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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Wednesday, August 12, 2009

Cancer Sucks

We made our long journey back from Houston today. Although we enjoy going down and visiting with Jesse's sister and her family, it was nice to be home. While I was down there I received a lot of information. Much of the information was information I needed to hear, yet really didn't want to hear. However, I think in the end it will help me to make more informed decisions. Below is a synopsis of what all was done while I was there,and what information which was obtained.


Mammogram and Ultrasound

I found out that MD Anderson's mammograms are much less painful than those I've had here at Diagnostic Health. At Diagnostic Health the mammograms I had were an 8 on a pain scale of 1-10. They would contort me and put so much pressure on my breasts that I was literally crying out in pain begging them to hurry. At MD Anderson the mammogram was a 5 on the same scale. At no point was so I so miserable that I couldn't handle it. I was very relieved about this.

While I was having the ultrasound, a radiologist who reads the ultrasounds came in to inspect the images the technician had obtained. We chatted a bit and I told him that I was on chemo and they had said my tumor had shrunk considerably after only 4 treatments. I asked him if he would compare the measurements of the ultrasound with a previous one I'd had at Diagnostic Health in May. He measured the tumor on the screen and went and looked to see what it had been previously and found that there was no difference in size. I questioned this because I could actually feel a physical difference myself. He explained that often there was inflammed soft tissue surrounding a tumor that may have gone away. He said that the method my oncologist was using to gauge the effectiveness of the chemo (measuring it physically using a ruler type gauge) was outdated, archaic, and inaccurate. I was a bit angry with my oncologist at this point for giving me false hope. Although I want to hear hopeful things, I'd much rather hear the truth, so that I'm not dissapointed later. Before we left MD Anderson, I obtained a copy of the Ultrasound and the report and I plan to address this with my oncologist.

It's frustrating to have to go back and educate the doctor who is supposed to be in charge of my care. If I hadn't gone down to MD Anderson and consulted with an oncologist there, I might at this point be very worried about my chemo regimine. However, the oncologist here is following the same chemo regimine I would have received at MD Anderson (with the except of Epirubicin rather than Adriamycin which the oncologist at MD Anderson told me was often substituted and had similar results and effectiveness). So for now, I will educate her on measuring the effectiveness more accurately, and continue my chemo here.


Breast Surgeon Consult
Radiation Oncologist Consult
Breast Reconstruction Consult

Tuesday morning we met with Dr. Feig for a breast surgery consultation. After examination, his first suggestion was breast conservation surgery (lumpectomy). I told him my concerns about lack of screening post surgery, and he seemed to accept that. At this point I was still pretty much decided on bilateral skin sparing mastectomy. The next thing he brought to my attention was definitely something I had not been told before. He said that it appeared that the skin above my tumor (which is very close to the skin surface) appeared to be affected by the cancer. He recommended removal of the skin there. This would create an additional scar, as well as leaving less skin for a reconstruction surgeon to work with. It was fairly dissapointing to hear that I was looking at yet another nasty scar.

The next consultation was with Radiation Oncologist Julia Oh. I had not seen a Radiation Oncologist before, and hoped to find out what my odds of having to have radiation post surgery were. There were many reasons I wanted to know this prior to surgery, but the main one was that radiation effects the outcome of reconstruction. I did not want to have a surgery with immediate reconstruction just to have it messed up by the radiation a few weeks later.

What I had been told by the breast surgeon here who diagnosed me, was the rule of thumb on radiation was if you have a lumpectomy, you receive radiation no matter what. And, that if you have a mastectomy and 4 or more nodes came back positive after surgery, you might also receive radiation. That information was incomplete. The truth is, there are multiple situations where radiation can offer a significant increase in survival rates such as large tumors > 5 cm, 4 or more positive nodes, and the what they called the grey area. The grey area is of course me. You have to have a combination of factors to meet the criteria for the grey area. Some of the factors are: diagnosed at young age (me), 1-3 positive nodes (I have at least 1, possibly 3-4), and lymphatic vessel involvement (me). She said that radiation would probably increase my chance of survival as much as 20%. I questioned this, considering I thought that my current chance of survival with surgery and chemo was already 84%, and she told me that actually my young age and axillary node involvement actually put me about 60% with surgery and chemo. The radiation would give me back that 20% I thought I already had, bringing my chance of survival back up the 80% that I was more comfortable with. This is when I decided I was going to take her advise, and have radiation no matter how many nodes they found.

At this point I was feeling a little frustrated, but the next consult was going to be the final one and I was doing my best to absorb all this new (and frustrating) information. We made our way to the reconstruction consult. We saw Dr. Selber rather than the reconstruction surgeon we were initially scheduled with, because the breast surgeon had realized they had scheduled me with a surgeon who did not perform the particular type of reconstruction I had interest in. He was really young, younger than me in fact, but seemed to be as knowledgable as the older more experienced, Dr. Duffy here in Dallas. After examination, the first dissapointing thing he told me was that I would not get good cosmetic results if I did my reconstruction at the same time as surgery. This was dissapointing, because I was hoping to get it all done as one surgery and not have to go through multiple recoveries. He said that the radiation would shrink the breast, that would already have less skin than norma,l and that he would recommend I have an expander put in at the time of surgery, have it deflated during radiation and reinflated shortly afterwards to stretch the skin and hold the shape until my body had recovered enough from the radiation to handle the reconstruction surgery.

The next thing he did was tell me I only have two options for reconstruction (due to the fact I do not have enough belly fat for any of the options that pull fat, muscle or skin from the stomach area, I will have less skin left from my skin sparing mastectomy (due to the additional skin needed above the tumor), and the fact I have to have radiation). The two options are SGAP, where they take skin and fat from your upper buttocks/hip area, and lattisimus dorsi flap, where they take skin from your back and insert an implant(not a good option, it leaves a 6 inch scar down the side of your back for each breast).

I was ok with this. After all, the SGAP was the one I came to discuss right? This is where it really went downhill. I found out that I am again in the minority. Typically, breast cancer patients either have belly fat or don't need radiation. Due to this fact, not many SGAP's are performed and most reconstruction surgeons have only done a few in their career. On top of this, the surgery is very long (8 hrs) and very difficult. Each breast would have to be done separately, in an 8 hour long span. After each surgery there would be weeks of recovery time, followed by additional operations to correct any issues. Another surgery would need to follow in the future to create a nipple. If both breasts were done we were looking, at the very minimum, of an additional 6 surgeries that would be required after radiation. This would add an additional year of misery to my cancer treatment. In addition to that I would have to go a large period of time without breasts. This would mean I'd have to deal with prosthesis etc.

At this point I asked him the dreadful question, "So how many SGAP's have you done?"
He humbly replied, "Five. The surgeon with the most experience in SGAP here at MD Anderson has done around twenty. If you want someone with more experience, you will most likely need to go to Louisianna."

At this point I lost it. I'd been doing so good all day, and I was counting on MD Anderson having surgeons skilled in all the possible options. In those two days, I had found out my tumor had not shrunk, my oncologist here was clueless, I had to have an additional scar to remove the skin over the tumor, I had to have radiation, my survival rate was lower than I thought, my reconstruction options were extremely limited, and even the doctors at MD Anderson didn't have much experience with SGAP. This was just too much for one day. It's too much for one lifetime...

Anyhow, now I'm faced with some difficult decisions to make regarding my surgery and reconstruction. Since I know first hand, that all this information is probably creating information overload for you, I will save you the decision debate tonight and write about it tomorrow or one of the days this week. I'm sure I'll be kicking it around enough the next 5 months to remember. Oh, did I mention Cancer Sucks??!?!!


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