BC, Triple Positive - Newbie

RachelP

Good Afternoon from Cleveland!

I am a newbie on this board. I had my first mammogram in July of 2022, as a prerequisite for breast reduction surgery - and it was negative.

By the grace of God, the pathology post reduction surgery showed what the mammogram didn't: Stage 1, Invasive Ductal Carcinoma - triple positive - right breast. The doctors were shocked it was even found, as breast reduction tissue is selected for removal at random while you are on the table, and the tumor was small, literally a few mm in another direction, and it would have raged on, undetected. As weird as it sounds, I am beyond grateful that it was caught - because without that surgery - I would have a different story to tell.

I opted for a bilateral mastectomy (non nipple sparing, it wasn't possible because of the prior surgery and proximity to the remnant of the original tumor) with immediate reconstruction for a couple reasons:

1) The answer to watching for cancer in the Left Breast was.... you guessed it.... a mammogram. For me, mentally, it just made sense to get the left one out at the same time. What if it happened again on the left side and then I had to go through all the treatment again - no thanks!

2) Symmetry. I like symmetry, even if it meant I had to lose the healthy breast. I didn't want a reminder on the left of what I went through. And I wanted them to match.

The BM was successful: Clean margins and Negative node. (only mapped to one node, which they had to remove for testing anyway). So I have escaped radiation treatment. I am finding out tomorrow what the chemo/herceptin schedule will be.

I have a strong support system and a plan for myself to control that which I can control, but I came here to find out if there are things that my fellow survivors recommend, to find out what I might not be thinking of. So please share any helpful information you have, it is my plan to make this disease crawl back into its own @sshole and die - so anything you have to share, I appreciate it very much. Also, if anyone that is new has a question for me, let me know, I am new to this process so I may not be that helpful, but I am offering it just the same.

From one fierce warrior to all the others, thank you in advance. :-)

Have a happy day,

Rachel in Cleveland

staceyelliemay

Hello Rachel from Cleveland

As you I am new to this process. I join this network of fierce warriors last week. I’ve been chatting with some amazing ladies who have been extremely helpful. In October/Nov. 2022, I was diagnosed with DCIS stage 0 in both breast. RB was detected with regular mammogram and confirmed with biopsy. Doctor ordered MRI with contrast and detected something suspicious in the other breast. Without that MRI the LB could have gone undetected. Regular mammogram did not see it. (Yikes).

My surgery is set for 1/11/23. I will have BM with reconstruction same day with 2-4 lymph nodes removed. As of now no chemo or radiation is in the plan. Obviously, That could change based on pathology of the lymph nodes.

yes I agree this disease can crawl back and die ! Great to hear your clean margins and negative node. Thinking about you and your next steps. Love to hear how you are doing! Kick @ss and we got this !! 💕

Stacey from Florida

RachelP

https://csn.cancer.org/discussion/comment/1702929#Comment_1702929

Just a couple more days until your surgery Stacey!!

I just received my chemo treatment plan. Since the tumor was HER2 positive I will have a year of infusion treatment every three weeks. For the first 6 treatments, I will have Ducetaxel and Carboplatin, plus Herceptin. Then after 6 cycles, the chemo drops off. I am grateful for only 6 chemo infusions!

I am getting a cold Cap for the chemo treatments. I took escaped radiation. I am thinking of you and hoping the pathology comes back aces for you!!!!

R.

jazalea

https://csn.cancer.org/discussion/326105/bc-triple-positive-newbie

I am in Cleveland too. I am glad.to hear your surgery was successful and I hope your recovery continues to go well. I am having double mastectomy soon. What was the healing process like for you afterwards? What would you recommend I do/buy beforehand or bring with me to the hospital?

RachelP

https://csn.cancer.org/discussion/comment/1702989#Comment_1702989

Hi there!

The healing process was fairly fast. I had tissue expanders put in right away, and I would say the first 2 week are the most challenging. I felt like myself again by week 3. My best advice:. Drink as much water as you can, when you can, walk and of course sleep as much as you can and take the pain meds on a schedule. Once you have break through pain, it's hard to catch up. I was on pain meds for about 5 days. Do your stretches! I cannot emphasize this enough. It will suck at first, but do them anyway. Also, if you can eat somewhat healthy it helps you heal faster. Even if it is just some added fruit

Things that I found helpful:

-a fanny pack for the wound vac. This way I didn't have to clip it to my pajama pants. If they give you a wound vac, this will be annoying but helpful.

-depending on your specific situation, you may have multiple drains. These will annoy you to no end, but they are necessary. I got a belt to hold the drains. At the hospital they paperclipped them to my gown. At home, you don't want the drains connected to your clothes. Here is a link to what I bought on Amazon:. Fanwer Mastectomy Drain Holder - 4 Drain Pouches with Shower Bag, Adjustable&Handy, for Mastectomy Recovery, Breast Augmentation&Reduction Post-Surgery, Drain Holder After Tummy Tuck, Blue https://a.co/d/55rwYV2

-Button down shirts. For the 87 appointments you have after, you will want these. By week 3, I was able to pull a regular shirt on, it was heaven. Celebrate every win!

-If you like to read: books!

-If you like TV, pick something to binge watch.

-slippers, with a good grip!!! Don't walk around in sock feet, you do not want to slip.

What I would not buy:. The breast pillow. I bought one and used precisely one time, to ride home. I could have just as easily used a throw pillow from home.

Lastly, believe in yourself, this is hard and the mental battle is worse than the physical battle. Be kind to yourself, if there is ever a time for that it is now. Try to LAUGH! I have a couple people in my support system who make me laugh so hard I almost pee my pants. When they are around, I watch a comedy special. Laughter is the best medicine.

I know this was long, I tried to think of everything. Keep me posted on how it goes and I am rooting for you, thinking of you, praying all goes smoothly for you!! From one warrior to another, you got this.....♥️

R.