The Club No One Wants to Join

kikind

I was just diagnosed on Friday after waiting 9 long, excruciating days for my biopsy results. I knew there was a pretty high probability that the tumor was malignant but was still hoping it was benign. It's kind of a shock to see it in black and white on the pathology report and in my electronic medical files. I had a consultation appointment with the breast surgeon scheduled for Wednesday but got notification this morning by e-mail that it had been cancelled. Huh? Called and left a message for her nurse and haven't heard back yet. I never thought I was an impatient person but I'm starting to realize that it's something I definitely need to work on, lol.

kikind

JavaJana, thank you for your sweet reply. I think I will feel alot better when we get the surgery scheduled.

My doctor called last night. I guess our hospital doesn't have a radiologist right now so they can't do the lumpectomy without one? So, he's working on finding a breast surgeon in another town. The joys of having breast cancer in a small town

dysonsphere

I live in Houston so plenty of cancer centers but I still have to wait until December 31st to get into my cancer center of choice. I assume if it was critical, I would get seen sooner so I'm trying to study up on surgery options and just being positive that no matter what kind of twists and turns this journey has, I can make it all positive in the end and end up on top. Good luck!

kikind

Dysonsphere, you have such a great attitude about this! I have 2 friends who are going through breast cancer right now and waiting a few weeks between appointments seems to be the norm. So that was reassuring, but the wait is still hard. I hope you have a wonderful Christmas!

Anonymous

Hi there, sorry you have to join us but we are a good family to be part of, if you have to.

First, let me be the first to say you are going to be okay. The waiting and not knowing everything is crazy-making, but come here and vent when you need to.

Second, I learned that I had to be pretty proactive during my active treatment. It's okay to call more than once, ask for clear answers and write them down, and even to drive to doctor's offices to try to get answers, reports, etc. You are your own best health advocate--meaning no one cares more about your health than you, ESPECIALLY now-and "assertive" doesn't mean bitchy or pushy, it just means you are caring for yourself to get through this and move forward with your life.

Big hug

Claire in AZ

kikind

Claireinaz, thank you! Everyone in these forums is so incredibly supportive and helpful. The "not knowing" is the hardest part, but it is comforting to talk to someone who has been through it.

It is hard for me to be assertive, but you're right. I live in a small town in ND and things move at a different pace here than I'm used to. I found a female surgeon about 45 miles away that specializes in breast cancer. I told my doctor's nurse that I would like to see her and she said, "Ok, I'll run it by him tomorrow and start the authorization process." So the ball is rolling, but rolling slowly

msphil

yes sweetie the wait is hard I also went thru that period but once treatment plan in works less anxiety from not knowing hang in there sweetie. msphil idc stage2 0/3nodes 3mo chemo before and after Lmast got married was planning our weddings at time then 7wks rads then 5yrs on Tamoxifen. For Inspiration I am a 25yr Survivor this pass YR Praise God. Hope and Positive thinking and fiance and family.

kikind

Msphil, that is truly an inspiration! Thank you so much for reaching out.

I haven't posted an update in a few weeks. The surgeon we found about 45 miles away wasn't taking new patients for a few months. So we met with a different breast surgeon the week before Christmas. I really liked her and felt immediately comfortable with her. She wanted me to meet with their oncologist, radiation oncologist, plastic surgeon, genetic counselor and get a breast MRI before we scheduled surgery. All of those appointments are scheduled for this Wednesday and Thursday. These doctors are all located about 4 hours from our house, but alot of people from my area go there when they need surgery or have cancer. I already sent my blood work to the genetics lab and hoping to have the results this week. Based on the genetics testing and MRI results, we can then make a decision about surgery: lumpectomy or mastectomy. It will be a relief to finally have a plan and a date.

Anonymous

I agree, knowing when you can start treatment allows us to wrap our minds around the idea that we'll be done with it around x date, too. It's a relief.

I always said that in order to get the best care, I'd travel. I live in a smaller AZ city surrounded by rural communities and our regional medical center, although it does have a cancer center, isn't the most highly rated. I was willing to drive 3 hours one way to Metro Phoenix for the best cancer tx available, and I still ended up driving an hour each way to a center and oncologist that came highly rated instead for chemo, check ups, radiation.

My radiation txs lasted 15 min--5 days a week for 6 weeks--so I drove 2 hours for 15 min of tx! But it was worth it because it was the best. If we look at tx as temporary-we can do anything for five months or so--it makes it seem more doable.

Sometimes we would have to leave the night before because I was getting infused during the winter months and we had to miss a snowstorm in No. AZ to get to tx. We stayed in cheap motels, and just sucked it up.

Keep us posted!

Claire in AZ

kikind

Claireinaz, uffda! You had quite a commute for treatment! But you're right, it is worth it to get the best care. We have a small cancer center in my town that just opened a few years ago. The oncology docs travel here 2 days a week from bigger cities 5 and 2 hours away. My primary doc said his wife was treated there and he highly recommends it. I'm hoping that I can receive treatment (chemo and/or radiation) here in town. But, if I have to travel, then we will figure it out.

When my dad was dying from lung cancer 10 years ago in California, he had mets to the brain that caused alot of miserable symptoms. His docs prescribed radiation every day for 3 weeks to shrink the tumors in his brain and make him more comfortable. I drove him to radiation every day. If you are familiar with Southern California, he was living in the valley, I was living in the Inland Empire and radiation was smack dab in the middle of Hollywood. So lot of hours in the car, but we made the most of it. We talked about anything and everything. He told me stories about his time in the service and growing up. We sang at the top of our lungs to the radio. And sometimes, he just napped. I am so grateful for that time we had together.

Anonymous

kikind,

Exactly-listen to podcasts, audible books, anything. I was rather lucky that I got tx in Sedona AZ and could drive through Oak Creek Canyon for each treatment, and when the weather was good my husband, dog and I did a hike afterward. It made me feel empowered, fierce, and normal. (Except when I was getting AC--I had to get home within 2 hours because I began to feel pretty crummy after that).

C

striveforhealth

kikind, It sounds like you found yourself great providers. It's important to know you have a great team. I'm wondering how you are doing since you last posted here and hope that your process is getting underway. Keep us posted.

I'm having my surgery on Feb 26. I'm feeling like things are falling into place finally so now I'm beginning to prepare myself for the surgery and recovery. I'm also getting my house in order and looking for ways to make things easier for myself especially during the 1st week after surgery when I probably won't be feeling so great. If I could just figure out how to stay laying on my back while I'm sleeping. I've been experimenting and I keep turning on my side! lol I even lined up a bunch of pillows along the sides of me thinking that they would keep me from turning but they ended up on the floor or all over the bed! There has to be a better way.

Every blessing.

kikind

Striveforhealth, I just realized I hadn't posted an update. My genetic testing came back negative for BRCA1 & BRCA2. I had a lumpectomy and sentinel node biopsy on 1/13. All 5 lymph nodes came back clear and the surgeon got clear margins on the tumor. YAY! So now, I see the radiation oncologist this Monday to schedule radiation. Then we see the oncologist this Wednesday to finally determine if I need chemo and hormonal therapy. I decided to continue treatment here in town at our local cancer center so I can drive myself to and from radiation every day. Everyone we've talked to has said good things about the docs here. Plus, it's really important for me to get back to "normal" as much as I can.

There are 2 things I would highly recommend for your recovery after surgery. The first is a recliner. I slept in ours for the first week after surgery. It was so much easier to sleep and get up and down on my own. I've talked to a few people that rented one for a month or so. Or you could try one of those bed lounge pillows. The kind where you can kind of sit up in bed to read and whatnot.

The other thing that made recovery easier for me was a mastectomy pillow. It's a long rectangular pillow that has cutouts on top for your arms and you tuck the ends behind you. So it kind of gently hugs your chest. The set I bought had the main pillow, 2 small heart-shaped pillows (perfect for tucking under your arms) and a seatbelt pillow. Best of all, they were made out of really soft dotted minky fabric. There are several people that sell them on Etsy. I still sleep with a little heart pillow tucked under my arm so my kitty doesn't plop down on my boob in the middle of the night