July 2015 Surgery Sisters

Hi, this is my first post, too. I've been lurking around the boards for a while now. My surgery date is scheduled for July 20, but I'm not meeting with the PS until July 1. In my meeting with the BS it sounded as if I'll be having the DIEP, but I'll know more what my options are when I meet the PS.

A little about me: 44 years old, married, no kids, one cat. No history in the family (not even a distant cousin), IDC left breast, 1.3 cm, ER-/PR+/HER2-, Ki67: 61%, diagnosed 5/28/15. Already a complicated medical history with fibromyalgia, peripheral neuropathy, 6 meningiomas (benign), a couple of autoimmune disorders, and a previous hysterectomy (uterus and cervix) for adenomyosis. I chose a bilateral mastectomy because, as the radiologists have put it, scanning my breasts is like scanning rocks. They're so dense and have so many questionable areas (my breasts, not the radiologists!) that I will probably be in for loads more biopsies in the future. I can't deal with the excruciating wait over and over again. And I don't want more surgeries; I'd rather get it over with in one go.

I'm trying to prepare as much as I can, but I find some of the suggestions a little confusing, like surgical bras and such, I guess bc I haven't discussed the surgery yet. I did find this great product, though, that I ordered just in case. They're call Pink Pockets and they are reusable/washable adhesive fabric pockets that you can put on the inside of your shirt to hold your drains. I don't like the idea of using safety pins with the neuropathy in my hands (and feet) as well as fibromyalgia, so I think these are a better option.

I am very lucky to have an amazing and supportive family who are going to look after me, as they have so generously in the past. I'm also starting counseling with a great breast cancer program at a local university. This web site and these boards have also helped tremendously in the last month.

I want to wish all my July Sisters the best of luck in your upcoming surgeries and I hope you will all post again with your progress!

I was not given a grade for my DCIS... I do know that it is ER and PR + ... I am not sure about the HER2 either?

I'm having a little pity party right now. I think it's mainly from chemo taste and fatigue. I only have more round left, but this week the chemo taste seems to be the worst it has been since my AC chemo.

For the others having a BMX, what are you doing to prep for surgery? I've gotten a wedge pillow, and a few pairs of button down pajamas. I'll get a mastectomy camisole too. I'm not sure what else I need to do.

Jena

Jena, You must be so relieved to only have one more round left. I hope you are feeling better!!

I haven't done much prep at all, but I am going to start tomorrow. I really have to...only 17 days left...eeek!!. I have been focusing so much on all of the paperwork end of it, that I put off getting everything else together. If I never had to deal with insurance companies ever again, I would be ecstatic! I started making my list today though. I definitely need to buy some new pajamas and a few more pillows.I am getting my hair braided before I go in for surgery so I don't have to worry about it for a few days. I have always wanted to be a UFC fighter, so at least I can have that look going for me I have a prescription for 2 camisoles, so I am going to pick them up this week. I think I am more prepared for everything at home, rather than the hospital. I was never even told how long I would be there, so I don't want to go overboard with the packing...like I did when I had my first baby.

MizMimi, I love your coconut oil idea! I am going to try that out too!

EmmyJ, I'll give that person a roundhouse kick to the head for you! Everybody has to make their own decisions, and I try my best not to judge. I don't "need" a double mastectomy, but I don't want to go through this all again if possible. I could still have a recurrence elsewhere, but it greatly reduces my chance of a new primary breast cancer. In the flip side, I have a friend who has had brain cancer, ovarian cancer and breast cancer three times. She still.has her breasts- she has done lumpectomies. I don't understand her decision, but it is her decision, not mine.

I am so relieved to have less than three days until my last chemo!

I'm going to start using coconut oil too! Does it feel really greasy? I cook and bake with it. I have no hair, so o don't have to worry about how to shampoo after surgery!

Ispy... If I stay in this group, my surgery date is July 27th

People are assholes. I am sure I have said some dumb things to people before but damn, have some compassion!

I think you ladies are very brave and I will be praying for you 😘

I am having a hard time telling some people because I always feel like I have to comfort them. It's so draining some days and I feel bad about it

Thank you all for your kind words. This whole "people understand where you're coming from" thing is very new to me haha. It really means a lot.

Yeg9525....Don't leave! I think Ispy hit the nail on the head with the fact that tone is really hard to decipher through text.....You can ask my husband because we bicker about it all the time :-) I hope you stick around though!!!

Jena...exactly! We have all made the decision to do what we feel is best. I try to tell myself that I owe no one an explanation, but I still feel the need to defend myself. it gets so tiring though. As for the coconut oil.... I have used it on my hands before, and it was fairly greasy, but I have whipped it with a hand mixer and added essential oils, and it seemed to lessen it...and it smelled great, too.

I tried to buy some more stuff in order to prepare, but I couldn't find any button down pajamas. I will have to search again tomorrow. I HATE shopping for myself. I am 5'10" and "built like a linebacker" (as my PS pretty much told me), so I have a tough time finding clothes that fit correctly. I think I might just live in a robe for a while.

Thank you, Ispy! I am definitely going to check that out. Good thing you got that MRI! That's crazy. I hope everything goes well with your follow up. Keep us posted. Also, congratulations!! I have my BA in Tv, Radio, and Film from Newhouse at Syracuse University....where, I focused in writing, as well! I am sure it has been a whirlwind with everything going on, but I hope you get the time to really soak up the fact that you have accomplished something so wonderful. You deserve it!

Ladies.. I just posted this in the DCIS forum and I'm going to post it here for your advice, too.. thanks in advance. I am pretty upset at my BS at the moment!!

My BS just called me to tell me that he just heard that my BRCA was negative and asked if it was true that I had scheduled a surgery for DBL MX (apparently he was out of the country when the PS scheduled it with his office) instead of the original LX/radiation tx we orig. discussed.

After I confirmed that yes, I indeed was choosing this surgery he said "You understand you only have DCIS?" I said yes. He said "And you want to remove this breast and the healthy breast, too?" I said yes. He says "That is totally CRAZY! You only have DCIS and it's not cancer yet!"

I then asked him if the cells in my milk duct are malignant, Grade 3 comedo necrosis and he said yes. And I asked him if the cells that are malignant.. are they cancerous cells? "Yes". Well, then it's CANCER.. it just hasn't spread yet, right, I asked. He said "TRUE."

I said I want to avoid radiation. He asked me if I understood what a major surgery this is going to be and I said that I did. He finally says "Well you're the patient. If you want to avoid radiation, that is your choice. I can't make that choice for you."

I felt dismissed! I feel like he is not on board with my decision and to call it crazy??? How unprofessional. Plus now he says he has to change my surgery date, too..!!!

I know I do NOT want radiation. But now I'm wondering if I should consider saving my healthy breast?? I don't want to second guess my decision to remove both breasts and hopefully not have this come up again in my future!!

Any thoughts ladies??

FYI-- this BS is one of the top docs at our prestigious university and has been involved in some of the major studies on breast cancer. He's a professor, too.

Thank you for your reply! I'm still reeling from this total upset to my well laid out plan. I would be very interested to hear what your second opinion BS tells you. I may have to consider switching doctors, but he is so good at what he does, yet how can I let him operate on me when he clearly is not in agreement with my choice?

^{Maybe I will have to find a female BS, too. This university clinic selected the BS for me and I guess he is one of the top doctors there. They all work together, so switching to another doctor may be awkward...I'm not sure I should care, though.}

^{Thanks again for your insight.}

MizMimi, it's amazing how much somebody's tone or selection of words can change how it affects the other person. "It's just DCIS" minimizes the intense feelings that come with knowing there is something growing inside your body that shouldn't be there. "That's crazy" again makes it seem as though your feelings and decisions are invalid. A simple change of wording would have been much more helpful and professional. At the end of the day, it is your decision. Personally, I haven't even been diagnosed with anything, and I am getting a PBMX. I don't want that little voice in the back of my head that questions every new lump/pain in my breasts. I don't want that anxiety between scans every 6 months. I met with my mother's BS (I couldn't believe he was even still around... he hadn't seen me since I was 5 or 6!) and after a very long discussion of the pros and cons of PBMX, he said, "Well, we could do more extensive genetic testing, but would that put your mind at ease? You need to do what you feel is necessary in order to be able to LIVE your life."

A second opinion may just be what you need. If a doctor can maintain a bit of compassion along with their opinion on what procedures would be necessary, it may change your mind....or it could solidify your original choice. It is whatever you feel in your heart will help you live your life as worry free as possible.