It's a date!

OK, things are looking up. I finally have a surgery date - February 12th. Just far enough away to give me some time to plan and prepare, but soon enough to suit me. I wasn't at all comfortable with the idea of putting this surgery off, so I'm glad they found me a date early in my requested window of time. I need to have an EKG done prior to the surgery, which will be simple since I can go to the Kaiser facility next door to the campus where I work to have this done, on a walk-in basis. If I'm up to it, I will go home after surgery (it's outpatient, so I expect to go home the same day); if not, to Mom's until I'm able to be on my own. Primary issues will be pain management and possibly dealing with a post-surgery drain thing which I may or may not need help with (and may not even have - it will depend on how things go on the day of surgery). Then, if things go as planned, I will begin radiation treatments a week or so after surgery. I think I described those briefly in an earlier post, so won't bore you with that again. My spirits remain high and my outlook positive. I had a very helpful session yesterday with my counselor Alisa whom I haven't seen in a couple of years, but we picked up as if no time had passed at all. She thinks I'm doing great, and her only concern is that I allow myself time to grieve as much as I need to. I tend to want to start crying in meetings, or while behind the wheel of my car, or at other inappropriate times. I need to ensure that I allow those squelched feelings to surface and deal with them at more opportune times, so I will henceforth be scheduling time to cry. Imagine! What a world we have created, where we have to schedule grief into our busy calendars. Please don't think that I'm depressed or sad - that is not the case. 98% of the time, I am quite positive and happy. But there are times when the reality of the situation becomes overwhelming to me or scary, as I'm sure you can understand. Anyway, the worst thing is that I will have to miss a quilting class I had scheduled on the evening of February 12th, unless maybe Mom could wheel me in there on a gurney....

Quick update - surgery date

I've learned that the estrogen level at the time of surgery can have an effect on survival rates in premenopausal women, especially when their tumors have tested positive for estrogen and progesterone receptors, which mine has. In light of this, I will be asking for my surgery to be rescheduled to some time later in the month of February. More later....

Long time, no post

I apologize to those of you actually following this blog - it's been a busy week with work and school picking up pace. Here's the scoop: I decided on Monday to move forward with a lumpectomy. I learned yesterday that the surgery is scheduled for Thursday, February 7th. I'm a little disappointed to wait so long, but at the same time I have a lot I want to do to prepare (mentally, physically, and emotionally) for the surgery. My spirits are high - I'm truly feeling very positive about things. I feel extraordinarily lucky and I remind myself of this several times a day. In particular, I am lucky to have the love and support of so many precious friends and family members. I feel your support and I am very, very appreciative of it. Some of the things I am doing to prepare are improving my overall health (through exercise and nutrition - and I've cut out herbal supplements that might have blood thinning properties), reducing stress levels (through biofeedback, breathing exercises, and yoga), and learning as much as I can about the surgery and recovery process and ways to speed healing. If all goes as planned, I will likely begin radiation treatments about 2 weeks after surgery. Radiation has come a long way, but is a bit arduous: 5 days a week for 5-6 weeks. I understand that you are in and out in about a half an hour, and there is a radiology unit nearby in Escondido, so I'll be able to go over during my workday. There may or may not be some fatigue and some skin damage ("tanning") from the treatment. The radiation is directed in such a way that it does not damage any underlying tissues or organs, so I don't need to worry about that aspect. Nonetheless, if I have radiation I will plan to do whatever I can to mitigate its possible effects, expected or otherwise. I will try to do a better job of posting, so you'll know how I'm faring. But know that I am confident in my care providers, confident in myself and my ability to cope with what lies ahead, and confident in your love of support. The most important things I've learned these past few weeks is that I am surrounded by angels, and that I am a lucky, lucky woman!

What a difference a day makes

Something happened yesterday. I don't know for sure what it was, but it has made a big difference for me. I snapped out of a depression I didn't know I was in. I think it was a combination of things. The nurse in the plastic surgeon's office Tuesday night was actually an angel. That's where it started. Then I met two other angels yesterday - one was Kaiser's breast cancer program coordinator and the other was Ann, one of Kaiser's survivor/volunteers. If you're looking for angels, there are apparently a lot of them working for Kaiser Permanente in San Diego.

Anyway, I'm feeling much better about things - less overwhelmed and more confident in my ability to make the decisions I have to make. Breast cancer and its treatment are very complicated. It's great to have so many treatment options, but it's almost too many. At least it seems that way when you've just been told you have cancer.

At any rate, I learned that plastic surgery is no cake walk and the decision to go that route is based on a number of medical and personal issues. Lumpectomy with radiation presents its own issues. And the fact is, until surgery - whatever kind - we won't know the true size of the tumor and how much tissue must be removed, nor will we know whether lymph nodes are involved. And if they are, additional surgery to remove lymph nodes would be required. I wish there were a way to know that ahead of time, but Kaiser will only perform the lymph node biopsy at the time of the lumpectomy/mastecomy operation. Results of the biopsy take up to a week.

In light of this information, I have decided to go to a quilt show tomorrow - the largest show in California - with a couple of close friends. I am leaning toward lumpectomy with radiation, but expect to have a final decision made this weekend. I want to get the surgery/biopsy over with so that I can move on to whatever comes next.

Forgive me if I don't respond right away

I've gotten so many kind and thoughtful e-mails, with encouraging stories, and good advice and resources to look into, and offers to help. I was trying to keep up with them, but I've lost that battle. So this is my message to all of you who have not had a response from me - Thank you! I am reading your messages and I am so grateful to all of you for taking the time and caring enough to send these messages. Please don't stop. But please do forgive me for not responding. I hope you understand, and know that I am taking all of your kindness and helpfulness to heart. It means the world to me and I don't know what I'd do without you.

About BSEs and mammograms

I don't think I've mentioned this yet, but I have had regular mammograms for several years now. My last one was July 2007. It's very likely the tumor was there in July, but the mammogram did not pick it up. The reason for that is that I have very dense breast tissue, which mammograms are not good at imaging. My point here is that - had I been doing regular BSEs, which I had not, I may have discovered this thing much earlier than I did. It has been there for a while. 1.9 cm is about 3/4". (That's the size it appears to be on ultrasound - actual size may be smaller or larger.)

When I went in for the clinical exam (hands on exam by a nurse) on 12/31, I was allowed to feel a model of a breast that had models of tumors in it. The "tumors" were hard and deep. I had never felt one of these before, and I highly recommend that you ask to feel this model next time you have an exam - it's very educational. My own breasts - thanks to the dense fibers - have always felt lumpy and bumpy to me, which made self exam a rather frustrating and discouraging process - which bumps are old/new? which are good/bad? which are me/not me?

Bottom line - please don't put off your BSEs, and please learn to do them properly (see video linked below), and please ask to feel a model and get input on how best to examine your own breasts. If you have any concerns despite a clear mammogram (expecially if you have dense tissue), ask for an ultrasound.

So many women I've talked to recently have admitted they don't examine regularly. All of this is up to you. No one else is going to do this for you.

Okay, I'll stop preaching. For now. Have a happy day! :o)

Good ultrasound news

My ultrasound revealed nothing on the left side - a great relief. I will have a consult with plastic surgery (just in case) tomorrow night. Will have to decide soon about the type of surgery/treatment to have.

This darn cold - since I started on a new antibiotic yesterday, I was hoping for a dramatic improvement today, but that hasn't really happened. I cut out dairy yesterday (almond milk is good, I think - can't really taste anything right now) and drank a hot tomato tea all day (V8, garlic, lemon juice, cayenne, and hot sauce-all you can handle). I think those two things have done as much to provide relief as anything. Symptoms are better today which is a relief, since I haven't been able to breathe for several days. And breathing is kind of important, unless you're a fish. So I may not have a sinus infection, just a bad cold, but since it's my third cold since December 9th, and since I'm prone to developing sinus infections, and since I've already started the antibiotics, I'm going to finish them.

Links to sites explaining breast cancer

In case these are helpful to you and yours:

Especially for kids:
http://www.kidshealth.org/kid/grownup/conditions/breast_cancer.html

An excellent, extremely thorough explanation:
http://www.nationalbreastcancer.org/about-breast-cancer/beyond-the-shock

Another good site:
http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=LRN&dt=5

Monday update

I am scheduled for an ultrasound tomorrow morning, to find out if there's anything on the left side. I've also started the wheels turning on meeting with a plastic surgeon - so far we're exchanging phone calls, but I expect to have an appointment scheduled tomorrow. That is just in case I opt for mastectomy with reconstruction. That option didn't appeal to me at all yesterday, but today it's in the hopper. I also had a nice chat with my GP, who told me she has the utmost faith in the surgical team. She's very candid and objective - she's not a cheerleader for Kaiser. She has been with them for decades and has been both a doctor and an administrator - she's top notch. She has been my doctor since 1989, and was my father's doctor and is still my mother's doctor. She told me that the current diagnosis and treatment recommendation is pretty straightforward, and while she didn't discourage me from pursuing a second opinion, she said that she herself wouldn't bother; things are pretty black and white and the same options would be made available no matter where I went based on my diagnosis. She thought it might just cause added stress, which frankly I don't need. I took her comments to heart, but have not ruled out getting a second opinion. She did suggest that if things become complicated later, it might be advisable. Thing is, we won't know the size or stage of the tumor or extent of invasion until the day of surgery. It's possible that a lumpectomy could be performed, and days later we'd learn that lymph nodes are involved, so that will mean another surgery. So there are some ways it could get complicated. (She also prescribed an antibiotic for what we think is yet another sinus infection; hope it works.)

At this point I know that my cancer is ductal, and it is invasive, which means it has grown out of the duct and into the surrounding tissue. We know that it has tested positive for estrogen and progesterone receptors which is favorable. We don't know yet whether it is positive for HER2 receptors, but will learn that after surgery. We don't know the "stage" - the size, rate of growth, whether cancer cells have infiltrated my lymph nodes, but will learn at least some preliminary information about that on the day of surgery; final test results on the lymph nodes will come a few days later. A couple people have asked about chemotherapy - that might be prescribed once tumor size and lymph node status are known.

I have received such warm and supportive messages from you, and I can't thank you enough. It means the world to me to know that I have the support and good wishes of so many whom I hold dear. Please know that I am very optimistic - ever the Pollyanna, I guess. I know it's going to be fine. Just might take a while.

I know that my news and the shock of reading this blog has been hard on many of you, and I am very sorry for that. I'll post again tomorrow. Take care.

BSE Video

Here is a link to an excellent video on how to properly perform a breast self exam:

http://www.imaginis.com/breasthealth/bse_video.asp

Meeting with surgeon

About two weeks ago I discovered a lump in my right breast (had my last mammogram in July). I was examined by a nurse and scheduled for a special, more thorough kind of mammogram a week later. Turns out I have dense breast tissue which makes it hard to see anything on a mammogram. Something looked suspicious, so they immediately did an ultrasound exam. That exam revealed a worrisome spot, so they immediately did a needle biopsy - removed some tissue to examine. That all happened on Friday, January 4th. On the 9th, I was told that the sample tested positive for cancer, and an appointment was set for me to meet with a surgeon.

This morning, I met with a surgical oncologist at Kaiser to discuss my breast cancer treatment. I have a ductal cancer (grows in a mass without fingerlike projections, which is another type of breast cancer), approx. 1.9 cm. tumor (actual size won't be known until surgery); don't know about lymph node involvement yet (will also be revealed when surgery is done). They will have to do surgery in order to determine whether the cancer has spread to any lymph nodes and to determine its actual size; they would then remove the tumor and some of the surrounding area plus any involved lymph nodes. Because the nurse who examined me a week ago thought she felt something on the left side as well, the surgeon agreed that I should have ultrasound on the other breast before deciding about my treatment. That ultrasound will happen within the next few days.

My current options (if nothing changes) are lumpectomy (lump removal) + radiation therapy, or mastectomy (removal of entire breast). Outcomes as far as survival rate/recurrence are about the same for both options. Some women opt for mastectomy since it frees them from worry about developing breast cancer again, in that breast. But that doesn't mean the cancer won't turn up elsewhere, which is a possibility. Kaiser is very much on top of this - their breast cancer program is excellent and I have a great deal of faith in the care they provide. That said, I may decide to get a second opinion concerning treatment from the UCSD Moore Cancer Center (La Jolla), which is one of only 39 listed by NCI/NIH as top research/care centers in the US.

So, right now, I'm waiting and thinking. After the ultrasound on the other side, I'll know more. If there is a problem on the left side, that may influence the decision I make about treatment. I can think about this for a little while, but should not put off surgery any longer than necessary. If I opt for removal, I would likely also have reconstruction, which brings its own set of timelines and issues. Some kind of surgery will be done within the next couple of weeks.

I have set up this blog because I wanted a way to be able to communicate with my family, friends, and co-workers. It is important to me that people understand what's happening and take heed. I have no family history of breast cancer and did not believe I would ever hear the words, "You have breast cancer." Please be dilligent with your own self exams - learn to do it right - and do it regularly (I'll post some links). Also, keep your immune system strong - it's your first line of defense against any kind of cancer. This means eating well and exercising regularly, and monitoring your stress levels.

I hope that you don't mind this method I've chosen of communication. I have to weigh my strong desire to inform those I care about with my equally strong desire NOT to talk on the phone about this ad nauseum. I need my energy right now to get well and to think - I'm fighting my third cold in the past month, so clearly my own immune system isn't what it should be. I hope you understand.

Please feel free to e-mail me. I can deal with e-mails more easily than with phone calls. Mom has also offered to field calls on my behalf. She sat in with me this morning with the surgeon, and has been studying the situation and is close to becoming an expert in the field herself.

My love to everyone. Thanks for your good wishes, your support, and your understanding. I will update this site frequently, so stay tuned.

Marcia

Buster wants to blog

Buster's been after me to do this. I keep telling him I won't have time to keep it up, but he thinks I will, so - okay. We'll see what happens.