Frustrated!

We are having parallel lives.  I felt I'd made peace with everything--the DCIS, the double mast in a week and a half--and yesterday started reading things on the internet, flipped out, and made an appt. for a second opinion at another hospital TWO DAYS BEFORE MY SURGERY.  I have friends flying in the next day to be here for my surgery.  Okay--so you know that I've lost my mind, I'd just canceled the appts for second opinions two times the week before.  But I just feel like a kite with no string attached, and the weekends are the worst, because there are no professionals to call--not that I can think who to call anyway during the week. 

Now, if I call and cacel--well, I don't think I'll have a FOURTH chance, but I don't want a second opinion anymore because I KNOW it'll be conflicting info, and what good will that do.  Once once person tells you you need a double mastectomy to save your life, how are you ever going to say okay to someone saying, oh no a lumpectomy will suffice...

These are long days....

psstl,

I bumped the post from Beesie - I'm sure that will help you answer some of your questions.  Here's a link in case you can't find the thread

http://community.breastcancer.org/forum/68/topic/727963?page=3#post_1750740

Hugs,

Trish

I certainly understand where you are coming from.  Before I settled on my treatment plan, I had a co-worker who actually had DCIS tell me the same thing when I had my surgeon telling me a mastectomy was an option because she felt my DCIS was too close to the nipple for cosmetically good lumpectomy results.  I can still hear the co-worker's voice and tell you where I was--in the office lunch room--when she said "but its not even really cancer, how they tell you might need a mastectomy?"  Those words just cut to the quick, making me second guessing everything I thought I had decided.  On the bright side, talking to me about it seemed to have scared her so much that she stopped asking me anything about my breast cancer. . . .

As my husband wisely said, maybe she deals with having breast cancer by saying its not cancer and if you have what she had and yours is cancer, then her delusion is shattered.

That said, it sucks but you do have cancer and you can't ignore but if you are not feeling comfortable with your decisions and treatment plan, IMHO, you shouldn't go ahead with surgery.  So much of recovery really seems to be linked to attitude and how we feel---if you don't feel good, step back, take a deep breathe and think before you leap.  The one "convenient" thing about DCIS is that you can take the time to think about the options.

I did get a second opinion and I felt much more comfortable with surgeon #2 than surgeon #1. To me, finding the right surgeon and team---people you feel confident in--is really key.  Surgeon #1 had more experience than surgeon #2 and was more willing to go back in for reexcission so I have ended up with a lumpectomy.  My lefty does look smaller than my righty but with clothing on, you can't really notice it.  With clothing off, well, my husband is just happy I'm not going anywhere.   My oncologist said that grade 3 DCIS will become traditional invasive cancer, its just a question of time.  So while there may be questions about what grade 1 DCIS and grade 2 DCIS will do, grade 3 DCIS [what you and I have] is a different story.  This means as much as I didn't want to, I'm doing rads [got fitted out and start on the 23 of the month].  And I will give the tamoxifen a try---I have already had a hysterectomy so some of the tamoxifen risks are irrelevant to me.

Are the people you are seeing at a major cancer center?  When I wasn't sure what I was doing [and thought my cancer might be more complicated] I had an appointment for a second opinion set up at a major cancer center.

hang in there!!!!!

Psstl did your mother's recurrence happen within the 5 years after diagnosis so did she not have the Tamoxifen due to a lower grade like 1 or 2?  So scary and even frightening at least it sounds like you have a wonderful support team with you even in your daughter doesn't quite get it....

psstl,

I second dsj's suggestion that you talk to a medical oncologist about the Tamoxifen decision.

And I understand your comments about thinking that your cancer might be genetic, even though your surgeon doesn't think so.  My mother had BC, although she was 80 when diagnosed.  One of her sisters had BC pre-menopausally and there is prostate cancer (which is also related to the BRCA gene) on my father's side of the family.  So I had BRCA testing, which came back negative.  Still, like you I've always felt that my cancer was genetic.  The fact is that although it's stated that only 10% - 15% of BC is genetic, this refers only to known genetic mutations.  My genetic counsellor explained that in all likelihood there are more genetic mutations that are yet to be discovered, and there are other known genetic links separate from the BRCA genes.  For example, high breast density has recently been identified as a significant risk factor for BC.  In most women, breast density reduces as they age, particularly as they enter menopause.  My mother is in her 80s and still has very dense breasts.  I'm post-menopausal and my breasts have been identified as being "extremely dense".  So, did I inherit my dense breasts from my mother?  And for both of us, did it lead to our breast cancer diagnoses?  There's no way to know for sure, but I'm betting that this is at least one of the causal factors of my BC.  So for you, although it appears quite unlikely that the BRCA genetic mutation is in your family, this doesn't mean that you didn't inherit something from your mother that has led to your BC diagnosis. I think a lot of doctors are too narrow-minded when they talk about genetic causes of cancer and restrict the discussion to only the known genetic mutations.  There is so much more to it than that.     

As for your lumpectomy vs. mastectomy decision, if you know in your heart - and your gut - that you are not ready to have a mastectomy, then don't have one.  If you have a lumpectomy, you can always have a mastectomy later.   But after a mastectomy, there is no going back.  So it's not a decision that anyone should make unless they have no choice (my case) or they are absolutely certain that this is what they want to do. 

JennSmith58 said best what I was thinking:  if my doctor thought I didn't have cancer I wouldn't feel comfortable with him/her on my team.

I think seeing an oncologist should be a priority.  One conclusion I drew when I was going through the decision making process was that cancer treatment is, pardon me, ass backwards.  Surgeons know how to cut things, oncologists know cancer.   Yet too often we are all told we need to see the surgeon first and to see an oncologist AFTER we have had our surgery.  My first surgeon was saying mastectomy or partial mastectomy as preferred treatment.  That sounded so extreme to me so I went off to get more opinions like meeting an oncologist.  I found my meetings with the oncologist and the plastic surgeon helped me tremendously in figuring out what to do next.  In my case, post surgery and pathology and the like, my oncologist is now recommending that I take tamoxifen and see how I do on it.  She finds most of her patients do pretty well but --and this was really helpful to me--if I don't do well and can't take it, she thinks I should be okay anyway.

Beesie, interesting bit about dense breasts.  I have them too.

I, too had dense breasts.  Hmmm.

Funny, I've thought the whole thing was ass-backwards as well. I never understood how they could be meeting "as a team" on my case, without all having seen me. Finally, after I've already seen my radiation oncologist and I've had my surgery, I will meet my oncologist for the first time. Bizarre, really.

And I have already decided not to take Tamoxifen, so I wonder what we'll even discuss at this point. I am sure I'll have to sign my life away because I am opting out of Tamox.