Recent Dx-- ?s about surgery with 2 year old twins

TwinsMomma

Hi, my BC journey has just begun. I was diagnosed 10 days ago. My first appointment is scheduled with my surgeon's nurse practitioner on Wednesday. We'll be going over all the tests, pre-op, and process. What tests will likely be done?

My current Dx is Grade 2, 1.8cm, ER+/PR+ (60%)/Her2-. I am strongly considering a bilateral mastectomy. Is this crazy? I know that more tests are needed to determine the stage, so I might not have the option of choosing a lumpectomy vs mastectomy. I also understand from the research that it won't change my survival odds-- only a slightly lower likelihood of recurrence. However, with 2 year old twins, I feel I need to do everything within my power to prevent this from coming back. Advice?

Also, I'm wondering what to anticipate in terms of recovery from a bilateral mastectomy? I'm a single mom-- dad is very involved and lives in my granny flat next door. I've also had numerous offers to help with the twins post-surgery.

NancyD

I opted for a bilateral mx because I wanted a more symmetrical balance of my breasts after reconstruction. My recon was also delayed a couple years because of the treatment time—and because I wanted to explore all my recon options.

The mx recovery wasn't very involved. I didn't have any complications, so I was back on my feet within a couple of days, and although I could have gone back to work sooner, I opted to take a month off. The only restriction that might impact you with 2-year old twins is the lifting restriction. Until your wounds heal, you are told not to lift anything that weighs more than a gallon of milk, and I'm sure your twins do, lol.

If you opt to have the first stage of reconstruction done at the same time as your mx, your recovery will likely be harder/and or longer, depending on the kind of recon you have. If you opt for later recon, there still will be a harder recovery at that time, IMO, but delaying it will give you more time to put plans into place. That said, everyone's recovery from ANY surgery is unique.

TwinsMomma

Thanks, Nancy. I’m so glad to hear that you had a smooth recovery. I would also wait for reconstruction. Symmetry isanother reason I would opt for the bilateral Mx. Part of me feels guilty for feeling vain, but for me, it really does make a difference in how I feel about my body.

How long did it take until you could drive again?

And how long was it before you could lift 30 pounds?

I’ve already started encouraging the boys to climb up everything instead of having me lift them— they actually prefer to do it themselves, so that’s really great!

Lula73

twinsmama- I'm so sorry you've had to join the group no one wants to join. But you are in very good company with all of us ladies and men here on the BCO boards. Nancy did a great job running over the basics. One thing to consider is how many surgeries you'll have if you know you will have recon at some point. It can be 1 or 2 surgeries for everything and done or 3+ with delay. It's something to consider. Two other things you should investigate before making decision on when to do recon are:

1) what type of recon you think you'd prefer (implants recon - which is not the same as implants for augmentation or natural tissue reconstruction)

2) compare what the results look like for delayed recon vs immediate - they are often very different in appearance.

Here’s a link to a talk titled ‘I Wish I’d Known’ given by two of the top docs in mx and recon surgery. Very informative and put together for women who are in the decision making process:

www.breastcenter.com

If you have any questions about natural tissue recon, let me know,

Runrcrb

Twinsmama,

Sorry that you are going through this but glad to hear that support is available for you. My mastectomy was single and my children way past the lifting stage but ... I was sore after the mastectomy and there is an element of getting used to the numb feeling in the upper arm where they took lymph nodes. I was off work for 6 weeks and used all of it - lots of rest at the beginning. I walked every day, working up from around the block to an 4 miles in an hour before heading back to work. As to your driving question, no driving while on pain meds or while drains are in. I think my last drain came out at about 10 days.

Take your time in planning surgery and treatments. While breast cancer diagnosis is scary it's not always the case that rushing to treatment changes the outcome. Learn all you can about options and likely post surgical treatments as you develop a plan.

good luck

Cpeachymom

twinsmama- Hi from another mom of a two year old! It’s so scary, because we want to be around LONG TERM. My little one was not even a year and a half at the time of my surgery. The hardest part for her was momma couldn’t hold her. But I did use that time to get her used to going up and down the stairs.

If you have the option of a lumpectomy, the recovery will be much easier. I’m very glad to hear you have help, because you’re going to need it. Keep in mind, a mastectomy doesn’t guarantee you won’t need radiation either.

With a UMX, I would say I could lift her probably at 4 weeks without pain. Some docs give weight restrictions without realizing we lift this multiple times every day, so we’re conditioned. My surgeon said no restrictions, just common sense.

Good luck!

Tresjoli2

twins..so sorry this happened to you. When I was diagnosed, I had a 2 yo and an 8yo. (2yo was almost 3).

There are some practical things to think about and prepare for, but you can do this. For example:

After surgery, you won't be able to lift. So you need to start teaching your children to climb into their car seat on their own. Also, if you have a change table, how to climb up onto the change table. Lastly, get a step stool and a slip free matt so they can climb in and out of the tub.

Chemo, if you need it, may sap your energy. Buy puzzles and coloring books. Some days, you may have to entertain the kids in your bed while you rest.

My kids ate too much pizza, and watched too much TV during treatment. Its ok... they have turned out great. I told my daughter I had cells in my body that "broke" and when they broke, they had to come out. And I made light of my chemo. Oh sweetie, it's so crazy...I have to get sick to get better. Ha ha. My hair will fall out ha ha...isn't that so silly! I know that sounds bad, but it worked. They weren't worried, and my son later said to me "I was ok because you seemed ok."

PM me if u want to. U got this!

TwinsMomma

Thanks, Lula. I haven't researched reconstruction at all yet. I really appreciate the tips and resources!

runrcrb, Yes! I keep reminding myself not to rush... yet there is this other voice in my head saying, "Get it out, NOW!"

Cpeachymom, I'm surprised that you didn't have any chemo? I keep wondering if I will need it? Not being able to hold my boys is definitely the worst part. I *hope* they're old enough to understand.

Tresjoli2, thanks for the words of encouragement. I've started encouraging the boys to do as much themselves as possible. I already feel like they are watching too much TV... I've been on the phone so much scheduling with the dentist, doctors, etc. This is quite the overwhelming process.

Okkate75

I'm so sorry you find yourself making these terrible decisions! Whatever you choose to do will be the right choice. I just want to echo what your doc told you--there's no survivorship benefit to mastectomy. If you decide to get a lumpectomy and radiation, never feel you haven't done all you could do to be here for your kids. I know it *feels* like a more radical surgery means doing "more" to save your own life, but that's not really the case. Lumpectomy and rads can be a great choice as well, when made with a medical team you trust.

Cpeachymom

twins- well, my MO wanted to throw the kitchen sink at me, did not send my tumor for Oncotype, and I don’t think places much faith in it. But both my MO and my surgeon wanted me to get a second opinion in Boston, so off to Dana Farber I went. They sent my tumor for Oncotype, it came back low- showing negative survival benefits from chemo, so no chemo. I guess grade 1 tumors don’t respond to chemo. So while my tumor was big, I compare it to a fat lazy cat. 🙂

TwinsMomma

I love the fat, lazy cat analogy. =

Okkate75, thanks for helping to shift my perspective. You’re exactly right— I feel like a more radical surgery will mean feeling like I did “everything I could” to be here for my boys.

KCMC

OKKate is right the outcomes are about the same. Unfortunately I wasn't able to have a lumpectomy due to multi focal tumors and DCIS spread through out. The lumpectomy at first was the route I was going to take, they also offered interoperative radiation therapy, which means they would have radiated the spot right during surgery which means no radiation therapy after surgery. It sounded so good lol!

My kids were older 10 and 12 during my surgery. I opted to have a Double Mastectomy instead of a unilateral with immediate DIEP Flap reconstruction. First two weeks I was in bed most of the time. 8 weeks later I was up and dancing at a wedding. To me chemotherapy was worse than the double mastectomy and recon.

Try to plan ahead of surgery, I set up a table next to my bed for my meds etc. A basket too with snacks, water, chapstick etc. so I didn't have to get out of bed unless I had to go to the bathroom. Extra pillow in bed, maybe sleep in a recliner.

Another piece of advice accept all help offered to you. A lot of people want to help, let them, remember it feels better to give than receive, you can pay it forward in the future when you recover. My community set up a food train. I had food delivered to my house on Mondays, Wednesdays and Fridays. An account was set up at a local restaurant where people could leave $$ on an account for us. The restaurant delivered which was great. My food Train ran from May to September. If someone wants to do something and doesn't know what to do, you can ask them to set up something like this if you think it would help.

Just like OKKate said, whatever decision you make will be the right one for you. We are lucky we have choices. Good Luck! I know this stinks, but you can get through it! We are all here to support you.

Lula73

lumpectomy with rads and mastectomy without rads (provided no nodal involvement) have the same overall survival rate. However, the lumpectomy option has higher recurrence risk than mastectomy. Also, note that the survival rate is based on all cause mortality meaning it didn’t matter how the individual died - the death didn’t have to be in any way related to breast cancer to be included in the numbers. As we see many more younger women being diagnosed, it would be beneficial if studies were done looking at average survival rates and recurrence in just the younger population as numerically they are further from the average end of lifespan age when they were diagnosed vs someone 20-40 years older than they are If we’re going to continue to use all cause mortality as a valid endpoint to evaluate

Egads007

Tresjoli2 - the best piece of advice I saw here was your ‘my child was ok because you seemed ok’ story. I did the same, and it wasn’t easy, especially when I looked and felt so horrid. Kudos!

My hat goes off to you, and all here, when I wish you a Happy Mother’s Day!

Okkate75

Lumpectomy and rads shows a slightly higher rate of local recurrence, but metastatic recurrence rates are virtually the same. It is the metastases that kill, not the local recurrences, which is why I think my medical team stressed that doing one or the other isn't "doing the most" or more likely to save your life from breast cancer.

Tresjoli2

aww thanks egads!