9. Surgery phase one a success

Wednesday April 20th, I had my left breast mastectomy. Mom and I got to UC Davis nice and early. Missed a gnarly rollover accident by about 15 seconds! Saw the dust fly we were so close! Very scary on the way to UCD.... My appointment at nuclear medicine in the radiology department to inject the blue die and radioactive tracer was at 9am, we arrived at 8am and got in sooner. In fact they were done injecting me by 9am. Uncle David came up here to sit with mom during surgery and my fabulous boyfriend, Kevin, was here as well after working half a day. 

With the radioactive tracer now in my system, they took me to admissions and then off to Pre-Op. Had so many people coming in and out of there, it seemed like a revolving door on the curtain. UCD is a teaching hospital and there were several interns and residents working along side of the surgeons and anesthesiologists. Even had an engineering student observing as she ponders a change in her major. It doesn't bother me that there were so many people around, new doctors have to learn somehow. I was assured that only the licensed professionals were the ones making the cuts.

Dr. Steven Chen did the sentinel node biopsy and also performed the procedure to remove the breast tissue while saving as much skin as possible to help with the reconstruction phase, which should start in May. Dr. David Sahar is the plastic surgeon who put a tissue expander inside my breast cavity and closed me up. The expander is to make room for the stomach fat to be transplanted to my breast. The additional skin needed to complete the reconstruction is also from my stomach. So it seems I not only get a "boob job" but I will receive a minor "tummy tuck" in the process. Though I always thought I would NEVER get a tatoo, it seems my areola will have to be tattooed on!  I know.....GROSS huh! Lets just say I won't be entering any nude beauty contests :-)

After sitting in recovery for a few hours, a bed was made available on the 8th floor. Mom was a little anxious because the plastic surgeon got called away on an emergency after I was done. No one came to the waiting room let her know I was out of surgery. She found out I was in recovery 3 hours after I was done in OR when she finally asked a nurse what my status was. 

As it turns out, the surgery went very well. The node biopsy was sent off to the lab for a quick test that showed no cancer in the lymph nodes. This allowed me to keep the rest of my nodes and virtually eliminated the chance for lymphedema, which is AWESOME!! They also put two drains inside of me that carry fluid out of my body. This is kinda gross. Kevin has taken lessons on how to clean out the drains.

Nurses have been giving me pain killers for the last two days. Managing the pain of an elephant sitting on your chest is not easy to do! First it was just Diloted in the IV, then they added pill form of Norco and now I am on the Percoset. Finally something that helps reduce the pain to a manageable level without use of the IV.

I am on the mend, but still having some pain. Looks like today, Friday Apr 22nd, is the day I will be released!  follow up appointments have been scheduled for Tues Apr 26th with Dr. Sahar to see about removing the drainage tubes and Mon May 2nd with Dr. Chen to review final pathology reports. Hope to get reconstruction scheduled for Mid-May. 

8. Sorting out the choices / Pre-op appointments

As I struggled with which type of reconstruction to do, there were lots of unanswered questions. I felt it was best that I meet with the plastic surgeon at UCD on April 5th before deciding whether to follow through with another second opinion at UCSF that I scheduled a month ago.

On April 6th I had a call with an intern at UCSF who was working with patients to write down their questions, goals and objectives for the consultation so the doctor could review them ahead of time and be sure to address them all. It is a great program.....they will keep track of the questions, help you figure out which questions to ask, attend your appointments with you and keep track of all the information for you as well as record it, and provide the questions and answers all typed up. My mom has been recording my appointments, but the process would have been helpful in the very beginning to sort out the questions I did not know I had.

As we walked through the questions, I realized it was necessary to cancel the appointment at UCSF. Many of the questions I had a month ago when the consultation was scheduled have either been answered or should be asked my treatment team. The UCD staff make me feel comfortable and the 45-60 minute drive is not so bad. So I am very comfortable having the procedure done at UC Davis. Certainly there another recently diagnosed woman with breast cancer who would get much more out of the doctor's time at UCSF.

Given that mastectomy surgery is schedule for the 20th, I scheduled pre-op appointments for April 12th with the plastics doctor to go over paperwork and any more questions I may come up with and April 14th to meet with the cancer surgeon to get all the blood work and stuff done.  

With so many question still rolling around about the DIEP Flap vs Implants decision that I felt pressed to have to make before my pre-op appointments, I called UCD to speak to the plastic surgeon on April 6th. After doing more internet research, which the doctor encouraged me to do after our first appointment, I was overwhelmed! Explained my fear of having to decide right now and that I have lots of additional questions, but I really need to get this tumor out. He put my mind at ease by reassuring me that I don't have to decide right now. He also had a patient call me who completed the DIEP procedure and she gave me a hard look at what to expect. Not sugar coated, but very matter of fact. We talked for over half an hour and she explained how she came to her decision. A lot of her choices and reasoning are similar to mine. She was a great resource and it made me feel better about proceeding with using my own tissue to reconstruct my breast.

Yesterday, April 12th, was pre-op with plastic surgeon. This was a great time to address my questions in more detail. With mom present, we went over my options and I am feeling much more comfortable about the DIEP flap procedure. It is more natural, my body is being used to heal my body. My breasts will still be made up of fat and tissue, implants have to be replaced every 10-15 years, there is the risk of leakage, breakage and other issues. The good news is that I still have a choice, all the way up until I decide to start the reconstruction, which makes me feel much better about not having to rush this decision.

Tomorrow is the appointment with the cancer surgeon. I sit here watching the Giants and Dodgers game writing this blog, realizing that this time next week I will be short one breast....Not so sure how I feel about that. Sure I realize how very lucky I am to have my life, but losing this part of me is something I haven't really had time to think about. I worry about the 2 weeks of down time when there is nothing to do but lay at home thinking....that is gonna be the hard part.....

7. Plastic Surgeon Visit

Went up to UC Davis plastic surgery clinic today (4/5/11) to meet with a surgeon to talk about mastectomy options. I was a little keyed up due to the minor car accident earlier in the day....well minor in that no one was hurt, but major because my car is wrecked...AGAIN and I won't have it for 2-3 weeks! Blood pressure was a little high, but that was due to the adrenaline in my body.

Mom and I managed to make it to the clinic on time. After spending over an hour with the doctor, it seems there are a couple of things to decide when it comes to having a mastectomy. Using implants or have an "autologous" procedure that uses my own tissue.

As it stands now I have 3 options, all of which include a sentinel node biopsy:
1) Lumpectomy with Radiation,
2) Mastectomy with no radiation and reconstruction with implants
3) Mastectomy with no radiation and reconstruction with autologous tissue.
If the biopsy shows cancer in the nodes, then radiation and chemo are on the table for discussion in all 3 scenarios.

Here are my thoughts on the various options:

1) Radiation is poison and I am not crazy about that idea. Don't want my tissues burnt to kill cancer cells, don't want my bones and heart and other organs to go through that if there are other options, which there are.  High levels of radiation are just not good for you. I want to avoid this if at all possible.

2) Implants have risks of leakage or rupture which can be problematic. Silicone implants are either not used anymore, or just not by this doctor. He talked about Saline implants, which sounded doable until I found out about this other option...

3) Using my own (autologous) tissue  to build a new breast? Really? I had heard of it but didn't know much about it until today. It is called a DIEP Free Flap procedure and would involve taking stomach tissues (skin, fat and blood vessels) and 'transplanting them' (my words) to make the new breast. There are other forms of 'Flap' procedures, but DIEP does not involve the stomach muscles, as some other 'Flap' procedures do. This DIEP procedure is MAJOR surgery! It is done with microsurgery that takes approximately 6 hours and can be done immediately following mastectomy or can be delayed until a later time for a variety of reasons. It involves being hospitalized for 5-6 days so they can monitor you in ICU for 4 days for observation. All of the tiny blood vessels have to be detached from the stomach and reattached at the breast. A very specialized procedure. Although they do not involve any of the abdominal muscles, it is still a major surgery that will make the stomach sore for up to a couple of months. Recovering to the point of working takes a good couple of weeks, but that may be for people who get to collect disability and don't have flexibility to return to work. I am self-employed and have to work to get paid, so I hope to be able to work from home within a week.

Decisions, Decisions!!

I know someone who did a 'Flap' procedure and has had nothing but complications from it. Though hers was not a DIEP Flap procedure, she discourages people from seeking autologous treatment, the kind that uses your own tissue. I plan to follow up with her to find out what exactly the problems were, because the first time we talked about it, I really didn't understand it. Now I have a better idea of what she went through. I am curious to know what she would have done differently given here experience. I am also seeking referrals from the plastic surgeon that I can contact about their experience.

Time is of the essence and I am at 7 weeks since diagnosis and getting the tumor out within 6 weeks is highly recommended. I don't want to rush to judgement, but I have to make a decision and move on with the best solution for me. There is no 'one size fits all'  answer for this kind of treatment.

As I pondered this decision today, I realized the importance of get something scheduled ASAP since time is marching on. At this point I am thinking of using tissue from my own body. The two surgeons, the one who does the mastectomy and the plastic surgeon who does reconstruction need to coordinate their schedules which has proven to be very difficult!

Late in the day I found out that doing immediate reconstruction, where you actually wake up with a new breast, is not an option until end of MAY! That is too long to wait - it would be over 3 months since diagnosis and I don't want to risk the tumor growing or spreading, so it looks like I will have to do the mastectomy first, have a tissue expander put in that will allow for reconstruction to be done at a later date, approximately 1-2 months after the mastectomy.

A very tough decision to make. Given that time is now working against me, I scheduled the mastectomy for Thursday, April 20th, 2011, knowing that I will have to go back again for the reconstruction. So far, given the information that I have found, I am thinking the DIEP procedure is my best bet. This way the tumor is out and if I choose to have implants done instead, I can still change my mind. But I really like the idea of using my own tissue, not a foreign substance. But then again I just don't know. Just when I think I have it all figured out........

5. Quest for a second second opinion

(Opps, meant to publish this a while ago)

After coming home from the conference and spending a couple of nights online, I decided it would be a VERY good idea to go to UC San Francisco and see what new procedures may be of interest to me. I submitted a request online for an appointment and received a call today telling me the next available appointment is nearly 5 weeks away on April 12th!! That is a long way out!

Explained to UCSF that I am interested in alternative methods, but if it was something I could have done in town, I likely would. Hopefully that will help so they don't have to try to work me into their surgical schedule. Unfortunately the cancer center is very busy, which is very sad. They are going to try to get me in sooner, either by way of a cancellation or a waiting list they have.

UC Davis had not returned my call as of today, 3/9/11, so I called them and got scheduled for March 24th, pending any cancellations, but I have to call every day to inquire about them.

So as it stands I have two second opinions, one at UC Davis on 3/24/11and UCSF on 4/12/11 if not sooner! I hope for sooner. Going to have to call and push back the Apr 1st scheduled surgical appt.