Questions???

[neatfreakmom]

I posted last week regarding the questions about my DCIS diagnosis on 2/9.  I went to a plastic surgeon this week, and he and my surgeon are trying to work out a date for my surgery.  The earliest time for the two doctors and the hospital (that I prefer) to have a time to all work together is March 31.  This seems like we are waiting to long for this.  Could the DCIS spread and become invasive after waiting this long?  I am still so concerned that there is invasive cancer there that we don't yet know about.  I guess my fear stems from the fact that when I had the biopsy on 2/9, the initial pathology report given to my family was that this biopsy revealed healthy breast tissue.  Then, the next day, I got the bad news.  That is another reason I have asked the two doctors to  go to a different hospital in our area.  I no longer trust the pathology department from the first hospital.  Was this an unusual mistake on their part?  In the meantime, I sit and worry and cry.  I also hold back from asking all of my questions to my doctor because I am afraid of the answers.  What should I do, have the surgery earlier at the hospital where I don't trust pathology, or wait until the end of March when I can have the hospital of my choice, the surgeon and the plastic surgeon?  Or would I do better just to have the surgery and worry about reconstruction later?  I am only 42 and the plastic surgeon says that one day I will worry about my appearance.  Right now, I want the cancer gone!  I appreciate your advice!!

[CCF-RN,MSN-rf]

Dear neatfreakmom:  It is likely that most, if not all, of the DCIS has been removed, even though the margins are positive.  It is highly unlikely that residual DCIS will cause any problems in the immediate future.  Having said that, you mention that your family was told it was healthy tissue on the day of surgery.  Certainly, this was not a final pathology.  This was either the surgeon explaining that all the tissue appeared to be healthy breast tissue or a frozen section (one small sample) given to pathology to give a "quick opinion" as to the pathology.  Neither would be considered the final word.  A final pathology would mean taking samples from the entire tissue that was removed and analyzing all of these and this rarely happens on the day of surgery.  So, there probably is no reason to distrust the pathololgy department as pathology is never final until its final.

You have chosen aggressive surgery for your problem.  The decision to have reconstruction is a personal one.  If you are having a bilateral mastectomy, the result can be a bit startling at first, regardless of whether reconstruction is begun.  From a medical standpoint, waiting until the end of March is probably perfectly safe.  However, I am concerned for your mental health.  This is a long time to be as worried as you seem to be.  You need to consider what will give you the most peace of mind and proceed in that direction.  You should not be afraid to discuss your concerns with your doctor.  Perhaps you could discuss the pros and cons with him/her.

[surgeon]

when an initial report differs from a subsequent report, it can be due to many things; it's often the case that a preliminary report is issued for one reason or another, and that more tissue is processed later. Likewise, many places have systems for review; when a diagnosis is changed, it could be looked at as proving extra diligence. Without knowing the details of what went on, there's no way to draw any meaningful conclusion. Pathologic exam is, for the most part, pretty black and white: meaning, recognizing cancer is nearly always very easy, so I'd guess the explanation does not have to do with the quality of the pathologists. I, for one, would not choose my hospital  based on the pathology department. As to how long it is ok to wait; again, there are details of the situation that might or might not make a difference. In general, a month is not likely to be very significant, in that the timing of events from the initial cancerous changes to invasive cancer is felt, in most cases to be one of years. There's no way to know with perfection the answer in any specific situation.

[neatfreakmom]

Thanks for your reply!  This is just such a confusing time!  In your opinion, is it okay to begin reconstruction at the time of the mastectomy?  Or is it better to wait to make sure that all of the cancer has been taken care of?  I have very large breasts, and I know that the mastectomy is going to be devastating psychologically.  But, being worried about still having cancer is more so to me!  I want to do what I have to do to be well!!!  Thanks again!

[surgeon]

reconstruction at the time of initial surgery is being done quite commonly now. I think the timing depends on many factors; when there are doubts regarding any aspects of it, it makes sense to defer it. On the other hand, if a woman feels perfectly comfortable with her decision and all the issues involved, there's usually no medical reason to delay it. As you are likely aware, reconstruction is rarely a one-stage process; meaning that what is done at the time of the initial cancer surgery is likely only the first of more procedures later. Personally, I think with DCIS the decision is easier; it's when there's what appears to be advanced cancer that I've tended to think it makes sense to get all the treatments accomplished before embarking on major reconstruction. That's in part because there's already so much to deal with that adding the extra (and, in terms of immediate health, less urgent) decision-making, and the extra healing issues seems sometimes to be too much all at once. Not everyone agrees! Finally, be aware you'll get another, and "official" answer to your question from this site.

[neatfreakmom]

Thanks so much for both of your replies.  The first diagnosis was made with a quick frozen section.  I am scheduled to have my surgery on 3/11 at the same hospital.  I feel much better after your responses.  And I feel confident in my surgeon and plastic surgeon.  I hate to sound like such a basket case - I know that my situation is so much better than some.  But, I lost a dear friend nine years ago after a three year battle with leukemia.  Then, a week after she died, my grandaddy was diagnosed with liver cancer.  He lived for five months after his diagnosis, but his quality of life during that time was horrible.  I haven't been the same since then.  Thanks so much for this service!

[girlboxer]

I am a 34-year old survivor of Breast Cancer Stage II.  I was diagnosed in Feb. 2002, on my 32nd birthday.  I too understand the fear of not knowing what will happen next or if they were able to remove all the cancer.  My suggestion is to allow your oncologist to be the lead doctor; if he feels you can wait then you can wait.  However, if he feels the surgery should be performed quicker ask him to recommend surgeons.  Remember, he knows the best ones, he sees the finished breast.  Who better to trust than your oncologist?
I actually changed my surgeons based upon my oncologist recommendation.  I believe that made everything better for me.  I went with the reconstruction at the same time that I had my bi-lateral mastectomy, for me it seemed like the best way to go.
I found that I was able to deal with everything that was happening to my body and emotionally better knowing as soon as chemotherapy was over we would finish the final step for the reconstructive surgery.  Keep in mind that reconstructive surgery assuming you chose implants as I did...takes several months.  For me it was completed about 3 months after the completion of chemotherapy.  

I hope this was helpful to you!  

[neatfreakmom]

Thanks so much.  It always helps talking to someone who has been there.  I am very anxious over my surgery in 4 days -but it is in God's hands now. The decision has been made and the date is set.  Thanks again!