Decisions, Decisions

I saw my Oncologist on Tuesday and talked with him about what the Radiation Oncologist had told me about recommending more chemo.  Apparently he had "spoken out of his expertise" and I will NOT need anymore chemo.  My oncologist said that if the chemo didn't work the first time, it won't work a second time either.  A different kind of chemo will not make a difference.  As I've stated before, my kind of cancer is highly estrogen + and highly Her2 +, which means the cancer is being driven by either the estrogen or the Her2.  Since the chemo didn't work, this suggests that my cancer is driven by the estrogen.  Therefore, the drug Tamoxifen will prevent any further growth of breast cancer cells.  I was under the impression that I wouldn't start Tamoxifen until ALL my treatment was complete (May 2014), but he said I could start it as soon as my chemo was done, so he went ahead and wrote the prescription for me.  I'm really nervous about taking it, and therefore haven't started it yet.  It's sitting in a drawer in my bathroom.  I have heard that it gives you hot flashes which, let's face it ladies, are NO FUN!  I have had these already throughout my treatments and I am not looking forward to them coming back.  However, what scares me the most is the risk of uterine cancer.  I mean do I really need to trade one cancer in for another???  I shared my concerns with my nurse and she said that of all her patients, she's only known of 1 who developed uterine cancer while on the drug.  And IF I were to get it, it would be years down the road, like 10+ years.  She said the risk is low, but as always I must way the risks, and she said the benefits out way the risks for this drug.  She said that if I were her daughter, she would tell me to take it.  So, I'll take it, but I'm not looking forward to it, especially since I have to take it for the next 5-10 years of my life!

Today, I had another appointment with my Plastic Surgeon.  As of right now, I am not happy with the way my breasts are looking.  I don't think it has anything to do with the handy work of the surgeon, it's just the way the expanders are filling out, the pockets that were created after the tissue was removed, and the scar tissue that is developing.  My right breast is lower and "plumper", and my surgeon says bigger (although I swear it's smaller).  But todays' appointment reassured me.  The surgeon said that during my next surgery he will be able to lift up the lower breast, which will make them look more even and IF needed he can later make a tissue deposit from my belly to the breast to fill in any differences.  I think I am at the size I want to be right now, so I scheduled the date for my next surgery...December 6th.  Now, I just need to decide if I want gel or saline implants.  To my surprise, the Plastic Surgeon said today that over 50% of his patients have chosen to go with gel implants.  My next follow-up with him is on Nov. 11th and I think a decision will be made then.

The Good, The Bad & The Ugly

I went to see a Radiation Oncologist at the advisement of my Breast Surgeon today.  My surgeon said that he didn't think I would need radiation, but that it would ultimately be the call of the specialist.  To my surprise, the Breast Navigator was there.  I was so thankful for this, because I had showed up to the appt. alone.  She kept me company and helped me understand what the doctor and nurses were telling me.  At first, the NP came in and explained exactly what radiation entailed.  What the appointments would be like and what radiation involved, etc.  She was so detailed it began to worry me. So, I asked her "does this mean I'm definitely getting radiation?"  She said that I'm a "candidate" for it, but that the decision is up to me...if I don't want to do it, I don't have to.  This confused me a little, but luckily she was just a "prep" before the doctor came in.  As soon as the Doctor came into the room he told me "You do not need radiation!"  WOOHOOO!  Oh my gosh, I was soo relieved!  Radiation is a scary thing, especially when you have implants.  It interferes with the implants and the scar tissue.  I was very worried about that.  The doctor continued to explain why he felt that I didn't need it and wouldn't benefit from it.  However.......the bad news:

As I explained in a previous post, my initial breast MRI showed my tumor at 2.9cm, after chemo I received another breast MRI which showed the tumor size at 2.1cm.  The point of chemo is to rid your body of the residual cancer and shrink any tumors.  Most of the time, the tumor will shrink so much it can't even be seen.  So, since mine only shrank 0.8cm, this was extremely disappointing.  It basically means the chemo didn't work.  Therefore, the Radiation Oncologist said because of my age and the aggressive nature of my cancer, he thinks I should try another/different regiment of chemo.  He said most patients will do chemo AFTER the surgery anyway (instead of before like I did).  Soooo, he said he's going to talk to my Oncologist and get back with me about what they decide on whether I should do more chemo (eek!).  I'm conflicted about this option because obviously chemo is nothing fun.  It's awful, I will feel bad (possibly even worse than before), I will lose my hair again (which has just started to grow back), I will have to miss more work, etc.  BUT, I want to do everything possible to make sure that this cancer is completely gone and does NOT come back.  I want to exhaust all my options and make sure I do everything I can to get back to good health and stay in good health.

Because of the extensive history of cancer on BOTH sides of my family, they also want me to see a geneticist.  The following cancers are in my family history: bladder, liver, breast, skin, prostate, cervical, and lung.  The doctor couldn't believe it today when going through my family history.  He was astounded!  So, that appointment will be interesting.  Hopefully it will give me good news and not bad.  But she's booked until December, so I'll have to wait a while for that.

Please keep me in your prayers, especially while I await the decision about more chemo.  Also, while I heal from the initial reconstruction surgery, head towards the final reconstruction surgery, return to work at the end of October, and see the Geneticist.

Doctors, Doctors and more Doctors

I had several doctors appointments this week.  Tuesday, I had my post-op appt with the Breast Surgeon.  He went over the pathology report and said everything looked good.  I won't need to see him again for 6 mos.  The pathology report showed that the only cancer was the tumor that we already knew about in my right breast and it was apprx. the same size we thought it was (very slightly smaller).  Also, they found a benign fibroadinoma in my left breast.  He also said that it showed no cancer behind my nipples, which is good news because that means I get to keep them!  So overall, very good pathology report!  He said that he doesn't think I will need radiation, but wants me to see the Radiation Oncologist for him to give me the final word on that.

Then, on Wednesday, I had another appt. at the Plastic Surgeon's.  I had the final two drains removed (YEAH!!), and more fluid injected.  He said I will probably get filled a couple more times.  The tape was also removed over the incisions so the steri-strips can fall off.  What I have to realize is that getting implants due to breast cancer is completely different than getting breast implants for augmentation purposes. With breast cancer, all of your breast tissue is removed (and with some women the nipples are removed also), so the implants are there to replace that missing tissue.  With augmentation, all the breast tissue remains which helps plump up and enhance the breast.  So breast cancer patients don't get the "vavoom" effect that augmentation patients do :(

Then, on Thursday, I had an appt. with the Dermatologist for a skin cancer follow-up. As you may recall, I was diagnosed with melanoma in January of this year.  During my B.C. surgery, I had my mom swipe a surgery marker (what they use to mark/draw on your body with).  I later used that to circle all the moles and freckles on my body that were new or had changed in the last year.  With chemotherapy, you're a lot more sensitive to the sun and you're suppose to limit your sun exposure.  Therefore, I had developed quite a few new moles in the last 4 months.  So, I went into the office with probably 20 purple circles all over my body.  Funny enough, my Dr. was super happy and impressed with this idea!  I ended up getting 2 moles biopsied, but the Dr. said he feels that they will both come back benign.

Post op

I went to the plastic surgeon for my post op appointment yesterday.  For the past week, I have had to empty 4 drains (2 on each side) every four hours and record the amount of fluid that is extracted from each drain.  I took that record into the appointment with me, and according to those numbers, the Dr. said he could remove 2 of the drains (1 from each side).  The drains were inserted into my side, held with one stitch and bunch of tape and gauze were placed around it.  It was pretty painful to remove them.  Luckily I am still pretty numb all over or I'm sure it would have hurt a lot worse.  While there, the Dr. also injected more saline into my temporary expanders.  I will go weekly for this to occur for a while.  He looked at my incisions and said that they looked good and everything seemed to be going well.  So I go back on Wednesday to hopefully get the other 2 drains out and receive more fluid.  Right now I'm progressing well with the help of pain meds and sleep :)



This is what I look like right now (on one side).  The incision was made under each breast.  The purple circle at the top is where they inject the saline.  The one drain that is left is under the purple circle.  The white guaze at the bottom is where they took out the other drain.

I'm home!

The surgery is over and the tumor is gone!!!!  I have been laying low for a week at my parents house. It's been nice with the holiday weekend, my parents have been able to stay home and take care of me. I have been in immense pain with bad nausea the entire time.  I spent 23 hours in the recovery unit at the hospital after my 7 hour surgery.  An anesthesiologist surgically implanted a pain blocker in my back to block the nerves in my chest and help with the pain after surgery.  It was suppose to last 3 days and it only lasted 1.5days (we still can't figure out why).  I think I have the nausea under control now.  I think I just wasn't eating enough before taking my pain pill each time.  I also have two drains inserted on each side that have to be emptied every 4 hours.  Mom and Dad have been getting up in the middle of the night to do that for me.  I've pretty much been sleeping all day.  I've had several visitors already.  Lots of people bringing us food.  Even though I haven't been able to eat much of it, it looks really good and my parents are enjoying it!  My mom has said several times that it's been nice getting a home cooked meal without having to cook it herself.
Thank you everyone for the love, support, encouragement, and prayers throughout this ordeal.  It has been a rough road for me, especially this last week.  I know I made the right decision, but it is hard to deal with right now with all the pain.  I have a post op with the plastic surgeon tomorrow (Thurs) and hopefully 2 of the drains will be removed.  He should also be filling the expanders some.  I took a total of 8 weeks off work, so visitors are always welcome!  I'll be at my parent's house in New Pal for 2-3 weeks then back at my house in Indy.


In the recovery unit.

http://www.takethemameal.com/meals.php?t=JHAD2639
password: survivor

Disappointed

I had another Herceptin treatment on Friday and met with the Oncologist.  I hadn't seen the Oncologist in probably 2 months.  I had been seeing his NP every time I'd been going in for a while now.  He gave me some disappointing news.  I had a breast MRI post chemo to check the progress of the chemo and the size of the tumor.  The original size was 2.9cm.  The current size is 2.1cm.  The Oncologist was disappointed with these results.  He said that he was expecting the tumor to have shrank much more than that with all the chemo I received.  He said that my cancer is strongly Her2 positive as well as strongly estrogen positve.  Therefore, either one could be the driving force for this cancer.  Apparently, since the tumor didn't shrink very much, it appears that estrogen much be the driving force.  (If it was the Her2, the chemo would have worked better since I'm getting Herceptin)  Soooo, in other words all that chemo was pretty much pointless.  I lost my hair, had all those horrible side effects, and missed all that work for nothing!!!  It's very discouraging!  However, he said that because it looks as if the estrogen is the driving force, the Tomoxafin I will be receiving as the end of all of this will do the trick.  The upside is that this news make me more confident in my surgery decision to take them OFF!!

Surgery Decision

    I met with my plastic surgeon last week and discussed what a mastectomy with reconstruction would entail.  I had a consultation, looked at some pictures, and asked a lot of questions.  I left the appointment more confused and concerned than before, however.  There were a lot of questions that he couldn't answer for me, but then there were also a lot of decisions I needed to make that I wasn't aware of...decisions with a lot of different options.  In the following week I was so overwhelmed and frustrated every time I would try to think about it and think of the options and try to make a decision, that I would just cry and push it out of my mind.  I eventually got to the point where I said "I'm not going to think about it again until my appointment on Tuesday."  Well, luckily I have some great people in my life, including a co-worker who is a survivor, who talked with me and calmed me down, as well as my nurse Navigator who is WONDERFUL! 
   Today, I met with my breast surgeon and asked him the questions my plastic surgeon couldn't answer.  We went over all the options, discussed them thoroughly, and what the benefits were of each.  I asked my Nurse Navigator to sit in with us, to help me make the decisions I needed to make; and along with the help of my Dad, we all came to a general consensus.  Drum roll please.....................A nipple-sparing double mastectomy with implant-based reconstruction!  That's a lot of big words, so let me break it down for you.  I will have 99% of both breasts removed.  Only 1% of my breast tissue will remain which will mostly be skin and a small layer of tissue under the skin.  They are going to save my nipples (YEAH!), and then place temporary implants under a layer of muscle.  I will go in once a week for a few weeks and have those implants filled with fluid to expand the implants to the desired size.  Those implants will stay in for 3-6 months, then they will be replaced during a second surgery with the permanent implants.  With this surgery my breasts should look exactly as they do now!  They are hoping to make the incisions under my breasts near my ribs, instead of around my nipples.  If that is the case, there won't even be any visible scars!  I am SOOO happy with this decision.  With this decision I will not have to worry about bi-yearly exams, plus there is a much lower chance of reoccurance.  The biggest downside is that I'll lose most of the feeling in my breasts and nipples.  I am so relieved to have made these decisions and am looking forward to the surgery on August 29th.  Please pray for my Plastic Surgeon Dr. Stahlnecker and my Breast Surgeon Dr. Nate.  They will be joining together for the surgery.  I will be spending 23hrs at the hospital.  The surgery itself will take approximately 6hrs.  It will be done at Community North Surgery Center.