second opinion different than the first

mimi32

I am fairly new here. Though I have read alot searching for information I haven't really gotten involved. I guess I was afraid to feel I needed to be apart of the community. 

In June 2013 I found a lump in my right breast. I had a focal mammogram that not only confirmed the lump that I had found but also discovered I have a second lump and microcalcifications. A week later I had 3 biopsies in one day. The 2 lumps are fibrocystic tissue. The calcification showed ADH. I had an excisional biopsy on July 25th. The path report stated it was more ADH but also FEA. 

When I went for my post op appointment to discuss these results my BS suggested I take Tamoxifen and referred me to an oncologist. During our decision she made an unsettling statement that I was unable to forget. She stated "They were on the fence but not ready to call it DCIS" 

I walked out of that appointment and immediately told my husband we needed a second opinion and he agreed. 

Though my original appointments were through a well respected hospital in town I decided I needed to go somewhere that specializes in cancer. The opinion of this hospital is that it is indeed DCIS. I was told that when they have a different opinion they have several pathologist confirm the difference of opinion. I got the phone call Friday (9/20) and I go back to my new BS to discuss the details (type, grade...)I also have an appointment with PS in October as I have decided to have a BMX with reconstruction. 

BC does not run in my family however cancer runs fiercely through both sides of my family at young ages. I know my husbands family is not my blood but he lost his sister in her 30's to BC and his mother has battled BC several times in 10 years. 

I guess my long winded question is... Have any of you had a second opinion come back differently. If so did you base your treatment plan on the second opinion? Has the emotional background of your husbands loss to BC swayed your treatment decision to opt for a BMX to take away his fears. 

ballet12

Hi Mimi, I have never had a second opinion which differed from the first (luckily).  I had an ADH diagnosis 17 years ago, and had the slides re-read at Memorial Sloan Kettering and they agreed. More recently, my stereotactic biopsy showed ADH and the excisional biopsy showed DCIS.  I had them both re-read at MSKCC and they agreed that the stereo. core biopsy was ADH (severe) and the excisional was DCIS (high grade).  At the teaching hospital where I had the stereotactic biopsy and then the initial excisional biopsy, no fewer than six radiologists read the ADH slides to be sure that they concurred, and then a number of radiologists read the DCIS slides (especially since the results were discordant).  Given that the DCIS was high grade, multi-focal and with comedonecrosis, there wasn't really any problem making that diagnosis.  I was certainly not expecting it, figuring it would be a fine discrimination between ADH and a small amount of low grade DCIS. Your situation would be much harder to deal with, emotionally, in some ways.

I am struck by the question you posed regarding the emotional background of a husband's loss to BC swaying one's decisions (to take away the spouse's fears).  This is just my opinion, but I think that the decision to do BMX has to be made by the person having the BMX, with the hope that the spouse will support the decision, whatever it is.  This is such an emotional and personal surgery. You haven't yet had a discussion with your new surgeon, so maybe that will help with the process.  Best of luck to you both in this challenging situation.

mimi32

Maybe I need to reiterate that question a little better. My husband is not in anyway asking me to have a BMX. He is a hundred percent supportive of whatever I choose. However in dealing with my own emotions and fears I find myself thinking about his fears in a different perspective (If that's the right word) because of the loss he's already suffered because of BC. Does that explain what I meant by my question? 

I know that the final decision is mine and I will make the best decision for me but I also consider what my decision means for not only myself but also my husband and my family. That's just the type of person I am. 

Beesie

mimi, your second post does explain your question more clearly, but I will answer the same way that ballet12 did.  A BMX is major surgery that will impact you emotionally (at least for a period of time) and physically (for the rest of your life). It is already a very complicated, highly personal decision, without having to factor in the emotions of other people. 

Some women have a relatively easy time of it physically and emotionally.  But other women struggle with it, sometimes for years.  And for some women, the physical effects linger for years. Hopefully you will be one of the lucky ones, but if you aren't, if you are one of the unlucky ones who does have longer-term physical effects, or if you find that the loss of sexual sensation has a big impact on your life, you might end up resenting that you made the decision in part because of your husband.  Even if he didn't ask you to do it, if you end up with problems, either physical or emotional, it could affect your relationship.  Just the surgery alone and the physical changes can affect your relationship, but when you add that element into it....

The other consideration, from a physical standpoint, is that if your diagnosis is pure DCIS and if a lumpectomy is a viable option for you, then with a lumpectomy, you will not need to have your nodes checked.  Nodes only need to be checked if you have invasive cancer; with pure DCIS it's not required.  But a sentinel node biopsy (SNB) is very difficult to do after a MX (it's not something most surgeons would ever even think of doing or attempting after a MX), so if you choose to have a MX, then usually a SNB is recommended, just in case some invasive cancer is found in the final pathology.  The problem is that once nodes are removed, the patient is at risk of lymphedema.  This is a condition that can develop at any time in your life after the node removal, and once you have lymphedema, you have it for the rest of your life.  So most women who have nodes removed take precautions to reduce the risk of lymphedema and if they develop lymphedema, that drives more precautions and changes in every day activities.  All that to say that if you have a BMX in part because of your husband, and if you develop lymphedema, that could be another situation that leads to resentment or a change in the relationship down the road. 

My advice is to make the decision that is right for you, based on your body and how you feel about the risks of the disease and the risks & side effects of the treatments.  If you are choosing to have a BMX, make sure you understand what you are getting yourself into and make sure you are prepared for all eventualities.  A BMX might very well be the right decision for you, but the last thing you need are surprises after the fact.  I've been hanging around here for some time, and the things that I've seen women surprised about include: their emotional reaction after the surgery (sometimes immediately, sometimes a year or more later), the need for revision surgery as part of the reconstruction process (quite common) and how long the reconstruction process can drag on, the lack of feeling and numbness in the reconstructed breasts and across the chest (everyone has that to some degree or another), the precautions you may want to take to reduce the risk of lymphedema, the fact that you still have a risk to develop breast cancer even after a BMX (a low risk but it's there nonetheless and you need to be diligent and do breast self exams), etc., etc., etc.. 

ballet12

Hi Mimi, I am now editing this post.  I wrote it while Beesie was apparently responding to you.  She has a remarkable ability to cover all the points one might consider. The only thing I would add would be that it would be really good to bring your husband to the appointment with the breast surgeon (I'm sure you plan to do that).  Even if you ultimately decide on the bmx, at least you will hear (again, I'm sure) that a dx of DCIS (regardless of treatment decision) is just not the same as a dx of invasive cancer.  Hopefully the surgeon will lay out all of the options and give you all the risks and benefits of each option (including umx, bmx, lumpectomy).  You may even be insurance-eligible for BRCA testing, which could partially inform you of whether there is a genetic component/explanation for your findings. Clearly bmx reduces the risks the most, no question, and you wouldn't be subjected to lifelong mammos/sonos and potentially some if not many biopsies and lots of anxiety.  As Beesie stated, mastectomy doesn't reduce the risk to 0, but it does reduce it to 1 or 2 percent recurrence risk. My heart goes out to you.  I know this must be terriying for you and especially for your husband.  Best of luck with this process. Take your time to garner all the facts as well as emotional factors so that you can be at peace with your decision.