needed to do the radiation treatment I was trying to avoid. He helped me to make an informed decision. It is too confusing to try to find out critical info from people who don't exactly know your case. Don't take a chance. It will be worth the small cost...trust me! I found Dr. Lagios through SWALTERS and I will be forever grateful!

Hi Crunchy,

This is the line to which II was referring,  "I would plan to pump the diseased breast to "flush out" any remaining DCIS".  Even though you did further explain about not giving the milk to the baby, it does state you are thinking that using a breast pump would eliminate the remainder of the DCIS in the one breast. 

Cruncy, you repeatedly refer to microcalcifications in your breast.  After your first surgery you had unclean margins.  That does not mean microcalcifications, it means you still have cancer cells in your breast.  Microcalcifications is not a euphenism for cancer.  The Dr. is concerned that in addition to the cancer cells in the dirty margin, there are additional microcalcifications.  In other words, to be blunt, cancer is still there.  Microcalcifications are extra.

Anyway, forget that as you have more important issues.

If I were you, this is what I would do.

1.  Find a state program that will pay for the second lumpectomy/mastectomy and get it taken care of  ASAP.  At this point you are not even sure what you are up against.

2.  Unless the new health bill kicks in with coverage without considering pre-existing conditions (I don't know if it is included in its current reiteration), you absolutely need to find a way to get health insurance.  If you have an employer who offers health insurance, pre-existing conditions are often covered.  Some part time employers, I believe Trader Joes, will even offer coverage to employees.  You really need coverage through some employment from you or your husband. 

3.  You need the coverage for another reason.  Fertility treatments are expensive, and your baby would be high risk.  It is imperative you find insurance for your sake, and the baby you hope to have.

4.  There was talk of adoption.  Adoption can be very expensive, and I do not know what your plans are in that area.  I work in an orphanage with disadvantaged children, whom I have grown to love dearly and they love me.  Have you ever thought of foster parenting?  I know of people who have received newborns through the foster parent programs.  It is much cheaper,and much needed, you get to give and receive the same love, often for many years.  Sometimes these even develop into legal adoptions.

Anyway, that is what I would do if I were you.  I am not trying to tell you what to do, I am just telling you what my course of action would be. Totally ignore me if I am out of line.

Oh, and re the breastfeeding:  turns out in hindsight I was breastfeeding my DD with both DCIS and lymphoma which is a systemic cancer & possibly swimming around my whole body = *horrified mumma*!!  So I interrogated every onc and surgeon I saw.  They all said there was no transmission risk.  It's an unpalatable thought though, isn't it.  Not that it matters, many mothers exclusively feed their babies from one breast only, whatever the reason, and I'm sure some have managed to feed from a previously surgically-altered breast too.