Would like to hear from DCIS women

[jumpinjiminy]

I have recently been diagnosed with DCIS, grade 2, and another biopsy site in the same breast with atypical hyperplasia. The recommendations were lumpectomy with radiation and tamoxifen or bilateral mastectomy with sentinel node biopsy. I won't be able to take the tamoxifen, due to hormone sensitivities and stroke/blood clot risks. The cancer would be difficult to follow because of severe fibrocystic disease which makes one whole breast and half of the other light up on MRIs. Which makes mastectomy look like the preferred option, except I also have multiple autoimmune diseases, putting me at risk for reacting badly to silicone implants.

Is there anyone out there who's faced this same decision? What did you choose and how did things turn out for you?

[mhv]

I am wondering how you are doing, and where things are with you.

[japdip]

To answer the question you addressed MHV .... after reading her description of the post-op Pathology results I would say the additional nodes were taken for a couple of reasons. The sentinel node possibly showed some indication of cancer invasion, thus more nodes needed to be tested. Secondly she did state that there were a total of 6 areas showing cancer so ..... 6 nodes were removed. As a rule IF the sentinel node is positive OR isn't tested at all then any number of nodes may be removed for testing. I would also like to say that no test (mammo, US, MRI) can diagnose with certainty the presence of cancer in the breast tissue. Changes seen on these films can indicate the possibility that a malignant condition may exist but biopsy is the ONLY diagnostic tool that can determine this to be a fact. Even with Mastectomy there can certainly be some form of post-operative treatment recommended. Hope this has helped in some way to answer your previous questions.  Take care .....

[mhv]

I honestly do not know how they decide how many to take??  Beats me!  I guess maybe safe then sorry?  
I know, the not knowing what else is going on in there is what made me de de on the double mastectomy.  It is all so surreal!  I still have trouble believing this all really happened.  But, my recoveries were great, so I cannot complain.

[jumpinjiminy]

Thank you. This is one thing I'm concerned about, given that another site showed precancerous changes, are there others with cancerous changes and how many? The only way to know that for sure is the mastectomy and node biopsy. What made them decide to take so many nodes?

[mhv]

I was originally diagnosed with DCIS grade 3.  It was Nov. '14.  I opted for the double mastectomy.  I didn't want to do radiation, and I have a very high family history of BC.  I also did not want to keep looking over my shoulder wandering if/when it would return.  
My double mastectomy was  Dec 15, 2014.  They took my sentinel node and 5 others.  I had immediate reconstruction (meaning they put in expanders during surgery.  
Pathology report came back with 6 areas of invasive cancer, that were not detected on the mammogram, u/s or MRI.  I was moved to stage 1A grade 3.

The one thing I have learned is there is no right or wrong answer.  You have
to make the decision that is right for you.  That gives you peace.  

I just had my permanent implants placed on March 9th.  
I suggest you find a plastic surgeon that specializes in breast reconstruction.  I believe it makes a world of difference.  Educate yourself on your choices (yes you have choices) and then you can ake the best decision for you.

Good luck

[jumpinjiminy]

Thank you for the encouragement and information. I've taken a look at what's out there and it helps to know so many products exist. Cute bathing suits, too.

[japdip]

Just wanted to wade in here with one comment. It's very early but take a look at the "Amoena" website and look at the swimsuits available along with swim forms that fit in a pocket in the suit .... I have a great suit and you can't tell which side is my natural breast and which is the mastectomy site. One other thing .... your surgery shouldn't be a "long" surgery unless you choose to have reconstruction along with the mastectomy.  Wishing you the best and take your time making your choices.    

[zouzi]

Hi again,
Please try not to worry…right now everything must be very confusing to you,but when you’ll meet with all your treating Doctors you will be reassured and understand everything you need to know.If you decide to have breast reconstruction later on,I don’t see why you couldn’t wear a swimsuit this summer and look great! .Ask your Surgeon where you can purchase Mastectomy apparels.(You could also search the Internet) Many stores offer a wide selection of mastectomy bras, breast forms, mastectomy swimsuits and mastectomy prosthetics etc...
I am sure you are going to be just fine once all this is over…Keep in mind that DCIS is the most curable type of cancer..
I wish you well and I hope that everything will go smoothly for you  :)

[jumpinjiminy]

I still have to schedule with all of the consults - plastic surgeon, geneticist and neurologist. I'm going to toss in a pulmonologist, too, to be on the safe side as I tend to hypoventilate and accumulate CO2 in the blood. This is a concern for the long surgery. I don't know how I'd get through the summer with nothing to put in my swim suit. :-( How would you even find a suit that fits, or do you just accept that you'll have big water bubbles in the top for a season?

[zouzi]

Hi,
Treatments on how to proceed with DCIS diagnosis are related to many factors..Each individual situation is different and you should rely only on  your treating doctors who will decide which treatment is best for you. Lumpectomy, followed by radiation therapy, is the most common treatment for DCIS, then followed by Hormonal therapy to block or lower the amount of estrogen in the body ”If” the DCIS tests positive for hormone receptors. Since cancer would be difficult to follow in your case and you cannot take hormone therapy for other health reasons, then mastectomy would be the preferred option to lessen considerably the risk of recurrence in the same breast or develop a new cancer in the opposite one.
I know of many women who have waited a year before having breast reconstruction and others who did it immediately.Most had less problems when they waited,,but I am sure you’ll get the best advice and information from your Breast Surgeon/Oncologist and  Plastic Surgeon who have all your medical records and have the best strategy on how to proceed  in your particular situation.
All the best to you and good luck .