Today's Appointment with the Plastic Surgeon

At 8 this morning, Liza drove me to Chapel Hill for my 9:15 doctor's appointment. Unfortunately, we didn't get to see the doctor until after noon! He was extremely backed up. We finally got home at 2pm and I went right to sleep. I was EXHAUSTED!

The good news... They removed the last drainage tube. Yay! It was very uncomfortable and the "eraser shaped" incision where the tube came out was irritated.

As for the main (mastectomy) stitches, the slight necrosis (cell death) that I had along this line is looking better. I must admit, this did concern me. I really didn't want to have another surgery to remove this skin and perhaps, lose the implant!

Dr. Halvorson said that the lumpiness around my implants should smooth out with time as the skin continues to stretch. And, it will take up to three months for my implants to "drop". (They are pretty high right now.) Overall, Dr. Halvorson says that I look good.

I do have some increased bleeding along the incision on my right breast. He said the incision is an open wound. So, in addition to putting ointment on the incision, he told me to avoid increasing my blood pressure. He wants me to move but, for example, when I'm walking, I should walk slowly. I shouldn't pick anything up that weighs more than 5 pounds, etc. It is VERY tough to have others do things for me. But, I want the best results possible so I will work hard at not working! =)

I slept until 5pm so I'm behind with my physical therapy for the day. It's amazing how fast the day can go! As soon as I submit this post, I'll do another set...

Three Appointments in Chapel Hill

Yesterday was an extremely busy day for me. I had three appointments in Chapel Hill... with the first at 9:30am. I met with the radiation oncologist, the general surgeon and the plastic surgeon.

The pathology report came back and confirmed my last MRI report. There was no evidence of malignancy in my breast or lymph nodes. Although no invasive carcinoma was identified, they did find two very small "residual foci of ductal carcinoma in situ (DCIS), grade 2, solid pattern with focal involvement of the lobules (adjacent to clip within upper outer quadrant, and within lower outer quadrant)". This means that there were two small areas where pre-cancerous cells were found. But, other than that, I was cancer free going into the surgery. But, it was good to get the DCIS out since it really was a matter of time before that would become invasive.

The plastic surgeon says that I look good. I have a little necrosis (cell death) near the surgical scar area. As long as it doesn't worsen, I shouldn't have to have another surgery to remove it. (That would be the worst case scenario. It looks pretty good, though.) I see the plastic surgeon again on Monday.

The best part about yesterday was that I got to have three of my four drainage tubes removed. What a difference it makes. I can't wait to be free of the last one but I know that it could be a while.

Recovery from surgery has been harder than I thought it would be. My left side and arm mobility hasn't been that bad. However, my right arm is a different story! Since they removed the lymph nodes under my right arm, I have much more pain and can't raise my right arm much. (Typing this update is very difficult even with the keyboard on my lap! When possible, I'm typing most letters with my left hand.)

I have slept and slept and slept. My sister, Liza, arrived last night and I wish I could be awake more hours to visit with her. But, since she traveled from Paris, it's not so bad since she is jet lagging anyway! =)

My mom is making sure that Liza knows of all the physical therapy exercises that I have to do five times a day. She has also learned how to empty and measure my last drain tube and is great with getting me my medicines on schedule.

Thanks for the cards and flowers and food... We really appreciate the love!

The First Days of Recovery...

I stayed both Thursday & Friday nights in the hospital. I don't know why I was ever told I may be released after just one night. I had a lot more done than the normal patient gets done during breast surgery. While I was there, I learned that the plastic surgeon said it would be two to three nights for what I had done.

Since I had the lymph nodes removed from under my right arm, I'm still having trouble moving my right arm without pain. But, my mom has been making sure I do the physical therapy and breathing exercises to aid my recovery. It is a little frustrating to have limited mobility. But, I have to remember that I will get everything back but I have to be patient! (I'm not always so patient... so, I guess, I'm working on that skill set.)

I can't wait until I can get the drainage tubes removed. I have four tubes (two tubes on my left and two on my right) that literally come out of my body! The fluid they collect has to be emptied and measured during the day. The bulbs have to be clipped onto my clothes so they don't pull on the incisions they exit. The incision area is pretty sore. In addition, they make taking a shower especially difficult! I hope I can get these removed soon.

I've been spending most of my days in bed. I've got appointments tomorrow, Wednesday and on the 22nd in Chapel Hill. It will be good to get out!

Surgery is a Success

Three hours into the surgery, at 10:30, Dr. Demore finished her part of the surgery. She told Doug and my mom that the mastectomy was complete and the surgery was going very well and that Dr. Halvorson had already completed reconstruction on the right breast. Two hours later, around 12:30, Dr. Halvorson told Doug and mom that I was able to have the immediate reconstruction with two 600cc silicone implants. He said that he believed he was able to achieve a very good result. He said I would be sore and that there would be tightness in my chest from the implants, but that it should go away after a day or two. I felt rather sick coming off the anesthesia and needed additional nausea medication. I was placed in the recovery room after surgery for over 5 hours, until I could get a private room. I was allowed a visitor once an hour for five minutes at a time, however, that didn't work out as planned. I was there a very long time and Doug and mom were only able to visit once each for 5 minutes. That was the most frustrating part. Finally, by 6pm, I got my private room (#6236 Memorial Hospital), with two recliners for mom and Doug and my pillow from home. The pillow from home is most wonderful.

I can't see the results of the surgery as I have bandages. There is a lot of pain, especially on my right side where the lymph nodes were removed. They even had to change my pain medication to something stronger than morphine. I can't remember the name...probably because I'm on it.

I'm very happy that now I can drink something because I was extremely thirsty and haven't had anything to eat or drink since last night at dinner. My throat is still scratchy from the intubation.

Thanks to all of you for your prayers and good wishes. On with recovery!

Surgery is in 9 hours, 30 minutes

I can't believe that my surgery is already tomorrow. I'm OK if I don't think about it. But, time is marching forward. The kids are at the Bradford's and our bags are packed for Chapel Hill. Soon, the alarms will be set for 4:30am. We have to be in Chapel Hill by 6am. Ugh.

Surgery starts at 7:30am. I'll be at North Carolina Memorial Hospital. Please pray for my doctors, Dr. Demore & Dr. Halvorson, my family and for me tomorrow. I'm scared but I'll get through this...

Thanks to everyone for the cards, the Love Book, the surprise lunch today at work, the emails, texts, calls and prayers. They mean the world to me. Thank you!

I know you all need an update. So, I'm just going to copy and paste what I just wrote to a friend:

Regarding my decision, no doctor (not even my oncologist) thinks I should go without a mastectomy. The cancer I have (had?) is extremely aggressive and they don't want to miss one cell. There is no way to be 100% sure that all of the cancer is gone. Per my oncologist, if something were left, it could mutate and the drugs that work now may not work in the future. Since there aren't many drugs that I can use with the type of cancer I have this would be risky. What if Herceptin, which is extremely effective now, no longer worked for me? I'm really afraid of surgery and recovery so I was hoping for different news... ugh! I was so happy after the MRI and now I feel like I've been hit in the stomach. I'm going to Chapel Hill today and will have more docs telling me the same, I'm sure. I definitely hate cancer.

I'm sorry I didn't respond to calls yesterday... I just couldn't. My emotions have gotten the best of me. But, know that I appreciate all of the continued love and support! I really do. And, even though I'm down right now, I'll get through it.

From the bottom of my heart, thank you! =)

Decisions....

On Friday, I learned that the mammogram still showed calcifications. (Calcifications are dead cells that have calcified and indicate that cancer could be in the area. However, I'm not sure how these calcified dead cells would ever go away with chemo... They are dead.)

This morning, while I was waiting to have my echocardiogram to check the condition of my heart, I wrote the following email to my surgeon:

Hi, again. I got my mammogram on Friday. And, I still have calcifications. However, I want to understand if calcifications ever disapear? They are dead cells that calcified, right? They were an indicator to check for cancer cells. We can't be sure from the mammogram that I still have cancer cells that the MRI isn't showing. Is that correct? Can we tell if I have new calcifications?

When you discuss my case, I not only hope to hear your recommendation but am also interested in learning what you think my future treatment should be if I choose to not have a mastectomy. I'm curious in what treatment could entail. Furthermore, is there evidence that when cancer comes back that it is more likely to be more aggressive? What are my chances that it will come back without a mastectomy? What are my chances of it coming back with a mastectomy?

If I have a mastectomy now, do you still believe I should lose my nipple? What are the pros and cons of nipple saving?

I just want to undestand and weigh my options as well as hear the team's recommendation. I'm finding myself extremely confused again. Thanks for your help.

Thank you!
Lara

My surgeon responded with the following:

It is important to realize that only 1/3 of patients who have a complete clinical response actually have a complete pathologic response. Calcifications usually do not disappear and are an indicator of disease. That is why when I first met you I had said that I did not think that you would ever be a breast conservation candidate. When a patient starts out with diffuse calicifications they hardly ever go away, and it is important to remove all signs of disease. There is no way of knowing until we get the pathology report whether the tumor was killed by the chemotherapy, but the recommended treatment is to remove all signs of the tumor. I definitely do not recommend a nipple sparing mastectomy, that is experimental and only being considered in patients with very small tumors far away from the nipple, definitely not for someone with a locally advanced breast cancer. I will sit down with you on Wednesday and we can go through all of the recurance rates. See you then.

I've got so much to consider and decide... I'll report more after my appointment on Wednesday. Please pray that I make the right decisions!

DCIS....

I sent the General Surgeon, Dr. Demore, an email to let her know that the MRI results were available.

Dr. Demore responded with the following:

Hi Lara,
That's a great report. Your films will be reviewed in conference before I see you next week. I just want to clarify to see if you are still planning on a mastectomy, reviewing my note I mentioned I did not think you would be a breast conservation candidate because of the extensive calcifications. Calcifications are not seen on MRI, so if you are not considering mastectomy then we will need to get a mammogram to access the degree of calcifications, which usually don't go away with chemo.
Thanks,
Nancy

I told her that I was interested in exploring any new options available to me. I also wanted more information about the calcifications. She said that calcifications don't show up on MRI's. They show up on mammograms.:

"Just to clarify, MRIs show enhancement (blood flow) which can represent DCIS, but that is not the same as the area of calcifications on mammogram (which also represent DCIS). The blood flow (enhancement) may have gone but the calcifications usually don't change with chemo. Let's go ahead and add a mammogram and see what it shows."

They are scheduling a mammogram for Friday, Jan 22 in Chapel Hill at 10:30am. I'm both nervous and excited to learn the results. I'm praying those calcifications have melted away!!

I found the following information on DCIS on www.dcis.info :

Ductal carcinoma in situ (DCIS)

Although breast cancer has been a human illness for thousands of years, ductal carcinoma in situ or DCIS (also known as intraductal carcinoma) is a relatively new diagnosis. We are learning more about it all the time. Until mammography became a routine part of medical care, we didn't see much DCIS. Now, we do. Approximately 24% of all new breast cancers diagnosed in the United States are DCIS, with one case of DCIS detected per 1300 screening mammograms in North America.

Most breast cancers (carcinomas) arise in cells that line the ducts and lobules of the breast. We still don't know what happens exactly, but for some reason the cells start growing when they are not supposed to be growing. When cells in the lining of breast ducts are growing inappropriately, this is called hyperplasia; when they grow inappropriately and do not appear normal under the microscope, they are called atypical.

DCIS is a term used to describe cells that are growing inappropriately inside the ducts of the breast (see diagram) and look like cancer cells under the microscope. These abnormal cells have not spread into the surrounding fatty breast tissue or to any other part of the body. They are totally confined to the duct.

Some cell changes are important, while others are less important. DCIS cells lack the biological capacity to metastasize, or spread elsewhere in the body, like cancer cells do. So why do DCIS cells fall into the category of cancer cells?

Some DCIS cells can change genetically and become true cancers, and women should not be lulled into thinking that a DCIS diagnosis can be ignored or dismissed. We still do not know for sure which DCIS cells will change and become invasive and which will remain DCIS. It is probably most useful to view a diagnosis of DCIS as an indication that a woman has a greater risk of developing breast cancer, especially if she receives no treatment for the DCIS.

Data suggests that ductal carcinoma in situ represents a stage in the development of breast cancer in which most of the changes that characterize invasive breast cancer are already present.

There are different kinds of DCIS. It is important for the individual who is diagnosed with DCIS to know how aggressive or risky her cell type is. For example, comedo is considered more aggressive (high-grade) than cribiform (low-grade). This information is part of an accurate diagnosis by the pathologist, and helps define treatment options, which in turn affects whether DCIS becomes invasive breast cancer.

A diagnosis of DCIS depends on the pathologist, and the diagnosis may be controversial. Therefore, second opinions may be important. If a woman seeks a second opinion, she needs to take her tissue slides and tissue blocks that contain samples of the cells taken during her biopsy to another pathologist, and she must be prepared to pay for this additional opinion.

People often fail to get a second opinion for pathology. However, if the pathology is incorrect, the treatment choices are much more likely to be incorrect and possibly ineffective as well.

You can also request second opinions for mammography, ultrasound, and treatment. If you choose to have a second opinion for mammography or ultrasound, it is important to take the original films, not copies, to the physician, and to carry them to the radiologist yourself if possible.

Whether your doctor refers to DCIS as cancer or pre-cancer, it requires careful treatment and follow-up to avoid the possibility of an invasive breast cancer developing.

In this web site, we refer to DCIS as a cancer.

I found the following info on another website:

DCIS or intraductal cancer is considered a direct precursor of invasive breast cancer. The constituents of DCIS (the individual DCIS cells) are clearly cancerous and exhibit the same cytologic features, receptor status, and genomic deletion and expression profiles as their invasive sequela. However, as long as the lesion remains within the milk duct, it has no access to blood vessels or lymphatic channels, meaning it cannot metastasize through these routes. Accordingly, this stage of disease can be considered a benign condition because it does not infiltrate or destruct adjacent tissue or cause metastases; therefore, it is consistently curable with only local treatment (surgical excision with or without radiation therapy).

DCIS is a heterogeneous disease: High-grade DCIS lesions exhibit fast growth rates, high mitotic indexes, and after a relatively short intraductal period, these lesions will almost always progress to high-grade invasive cancer.

What a day!

Last night, I had a 7pm (yes, PM!) MRI appointment. After they did the scans, I asked to see what the scans looked like. They showed me how the MRI slices and dices images of my body. I, personally, couldn't see a difference between my right (cancerous) and left (non-cancerous) breast. But, I really didn't know what I was looking at. I had a dream that the report would come back with clean results.

So, today I had chemo and was practically begging for the MRI report. Dr. Rubin is out of the office until Monday and I couldn't wait that long. (They are MY pictures, aren't they?)

The clinical trial coordinator, Cindy Shaw, went to bat for me. When she found out the report was available, she talked to the Physicians Assistant and they agreed that I could have a copy...

The results were GREAT!!!

Here are some snippets from the report. They compared the findings from last night to the two other MRIs on file:

Comparison: 9/25/09 and 6/10/09.

Findings: No residual background parenchymal enhancement in either breast. The previously seen 1.8 x 1.7 x 1.5 cm mildly irregular, rounded, enhancing mass deep in the upper outer quadrant of the right breast is no longer seen. The previously seen large area of patchy enhancement occupying the majority of the lower outer quadrant of the right breast is no longer seen. No masses or areas of enhancement suspicious for malignancy are seen in either breast. No abnormal appearing lymph nodes are demonstrated.

Impression: Complete imaging resolution of the previously demonstrated right breast invasive ductal carcinoma and ductal carcinoma in situ. No imaging evidence of malignancy in either breast at this time.

Bi-Rads Category 6: Known biopsy - proven malignancy - appropriate action should be taken.

I don't know if this will give me some better options surgically or not. (Cindy Shaw did say that tissue studied after surgery can sometimes show small tumors that didn't show up on the MRI.) But, I do know that this is FANTASTIC news. I'm elated!!! Miracles do happen!

Keep praying for me... Those prayers are working!!

Love to you all. =)

I have confused some people!

In my last post, I said I was almost finished with chemotherapy drugs... And, this is true. However, there is some confusion... This doesn't mean I won't continue to sit in a chemo chair...

HERCEPTIN isn't officially a chemo drug. It's a targeted therapy drug. Unfortunately, it still has to be administered the same way as chemo... I have to have HERCEPTIN for a full year after starting it. So, I will continue going to the chemo room until the end of SEPTEMBER 2010.

So, tomorrow, I will have my last dose of TAXOL (the stuff that causes the tingles). I'm super happy about that. But, I will continue getting Herceptin EVERY WEEK until surgery and then once EVERY THREE WEEKS after surgery. That's not so bad! I will be able to leave Greensboro for an entire week if I want... (That's truly exciting because planning a vacation around my Tuesday appointments is tough... Right now, we are looking at going to Mexico to celebrate our 40th birthdays before my surgery. But, that means we can't leave until Wed, Feb 3rd and have to come back Monday, Feb 8th. Oh well!)

Hopefully, I'll be done with all of this by October!! I can't wait!! =)