Saturday, June 4, 2011

2 Out of 3 Prefer Open in the Front!

Lovely Pink Paper "Vest"
Today was the day when I would get ALL the answers - I would have three doctor appointments and at the end of the day there would be solid plans for my treatment and I would know everything.  Too bad it didn't work out that way.  After the three appointments, I'm more confused than ever and I have determined that at some point during the day; I officially crossed the line into having TOO much information.  I might need that OTHER Valium!

The day started early at the surgeon's office.  We arrived late at 9:40 for our 9:30 appointment (we told them we would be late because we have kids to get to school, they said that was fine).  Checking in took a long time and we waited a long time in the lobby - 40 minutes passed (and everyone that came in went in before us...) before I got up and said, "YoooHooo, I'm still here."  :)  Turns out they still had me on the schedule for a 10:50 appointment despite them calling the day before to beg me to come at 9:30 instead.  Ugh.  We were quickly shuffled back into a room where we got to wait a really long time in confinement instead of in the lobby.

Upon arriving in the exam room, I was given the flimsiest piece of paper I've ever seen (pink of course!) that I was supposed to wear - "Open in the Front!" the nurse chirped.  My husband and I had a good laugh at the sight of me in this get-up.  It didn't close in the front and it didn't even cover my poor sad boobs!  And I was supposed to meet the doctor for the first time in this get-up?  AND have a serious conversation with this doctor?!  Um, my Mama didn't raise no fool, thank you very much!  I quickly searched around for something to preserve the last shred of modesty and dignity I had.  I found the pillow.  The pillow and I became best buds.

Oh ya, I touched it!
This is the point where things got really silly.  We were bored.  We spent a lot of time laughing about how the surgeon is named "Gallagher" just like that comedian who smashes watermelons. As we waited and waited some more, my ever-entertaining husband got goofier by the minute.  He started daring me to do things that you aren't supposed to do like TOUCH the thermostat that had a sign on it that said, "PLEASE DON'T TOUCH!"  Well, I DID touch it - SO HA!  I'm a rebel, yep, that's right - R.E.B.E.L. is my middle name.  As we got more and more bored, my husband started tapping out morse code on the wall in hopes that someone would decode it and come in.  I made him stop and told him, "OH!  This is SO going in my BLOG!!"  I'm sad to say that being threatened with public humiliation did nothing to deter his bad behavior.

Thankfully, I was saved by the doctor coming in - FINALLY!  The doctor introduced himself and then laughed at my death grip on the pillow.  He asked why I was holding on to his pillow for dear life and my husband blurted out, "SHE'S COLD!"  Haha!  So, I said, "Well, yes, I was cold, but also, I just felt really immodest..."  The doctor seemed totally shocked by this!  Like how could I possibly have an issue with sitting around with my boobs hanging out?

The doctor took away my friend, the pillow, and examined me.  My husband takes great issue with his examination (and all of the doctor's examinations on this day) because he doesn't think anyone should be having to touch the GOOD boob!  I told him it's for comparison sakes - my husband continues to be skeptical about this.  After the doctor completed the exam, he gave me back my buddy, the pillow.  What a pal!

Doctor #1 (Surgeon) Recommends: Mastectomy.  He feels that since I have TWO cancers, the same type of cancer but not the same cancer - two separate events - it's too risky to keep the breast.  He could do a lumpectomy if that were my choice - but it makes him nervous.  Too much chance of recurrence.  AND since I have been "blessed" with large breasts - it would be best to do a double mastectomy.  We could just take one, but then I'd be looking at several reconstructive surgeries on both breasts to make me even close to even again because they'd have to reconstruct the left breast that would be gone and they'd have to totally redo the right breast so it would be smaller to match the other "new" and improved breast.  Not to mention that if I left just one breast, I'd have just one breast during the whole time of my treatment - could be months.  There are prosthesis but they are difficult to wear, etc.  So, imagine me walking around for months with one boob - oh ya, that's not at ALL weird!

You don't really realize how attached you are to something "silly" like your breasts until you look down and try to imagine yourself without them!  I kind of like my boobs!  They aren't perfect, let's face it, I'm 41 years old - they've seen better days.  But they are MINE and they are part of me.  I can almost wrap my mind around losing my left breast (the one with the cancer) but it's just heartbreaking to think of losing the healthy right one.

My husband tried to soothe my fears by saying that, for instance, if he had testicular cancer, HE wouldn't mind if they took BOTH testicles!  I said, "That's ridiculous!  No one sees your testicles!  What does that matter?!"  He pondered this for a moment and then said, "Okay, so say I had 'Butt Cheek Cancer,' I would say 'Just take both Butt Cheeks and get it over with!'"

Wow.

After leaving the lovely paper vest behind and saying goodbye to my pillow friend, we had a quick lunch at Ihop before heading to appointment #2.  This one was at the Cancer Center.  Appointment #2 was with the Radiation Oncologist - the person that would be managing my treatments should I have radiation treatments.  First I met with the nurse who asked almost a million questions.  Then, once again, I striped down and put on a hospital gown.  I was so thankful to see a hospital gown!  Woot!  Open in the back this time - Weird!

Smallest Exam Table Ever!
The doctor came in and chatted a bit about my history before examining me on the teeniest exam table I've ever seen in my entire life.  After the exam, he let me get dressed before returning to chat about treatment options.

Doctor #2 (Radiation Oncologist) Recommends: Lumpectomy.  He says that since the two cancers are close enough together, they can just take the lumps (and some tissue) and lymph nodes (4-6) and then chemo (maybe - though he feels it's very likely given my age and fact that there are two cancers) and then I'll have 7 weeks of radiation which he feels would bring my risk of recurrence down the same as if I had a mastectomy.  He doesn't see the need for a mastectomy but says it's my call.  He is confident that the oncologist (my next doctor appointment) will concur.

Now Greg and I are feeling kind of silly for getting on board with the whole "Let's just chop them off!" train.  If 2/3 of the doctors say Lumpectomy - well, duh, that seems like the way to go, right?  Unfortunately, the next doctor did NOT concur with his colleague.

Before moving on, I must impart the best part of this second doctor appointment.  This doctor, the radiation oncologist, was an older gentleman, probably in his 60's.  He was very irritated that the IT department had installed pictures on his exam room computer - so that whenever the computer went to sleep, the pictures of staff would scroll through.  He was very distracted by the pictures and he kept getting off topic in the middle of sentences.  He wondered aloud if they were real people or if the IT department had just gotten pictures of people off of Google (LOL) and when a picture of a bunch of Nuns came up, he said, "See!  Aren't they scary?!"  LOL  So, as the doctor once again got distracted in mid-sentence by the pictures of the scary nuns scrolling by, Greg reached over to the computer and tapped a key so it would come out of sleep mode and just be the regular "Windows" screen.  This is where the doctor looked at my husband like he was the smartest person on the planet! A GENIUS!  His mouth was agape!  It was hilarious and we all burst out laughing!  He really was just so amazed at what had just happened and asked Greg to please tell him what he'd just done!!!  Haha!  Before we left the room, Greg changed the screen saver to come on only after 60 minutes - so hopefully that nice doctor can avoid the scary nuns in at least one of his exam rooms...  I'm sure he's a very good doctor but he really knows nothing about computers!  ;)

Now, we moved up one floor for our appointment with the oncologist.  We checked in and this is where we first found out that TODAY was National Donut Day!!!  Why did no one tell us this?!  We would have totally celebrated!  This is a holiday I can fully support, thank you very much.  Anyway, much to our dismay, there were only 3 sad little donuts left on the table and neither of us felt brave enough to "celebrate" by eating one of the crusty donuts.

We waited a bit and then were called back and seated in a conference room with comfy couches.  Greg was thrilled that, finally, we'd found a doctor that I wouldn't have to take my clothes off for!  I told him it was only a matter of time...and I was right.  The Oncologist entered (and I already know him because I've had struggles with anemia in the past and he's my anemia doctor) and chatted with us a few minutes before leading us to an exam room and giving me a hospital gown (open in the front!).  This one was lavender!!  Or, at least it used to be lavender before it was washed about 1,000 times...  I was just happy to see a different pattern.  The same drill followed, exam, poking, prodding - and by this time my poor left boob is getting really sore because I'm STILL bruised from the biopsy 12 days ago and still sore.  Get dressed again, doctor comes back.

Doctor #3 (Oncologist) Recommends:  Mastectomy.  He does NOT agree with the Radiation Oncologist. Since there are two cancers, unrelated to each other, in the same breast, 6 cm apart - one considered small, one considered medium - this warrants not trying to keep the breast.  He feels that there is likely something "wrong" with this breast that is making cancer grow.  Too risky to try to keep it.  I'll be somewhat protected by a cancer drug I'll be put on for 5 years - but it only works for 5 years and after that, my chances of getting cancer again, especially in this same breast. are really high.  Double Mastectomy is up to me.  But, he agrees that there would be no way to get a matching "pair" without taking both and then starting over. Plus, I'm at a higher risk for getting breast cancer in the right breast.  He also brings up that I should have a hysterectomy (not the first time I've heard this - it was also suggested at the Breast Center) because I'm producing too much estrogen and I have the type of cancer that just LOVES estrogen.  Again, increasing my chances of getting breast cancer again.  If I have a mastectomy, then the hysterectomy (ovaries too) is not AS important but probably still inevitable at some point.  We won't know about the chemo recommendation until after surgery when they see how big the largest tumor really is (it's measuring at 17 mm on the MRI which is just under 2 cm).  If it's 2 cm, then chemo is for sure.  If it's in the lymph nodes, chemo is for sure.  The MRI shows that my lymph nodes are swollen which can indicate cancer there, but that could also be swelling from the biopsy still hanging around too - so we won't know anything for sure until after surgery.

To say that it was a day of confusion and crazy emotions would be the understatement of the year.  It's now 3:00 a.m. and I've been up since 8 a.m. after barely sleeping.  My head is spinning and I can't think straight.  I had dinner with BFFs tonight and they all say, "Go for the Mastectomy - Get great boobs!  We want you around for a long time!  Do what is going to be safest for your future!"  (And then SOME people just wanted dibs on getting to fondle my new boobs *cough* SHEREEN *cough*).  They are right - BUT wouldn't you want to save YOUR boobs?  How can I cut off something that is such a part of ME?!  I know it's silly and I know it's just a BOOB (or two) but, wow, I never thought I'd be faced with this choice at 41 years old!  I never thought I'd be faced with this choice at all!

To break it down, my two choices are:

#1: Lumpectomy, maybe chemo, radiation for sure, hysterectomy for sure
#2: Mastectomy, maybe chemo, maybe radiation, maybe hysterectomy

Who in their right mind can even MAKE that kind of choice?

So, where do we go from here?  I find out the results of the genetic testing on the 16th.  I have an appointment with the plastic surgeon to discuss reconstructive breast surgery options on the 21st.  I'll need to make a decision within the next couple of weeks so as to schedule the surgery end of June or early July.

Now, where did I put that Valium?

People Outside My Family Who've Seen My Boob: 14
Boob Count: 32

9 comments:

  1. Laura, I know all too well how all this uncertainty feels. The decisions are huge, and it's so hard to know what's "right." I'll send you a message with many, many more thoughts later. Hugs.

    Beth

    PS - oh, and the indignity of the exams is something, isn't it? I swear that more people have seen my butt in the past 6 months than I ever considered might want to look at it. Sheesh!

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  2. The genetic testing results are key to this decision, I think. If you carry the "bad" breast cancer gene, then the masectomy + hysterectomy is probably the best course, because that gene is behind a lot of reproductive cancers (so if the breast cancer doesn't kill you, you can get uterine, ovary, or cervical cancer. Gee, thanks Mother Nature!)

    If you don't carry that "bad" gene...then, hmm. A less invasive first path might make sense, with the knowledge that down the road you might have to have the more radical procedures.

    Bear in mind the different doctors' perspectives - it would be HIGHLY unusual for a surgeon to suggest anything but surgery (and to him, it's simpler/cleaner to just get rid of them both.)
    - It's not that odd to hear the radiation doc thinks radiation can cure you.
    - The fact that the oncologist wants the masectomy is perhaps the perspective that needs the most weight. But does it? This is the doctor you have the longest-term relationship with. Do you trust his point of view? Is he looking at the patient, not just the disease? Looking at the recovery paths, not just the surgical outcomes?

    It's so much to take in, I don't blame you for being sleepless, but I hope you can find a way to get some rest and put these thoughts on the back burner so your subconscious mind can work on them. Many times our subconscious, when given enough time, can find solutions we didn't see when actively trying to solve a problem.

    Any way to get that genetic testing appointment moved up? I would think that's the most important next step and that's almost 2 weeks away!

    ((hug)) Thinking about you and hoping for the best. ((hug))

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  3. That is so much information to take in! My mother in law had breast cancer three times, and when she found out the third time it was there again, I know she wished she had just had the dbl masectomy the first time around. She did have the dna test for the gene and it was positive. Her 2 daughters were also recommended preventive measures, which they declined. I cannot imagine your choice and I am not sure what I would do. I am such a wimp that I would probably end up doing one more oncologist appt just to see if someone could "decide" for me. I am glad you have such a wise group of friends around you to support, advise, and uplift.

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  4. Oh, Laura, you put the "funny" in these things better than anyone I know, but this is just a gut-wrenching process, isn't it? I'm sorry you have to go through it. :(

    This:
    To break it down, my two choices are:

    #1: Lumpectomy, maybe chemo, radiation for sure, hysterectomy for sure
    #2: Mastectomy, maybe chemo, maybe radiation, maybe hysterectomy

    Who in their right mind can even MAKE that kind of choice?


    *Hugs* to you, my friend.

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  5. i love my boobs and would never EVER want to see them go. however, i think getting them chopped and get new ones is the best alternative. i want to be next in line to feel your new boobies!!!

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  6. The genetic testing itself actually takes 2 weeks so no way to get anything sooner. But, thanks for the thoughts Karen, it's a helpful perspective. If the BRCA gene comes back positive then it's a no brainer - everything goes. If it comes back negative, it's a little bit harder to decide I guess...

    Christa - you are on the list as #3! :)

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  7. Laura- From a daughter's perspective...a daughter who's mother has had BC. If she was told that a dbl. mastectomy as something that was being suggested (and maybe the hysterectomy too) I would want my mom to do it so that she was able to live a longer healthier life and see me grow up, graduate (college, etc.) , get married and have children. Now, from a child's perspective that might be a little greedy and only thinking about one's self but don't you want to be around for those things too?

    I am happy my mother made the decisions that she did and was a little more cautious and had them take more than needed. I would have supported anything she chose but she remembered what it was like to lose her mother when she was young. It's hard to think about and only you along with your husband can make this decision.

    I will be here for support and to lend an ear whenever you need it.

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  8. Remember... What you do now when you are young and strong opposed to later may be the difference. I was BRCA negative and avoided the histericalectomy. (I was 43 when diagnosed and have a 13 year old son. I miss my boobs but like the piece of mind knowing there is no breast tissue to become cancerous ever.)

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  9. Is adding back more than two boobs an option? Think of the power you'd have!

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