Decision made

I just got off the phone with my surgeon and told her that I wanted a bilateral mastectomy with a sentinel node biopsy on the right side. A sentinel node biopsy will sample a couple lymph nodes on the right side to make sure that there is no cancer there. The chances that there is any cancer there is VERY slim, since they don't "think" there is cancer on the right side. All of the lymph nodes on the left will come out, since we know there is cancer there.

As I mentioned in my earlier post, there were a lot of factors to consider. I also surveyed as many breast cancer patients and survivors as I could. I did not hear of anyone who had a bilateral mastectomy and regretted it. However, I did hear stories of women who had less invasive surgery and later did regret it. Either because they felt "lopsided" or because the cancer came back on the other side. It required them to either live with the issue (at best), or have more surgery to go back and remove the breast.

For me, a big part of the decision is peace of mind. I am a warrior. I am going to stand up and fight this invasion with overwhelming force. I'm taking away its battleground. Taking the rug right out from underneath it. Game over. (I hope). I'm 40 years old. I have a lot of years ahead of me that it could come back in. I don't want to always worry that it would come back. I now have a 95% risk reduction of developing it on the right side. If it comes back, I'll fight it again. But I want to do everything I can today to fight the definitive fight.

It is going to be very strange to lose body parts. I'm not sure how I'm going to feel about losing my breasts. I don't really have a choice for the left side, there are just too many tumors in there. For the reasons mentioned above, I want to deal with both at the same time. Its just going to be very strange to be so flat after 25+ years. And just dealing with the realities of surgery. The incisions, the drains, the pain, the recovery. The down time. That is going to be hard for me to be incapacitated.

They do give you prosthetics that will slip into a camisole. I've seen some survivors refer to them as "foobs." They the shoulders and balance. After you have recovered from surgery, you can get more sophisticated "foobies." Some are even waterproof! Who knew?

I don't know right now if I will choose reconstruction are not. There are lots of options there-some that even give you the added bonus of a tummy tuck. I'm not a candidate for immediate reconstruction. Depending on the size of the tumor, I may need radiation after chemo. I'm glad that isn't a decision that I need to make right now anyway.

The next step is to schedule surgery. I should be able to do that tomorrow. My surgeon told me that my case has the highest priority. The timing is all in God's hands. Of course, now that the decision is made, I want it to happen as soon as possible. Get that cancer the heck out of my body. God will work it out so that all of the balls that are up in the air, (Eric's trip, my menstrual cycle-I don't want to be having my period while recovering from surgery, my soon to be arriving nieces/nephews, kids' birthdays, etc.) will come down in exactly the right place.

Single or Double??

I have a decision to make.

I've decided that what I know about the left breast means that it must go. No lumpectomy for me. There is just too much going on tumor wise on the left side for me to feel like we would be getting all the cancer with a lumpectomy. I'll also lose all my lymph nodes on the left side.

My decision now is....do I have the right breast taken off as well as a protective measure?

Things that weigh against a bilateral (double) mastectomy:

• The MRI did not show any irregular things going on in that side.
• More difficult recovery from surgery on both sides.
• Removal of healthy tissue...is that overkill? I've never been one for overuse of medical technology.
• The oncologist said there was a 1 in 20 chance of developing cancer on the right side. He thinks those are good odds. (I'm not so sure).
• With my history of breast cancer, I'll always be monitored very closely if I keep my right breast. Any cancer should be caught at a much earlier stage and not be as invasive as what I have now. (At least that is the theory).

Things that weigh in favor of a bilateral:

• My surgeon told me there would be a 95% chance that the there would never be cancer on that side with no breast. Less of a chance of re-occurrence is a big thing. I don't want to fight this battle again in the future. Is peace of mind is worth losing a breast?
• I wouldn't be "lopsided." Having one breast would mean I would have to always wear a prosthesis or look really lopsided.
• With reconstruction, if I chose it in the future, would probably be easier to achieve symmetry.
• I'm most likely done having children, so I don't need them for nursing babies. If chemo doesn't throw me into an early menopause, my oncologist suggested that may be something we force to decrease the chances of re-occurrence. My breasts have fulfilled their primary purpose, so to speak.

I've been soliciting the opinions of other women with breast cancer to see what factored into their decisions. Right now, the majority of women have chosen bilateral and do not regret it. A few had "clean" MRIs and the surgical pathology later showed funky cells on the "healthy" side. So MRI's aren't always the best indicator, apparently. There have been a few who chose one side and wish they had done both. There are also a few who are satisfied with their decision to just have one removed.

Like everyone has told me, it is a very personal decision. Right now, I think I'm leaning towards bilateral. That list of pros seems to outweigh the cons. I welcome other gentle opinions. In the end, its something that only I can decide. But if there is something that I haven't considered, I would love to know. I also need to pray about it more.

So...prayer requests:

1. As this post shows, I need clarity and wisdom in my decision making on whether to have a single or bilateral mastectomy.
2. That I could get a surgery date as soon as possible. The surgeon indicated it could take 2 weeks. I would love to have it earlier. It is freaky knowing that you've got cancerous tumors and cells dividing inside of your body. Or even possibly circulating through your blood stream. Jean-Marc's 2nd birthday is July 10th. I would like to be somewhat conscious of what is going on around me by then.
3. That while I wait for surgery, the cancer does not spread.
4. For my family. For strength for them to be able to handle what is ahead. Eric hasn't been sleeping well, and I think he is stressed out about picking up some of my slack with the kids and the house and keeping up on his work commitments. My parents also have a lot on their plates with Jared in Iraq, my sister and brother both expecting babies in the next week. The kids are also going to need to step up a bit around the house and pick up after themselves. I pray that they can do it without being hounded.

I should be able to get a surgery date tomorrow sometime. I'll post with an update then.

God bless you all!

Meeting Dr. P

I had my long awaited oncology consultation yesterday.

Eric went with me. Him being in the drug discovery field and knowing many researchers (including cancer specialists) has been a great blessing. He had several pages of notes on research that he had done to get ready for the meeting. I just wanted it to start. As I waited, I played with an app on my iPhone called "Bible Shaker." You choose a category, push a button, and then an appropriate verse pops up. So I chose the topic "Fear" and started pushing the button. There was one really cool one and for the life of me right now I can't find it or remember exactly what it said. But it did say "You will not die." Thank you Lord.

The door opened and Dr. P came in and sat down. He was a quiet man who sat hunched over on the stool and looked at us over the top of his glasses. As we had our conversation, he reminded me of some of the scientists that I've met that have worked with Eric in the past. Quiet, but smart.

Had the results from this week's MRI (an answer to prayer). The MRI showed 3 tumors on the left breast that were fairly close together. That explains the strange feel that it has--it seemed huge. Now I know that it is 3, not one big one. There was a suspicious area at 6 o'clock as well, which may or may not be cancerous. If I was interested in trying to save the breast, it would need to be biopsied. If it was cancerous, a lumpectomy would not be an option. I had already decided that a mastectomy would probably be the way to go, and this sealed it. I don't want to have another biopsy and wait another week for results.

We discussed whether to do chemo first or surgery first. Chemo first would tell us if my cancer was responsive to chemo--apparently not all are. When they do surgery first, they remove the known cancer and then blast you with chemo to kill any cancer cells that may be wandering in the system. They don't know for sure that they are, its kind of a prophylactic measure. If it was responsive to chemo, the tumors should shrink. Frankly, knowing that there was something suspicious in there that we couldn't even feel yet makes me want to just move ahead with surgery STAT.

I brought up the question of a bilateral mastectomy. He did not think it was necessary. There is no evidence of cancer on the right side and I've had the best diagnostic tests done. With my history, I will be monitored very closely for the rest of my life. If cancer does develop, it will be caught early...hopefully stage 0. But still. I want to fight this right now once and for all. Do it right the first time. Knock it out with overwhelming force. He said the chances of it moving to the right after treatment were like 1 in 20. He thoughout t hose were small odds. I don't know. It seems pretty high to me. There is also the question of symmetry. I'll be given a prosthetic breast to wear during treatment and until I do reconstruction. (If I do reconstruction). I wonder if I'll be lopsided if I only have a single? The wig lady earlier this week regretted not having both taken off for that exact reason. Any thoughts you fellow pink ribbon clubbers have out there would be welcome. I was awake for part of the night pondering this question.

There is also going to be the option of participating in a clinical trial. If I choose to participate, I would have to do the chemo down at Zion rather than in San Marcos. They would randomly assign me to one of three groups. Each group gets a different chemo cocktail. I want my experience to help others, but I'm not sure about the trial. I also want to be treated with what is known to work. There's time to decide.

He also did a breast exam. He checked the lymph nodes in my neck. All clear. Whew. He checked the left side and felt the tumors we already knew about.

Througout the exam, Eric was quizzing him on various drugs and trials. As he helped me sit up after the breast exam, they started chatting about Eric's line of work, various uses for drugs on different types of cancer. I'm standing there in a hospital gown, just wanting to get dressed, and these to science guys are yakking! It was funny in a way. They could definitely communicate on a different level that I could.

Is Dr. P "the one?" I suppose so. I'm not really that particular about his personality as long as he is a good doctor and knows what he is doing. On a personal level, he got warmer as we went through the meeting. I get a sense that he really knows his drugs. Eric quizzed him pretty good. He made me feel like I had a good prognosis, even though he won't know the extent of the cancer until after surgery. He referred to women with "much more advanced" breast cancer. Funny how knowing there are others out there worse off than you can be a comfort.

It looks like I'll start chemo in early August. I should have the surgery within 2 weeks. I'll find out more specifically on Monday. That is an area for prayer. I want this cancer cut out as soon as possible. 2 weeks will be an eternity. I also ask for more clarity as I decide between a bilateral or single mastectomy. Thank you all, once again for being prayer warriors on my behalf. It is working!