How.do I make all these.decisions??

NvrGvsUp

Well. I'm definitely in the driver's seat of this crazy train, I just want to make sure I'm visiting ALL the stops, so to speak, before surgery day. I'm hoping some members will be kind enough to share their views, experiences and advice that helped them arrive at their decisions. So if you're reading this PLEASE keep reading, even though it's self admittedly long winded. (In my defense this is some BIG stuff!! Some of the biggest decisions I've ever had to make and I would reeeeally appreciate your thoughts.)

Uhhhh, let's see. I almost don't know where to start, it's all so much! Found a lump in my left breast on Halloween. Had mamm the next week. Sent to have ultrasound immediately following mamm. Sent to BS after completing the ultra sound, was rated 5 on BIRAD. 2 days later,.3 core biopsies on tumor and 3 core biopsies of suspicious lymph node. Following week: diagnosis was Stage 1 breast cancer, 1-2.cm. Lymph node was fine. Genetic testing showed positive for BRCA 2 mutation. BS recommends BMX and hysterectomy. Met with PS: not.a.candidate for preferred DIEP flap reconstruction. Waited until after xmas and now meeting with PS to.discuss silicon implant option,.sizes and samples on Monday. Scheduled to meet onco OBGYN on Thurs. to discuss hysterectomy or ovary and fallopian tube removal. BS wants to schedule.surgery asap!

I guess I, like every other diagnosed person, want to make all the right decisions. As is so commonly posted: yes I agree: everyone has their own journey and everyone has to do what's best for them and no two situations are alike BUT!! How can I possibly know what's best for me when I've only had this DX for 7 or 8 short weeks? How can I make these decisions today that will affect my health and well being the rest of my life? I'm only now getting used to the idea that I even have cancer, let alone use the word.

It may help to note that my son is on the autism spectrum and also suffers from anxiety. His psychiatrist recommended that I don't tell my son or his younger brother about my cancer as mentally, he's too fragile to be expected to manage news like this about his Mom. So, my husband and I keep cancer discussions tucked away and very private. We have only told close family and friends with the caveat that it must be kept private and from our boys at all costs. A few days preceding my surgery we will tell the boys that I have an infection and my Dr is going to help me out with it and keep it very simple and matter of fact, so he doesn't worry and stress. Thankfully, I'm only expected to be in the hospital 1 night and I already have sleepover plans for the boys on that evening, maybe more if needed. Since I won't need chemo or radiation (just Tamoxifen for the next 5 yrs) my family will be spared the additional hardship that those therapies bring. I only hope our plan stays intact and the boys don't find out but that's a whole other animal.

So.... some decisions are clear no brainers for me (of course I've opted for the BMX-cancer can't come back to a breast I don't have) but other decisions have me wrestling pros and cons endlessly till I'm mentally exhausted and mind-numb. There are soooo many sites, soooo many findings, sooo much of everything that it's all too easy to get overwhelmed, quickly. These are some serious, serious decisions to be made and I just can't wrap my head around what's best. I mean, how can I possibly know if I am the type who could go on to live a perfectly happy, flat chested life without breast reconstruction, or if I'd wake up drowning in regret learning that having breasts matters more than I previously thought?? Or what if I hate the expanders? What if they feel like rocks and I can never sleep comfortably again? I haven't experienced any of these options, so how can I know what choice is best for me??? How do I know whether I should have a total hysterectomy (I'm BRCA 2+) or just my ovaries and tubes removed? There's substantial evidence for both sides of the arguement. Should I have my BMX AND reconstruction AND Hysterectomy all taken care if in the same surgery?? How can I know what to do? I have an amazing BS, who I trust and a PS that is top in his field and a highly recommended Onco OBGYN I'm scheduled to meet this week, but at the end of the day, how can I possibly expect them to really know what's best for me when we've only met a handful of times in an office consult that lasts less than a half hour?? I'm a realist and I just can't justify that any of them can even put my name and face together without checking my chart before entering the room to see me. This whole thing is easily conceivable but maddening nonetheless!

That said, I have an amazing group of dear friends who are already rallying behind me with love and support. A blessing of a husband who will undoubtedly love me whichever road I choose and an amazing brother (who I pray doesn't carry the BRCA 2 mutated gene) as well, but to date... none of them have walked this road and contemplated these decisions.

This is why I've come here, with my most sincere hopes to draw from whatever your wiling to share with me. I can't be the only one having these thoughts and feeling this way...right? Tell me you did or do too. Please. What do we do? How do we decide?

If my Mom were still alive, I would pose these exact thoughts to her. The thoughts and questions and concerns that seem to bring me to my knees when I'm weakened with endless questions and doubt.I can't know everything my Mom would tell me, but I know she would lovingly remind me...."sh*t can always be worse"

CindyNY

Welcome to the group none of us wants to be a member of. I've only had a lumpectomy, so I'm not a lot of help there, no reconstruction. I don't know enough about reconstruction, but can you go ahead with mastectomy and revisit reconstruction? You've got so much going on at once.

Know you're not alone on the journey of not knowing what is right. I'm hoping someone with similarities to you sees your post and responds. Sending hugs to you.

Dm39

Hello Nvrgvsup. I am sorry to hear of your diagnosis. I too am struggling with this decision. I am scheduled to have surgery 1/24/18. My mother is passed as well and I understand wanting to ask her advice. Ask anyways, she will speak through your heart. My son is 16 and is also unstable. I told him, however, I did down play it too. Seems to be ok for now but I will need chemo so eventually he will be more aware. I have multi focal invasive ductal carcinoma er positive pr positive her2 negative. I have 3 tumors 5mm-2cm. My oncologist feels a bilateral mx is best because i have dense tissue in both breasts and many cysts as well. My S.O. feels a lumpectomy is still an option because i have enough tissue for a good cosmetic outcome. 6 1/2 weeks would follow lumpectomy. Chemo either way. I am tired and have also exhausted my mind trying to make a decision. What I am learning is that no one can truly decide for us. We need to weigh out our options and find the right solution for ourselves. I have talked to women who did not have any options for treatment. So it is a good thing to have a choice. If you are er +/pr+ then your tumors like estrogen and your ovaries are what produce that. A prophylactic hysterectomy is usually recommended. I am not sure why they are not recommending chemo or radiation for you. Breast cancer can spread to other parts of the body as well. Carrying the gene does not always mean you will get cancer, and not carrying it does not mean you will. But if you already have cancer and have the gene, it raises your risk for recurrence. Also, recurrence means it comes back in the same place. This is not the same as getting a secondary cancer. I was unaware of that at first. My suggestion to you is to make as many appts with your oncologist as you need to make your decision. Keep in mind once you remove your breasts, they are gone. Plastic surgery now a days can do some fabulous things too. Being that you have children on the spectrum, I would do whatever is necessary for your survival. After your oncotype dx the pathology reports will reveal more. We cannot predict the future, but only do the best with the information at hand. I hope this helps. Sending hugs and prayers to help ease your mind. You will make the right decision. Good luck.