Surgery details – Second appt with Dr Ahrendt

These are the notes I took during my appt with Dr. Ahrendt this morning:

How long is the surgery?
10-12 hours

How long in hospital?
4 nights, 5 days

If it’s in the lymph nodes, will I need other treatment?
Will do a sentinel node biopsy; will reduce the risk of lymphodema as much as possible

If it’s in three places, doesn’t that mean it’s spread? Or all those all considered in situ?
upper outer portion in a band of 13 centimeters (usually it’s smaller than that) – higher risk of more invasive cancer – no mass or tumor shown – still will be early and not likely to to involve lymph nodes – she thinks it’s very unlikely that I would need chemo; probably no radiation either (my mother pointed out later that the doctor also said it was unlikely the biopsy would be malignant, but hopefully these odds are easier to predict).

Is the methotrexate ok to keep taking?
No, stop taking it. Stay away from anti-inflammatories as well a week prior to surgery.

Will I need a breathing tube?
Yes

Stitches or staples? Removal?
Dr. Gimbel does all of that – he will probably use dissolvable stitches

How long for the drains?
Will be up to Dr. Gimbel – usually the breast ones come out a week or so, abdominal might be longer

Should I give my own blood before the surgery?
Not necessary – do not do it because she doesn’t want me to be anemic at the time of surgery

Hormonal effects?
Most likely no – Not like ovaries

Can I drink between now and then? Anything else I should lay off of between now and then? Caffeine?
Ask Dr. Gimbel about caffeine. Drinking in moderation

Pain in breasts since biopsy
Normal

Dr Gimbel will be responsible for my care after the surgery – in terms of when I can drive, what I can manage physically, etc

Stay healthy – protein is healthy for healing – exercise

Walking two days after surgery – won’t send me home until I’m independently walking down the hall

Surgery Set!

I sent this email to my friends and family just now. I will upload the details of my appointment this morning at a later time – right now, my son is napping so I’m going to also!

Hi Everyone-

I wanted to let you know that I have a date for my surgery – March 11. Although it turns out there’s a lot more DCIS present than my doctor originally thought, she says it’s still non-invasive and I shouldn’t need any treatment after the surgery.

After meeting with several doctors, I’ve chosen a breast surgeon and a plastic surgeon who I really like, and I’m confident in their abilities. I will be having a double mastectomy, during which she’ll examine the tissue more closely along with a lymph node – this is just to verify that it hasn’t spread. At the same time, I’ll be having DIEP flap reconstruction – in English, that means a boob job and a tummy tuck – I’m actually kind of excited about it!

It’s a long surgery (10-12 hours) along with a long and difficult recovery, but I’m up for the challenge and will be completely relieved to know that all of the cancer will be gone for good.

The Chair of my department and HR have been very helpful – I will likely be taking an 8-week leave from work, and most or possibly all of it will be paid.

I’m trying to use this ‘occasion’ for advocacy and to make others aware of the need for early detection, particularly those who should be screened for hereditary breast and ovarian cancer (and Ashkenazi Jews specifically). Inspired by my new friend, Robin, who is the co-leader of the local chapter of FORCE, I’ve started a fundraising page. I hope you’ll take a look. As motivation for myself to get as healthy as possible before the surgery, I will donate $10 to the fund every time I eat cake or fried food between now and then (how embarrassing will it be when I end up the largest contributor?).

Thanks for your support so far.

Love, Bryna

Playing the Cancer Card

I can’t deny that I’ve been using the cancer card. It got me the appt I needed with the doctor today (was supposed to be next Tuesday). It got me the appt I needed with the doctor tomorrow (who wouldn’t have been able to see me for two more weeks). Now, I need it to get me some leave time from work. I’m eligible for 17 days of paid leave, but I need 40. Five days will be during my spring break, so really I only need 18 days of extra time. I can apply to my union’s sick leave bank. The fact that my union has this program where you can borrow sick leave (the days come from employees who have an overage) and don’t have to pay it back – it’s amazing. Here’s the sad pathetic letter I just wrote to them (which goes along with an application completed by my doctor):

To Whom It May Concern:

On January 10, 2013, I was diagnosed with ductal carcinoma – stage zero breast cancer. Because I am a BRCA gene carrier (cancer is hereditary in my family), I am at high risk for developing invasive breast cancer at a later time. Therefore, my doctors have recommended that I have a bilateral mastectomy with reconstruction before this current cancer becomes invasive. This is my best chance at eliminating the current cancer as well as the possibility of developing breast cancer again in the future.

I haven’t worked at *** for very long, but I intend to stay at the university for many years. I have already done significant service at the university and will continue to do so.

My family cannot afford for me to take unpaid time; it will be a significant financial hardship. I hope you can see it reasonable to grant me 18 days from the sick leave bank so that I can have enough time to recover adequately. I will do whatever I can in the way of service to the union when I return from leave.

Sincerely,

Plastic Surgeon Love

This afternoon I met Dr. Gimbel. I love this guy. He says I’m a perfect candidate for the DIEP flap surgery immediately at the time of the mastectomy. I already signed the paperwork to have him do the surgery. His secretary will call Dr. Ahrendt’s secretary tomorrow and they’ll work on a date.

Here are some of the responses to my questions he answered.

Recovery Time?
getting back to work 4-6 weeks. probably better to ask for 8 weeks.

Methotrexate?
Yes, must stop – figure out when the surgery is finished.
Diane (his sec) will start making phone calls today or tomorrow to set a date.

Humira injections in belly?
Start doing them in my thigh (this is the shot I take every two weeks for my RA)

Check CT scan?
It gives a map; he hasn’t seen it. He will check it before the surgery.

If you need more tummy flab, can you get it from my butt or somewhere else?
Cannot do that at spur of the moment. Could do that delayed.

Scar from hip to hip
10 hours of surgery
Will try to use as little muscle as possible (SIEA flap – no muscle at all)
DIEP will open up muscle but not usually take too much

Can be reconstructed immediately – plenty for a C cup
He can do a reduction and lift at the same time.
Any dog-ears (abdomen or below the breasts) can be nipped off at Stage 2

Next steps:
We’ll do paperwork
Diane will arrange scheduling

Risks
*Opening up at abdominal wound – does not usually require surgery to repair (it’s annoying but wouldn’t keep me home from work)
*Hernia is rare, but is a risk
*Bulge
*Flap failure (happens in the hospital in the first four or five days) – 2/3 can be fixed
*Long surgery = more anesthesia, more tired afterwards
*Energy-wise, will not be back to self for a year

Appointment with Dr De La Cruz

Impressions of Dr De La Cruz:
Really nice, understanding, did not give me a lot of information I didn’t need. She talks very fast, is not all that articulate, but I would feel confident with her doing the surgery – she is the head of this department.

General info from her:
Has she seen the CT scan? Is the tissue viable for a flap transfer?
She hasn’t seen it but will look.

Her recommendations:
She will do the surgery; her concern is not about downsizing. Her concern is more that I might not have enough tissue and then they would need to use muscle – this could lead to hernia later on. She also wants me off the methotrexate – it will make it hard to heal and can lead to infection.