More Genetic Tests Results

Yesterday afternoon, I heard from the genetics counselor again. She advised that the final genetics tests (the $3000 test) were in and everything was negative. She was thrilled, but not as much as I was. She said that she felt strongly after seeing the results (and she gets more than a positive or negative result) that the fact that my mom and I have both had breast cancer is more coincidental than heredity. She said it could be environmental or chemical or other reasons not yet defined. She advised I continue with my follow-ups as recommended by the oncologist (duh...) and that Rachel and Carol start their vigilence at age 40. As you can imagine, Carol and Rachel were ecstatic! Too bad it takes so long to get good news.

This afternoon, I start the first radiation treatment. One of my co-workers brought me a gift today. She saw a ceramic pink ribbon today telling me that she had been thinking of me when she saw it. I was really touched, considering that before this came about, no one was talking to me at all.

Radiation Simulation - Not a Joy Ride

After the happy moments last Thursday, I headed off to Radiation for the simulation. This is where they position you and draw the markings they need to properly irradiate your breast. In my case, I will have 33 treatments daily (except for Saturday and Sunday).

So they call me to the back and have me go into this dressing room that reminds me of the gym and I have to take off everything from the waist up. Then I'm guided into a waiting room of chairs lining the walls, a lonely TV hanging from a hook and set on One Life to Live, and a lot of cancer magazines. I tried to talk to this lady who walked in a little after me, but she was not very friendly so I just waited nervously and hoped someone would come get me soon.

About 15 minutes later, I was led into a room with a thin metal table with a form that looked like I would be sitting on an angle. So I hop up on this table, which barely is the width of my bodacious body and get into position. I had to put my arms in these boxes over my head and hold onto handles (kind of like a kinky movie or stretching table if you can picture that). My tush was against this hard form so I was in a sitting type position and a hard pillow was under my knees. My head was flat against the metal table and I had to maintain this position for well over an hour while they marked my chest up like a bad Picasso print with Sharpie markers. The markers, in all different colors, ended up staining my $70 bra. It was grueling to stay in that position that long, and I moved slightly after warning them. They were NOT happy. Too bad. I'm a human. Anyway, they ended this torture session with putting 7 tattoos on me for permanent marking - 2 on the good breast and 5 on the affected breast. I can't begin to imagine why any normal person would CHOOSE to have a tattoo!

Next Thursday, I start the real stuff. Oh joy oh joy!

A Lucky Lady

I'm still on a high about my BRCA negative test! So lucky, particularly after reading the breast cancer bulletin boards and all the horrors that women are experiencing from their friends and families. In fact, I was telling David about all the women whose husbands left them after they had their diagnosis. He was in his closet putting away clothes and said to me, "Sorry, you're stuck with me for the long haul" and turned around and smiled. Gawd, I love that man!

All Good News Day!

My genetic test for the BRCA1 and BRCA2 mutated gene came back a week early, just in time for my radiation visit today, and the good news is that I do not have that genetic problem! This is not just good news, it is wonderful!

I don't have to have the prophylactic bilateral mastectomy because my risks have dropped back to the "normal" of others with DCIS. However, the oncologist told me even if the test did come back normal, I should still have the oophorectomy to rid my body of the estrogen that feeds the type of cancer I had. The radiologist suggested I use this oncology gynecological surgeon that I've heard great things about for my oophorectomy/hysterectomy. He's in the same hospital system.

The best part of this test result is that Carol and Rachel can relax a bit. Of course, they must be aware of breast changes, but it won't haunt and scare them. That's a nice gift indeed!

The radiation visit went very well too. The radiologist was very patient in answering our many questions, as you hope they would all be, but many are not. Tomorrow I go back to the radiologist for the simulation visit at 2 PM. During that visit, the doctor positions me on the x-ray table, puts my arms in some position and then tattoos my breast where the radiation beam should go. Then it takes about a week to figure out the plan and then start the daily treatments - 28 to my entire left breast followed by five directly to the lumpectomy site. I go Monday through Friday, 1/2 hour each day, for these daily treatment. Only side effects that I might experience are fatigue and redness of the skin. Doesn't sound too bad.

Feeling Low Today

I am starting to feel very sad for my family. Despite all the good news, they are very stressed and scared about me. David has been very sad and when I try to get him to talk about it, he doesn't know what to say. So I ask him if he's scared about me and he shrugs and says he guesses so. Then he starts tearing up. It breaks my heart. And Carol, who has been away at grad school during all of this, told me today she is very stressed - knowing I've been sick in addition to her boyfriend's grandpa dying in the past month, and my Aunt Sylvia, in the dying process from 10 years of Alzheimer's. Rachel seems to be doing fine. I'm grateful.

I really hate having this disease. I hate having to get treatment. I hate having to do prophylactic surgery. I fear I'll have the BRCA gene mutation. This really sucks and it won't go away, ever. Sure, I'm sure there will be a time when I don't think about cancer 20 hours a day, but it will always be there at the back of my mind. Any long-standing aches and pains will create fear of its return. It's my new pet (monkey on my back), but this one will last a lifetime and my stress will continue to feed and nurture it.

Gee, and tomorrow I can look forward to meeting with the radiologist about the next phase of treatment. Oh boy! Oh boy!

Pink Day

Yesterday was the Race for the Cure, and I had the opportunity to walk with friends, but I just could not do it. Realizing that I would see other survivors there in all different phases of recovery just put the wall up for me. So while I thought I was really far along mentally, guess I am not as strong as I think I am.

Funny thing, though. In the afternoon, I went shopping and ran into a woman wearing her survivor shirt from the event. A total stranger and I started talking to her about the walk and her experience. She told me she received her diagnosis in New York and had come to Baltimore for treatment and was 1 year out from a year of intense therapy. Her joy was having her daughter come down to walk with her. I shared with her that I was a frightened of the experience, and she said she could have never done it the first year either. We parted with a hug - a stranger and myself. Yes, the sisterhood is strong.

The Genetics Counselor Visit

I am so grateful that we live in a metropolitan area where so many resources related to breast cancer are available. In particular, I'm quite pleased with the services I am getting from one hospital system. It makes care easier since all the providers can communicate easily and are familiar with each other.

From past blog entries, you have learned that I have a strong family history of female-related cancers, so the surgeon and oncologist felt strongly that I could benefit from genetics counseling to determine if I had the BRCA1 or BRCA2 gene mutations that are found primarily in Jewish men and women of Ashkenazi descent. Today, I went for that visit and it was eye opening.

The genetics specialist had taken my family history and entered it into a special database to determine my personal risk, which was 19% based on my mother's history alone, compared to 10% of the Jewish women over 40 with history of breast cancer of Ashkenazi descent. She felt it would benefit me and my daughters to follow through with the testing, which is in two parts.

Some insurances won't cover it so I have to be prepared to pay toward it, but David and I discussed this was important to know so we're going for it. The first test costs $600 and it only tests for the BRCA mutations (3 types). If that test comes back negative, they do a more extensive test, which costs $3000. Hopefully, our insurance, which has paid up to now, will cover.

You may wonder what the benefits of this knowledge may be? If I am positive, then I have a 50-85% chance of getting breast cancer in my lifetime, which we know I already have. There is also increased risk in getting it in the non-affected breast in the future along with a possible 65% risk of getting ovarian cancer on top of the breast cancer. If I'm positive, I'll bow out of the radiation and go for a bilateral mastectomy and total hysterectomy, including ovaries to mitigate the risk. David and I discussed reconstruction a while ago, and we're both okay without going that route. I've been reading that should there be recurrence in the chest wall behind the reconstructed area, they have to remove it all anyway. I've enjoyed what I've had for all these years. They've effectively nursed my children, and did their duty so I can accept that they may be more a detriment than an asset.

With this knowledge, I can also guide Rachel and Carol in getting early surveillance, by being proactive. The genetics counselor advised me that new laws were passed this year preventing insurance companies AND employers from denying tests and treatment AND employment based on genetic results. The reason so many young women have recurrence is that there isn't early enough surveillance for those at risk. This way, breast MRIs are given yearly, in lieu of mammogram. MRIs help diagnose the density in younger breasts much better than mammograms so that newly developed cancers can be found before they become invasive. With positive BRCA, surveillance is recommended to start between 20 and 30 years old.

So you're probably asking what it means if the tests are all negative. The geneticist said that there could still be a family heredity, but the particular gene abnormality may not be established yet. Either way, I contribute to the pool of research knowledge that may help someone else.

Other things I learned today. I am considered at higher risk for recurrence just because I am premenopausal with breast cancer, even though I'm over 50. It is likely my mother was also premenopausal when the cancer first started, but the mammograms at that time just weren't that good at early detection, so she didn't know until she had a lump and already had node involvement. The geneticist said that other factors may have prevented my breast cancer from forming earlier. They just don't know enough yet.

So...it continues to be a journey for sure. Some days are more positive than others. Here I go again and wait for results, which I should hear in two weeks. It isn't easy.

Sunday - One Week Later

Wow..I'm far behind on blogging this week. Last Monday, I went to the oncologist. She is a young fiesty spirited woman who felt strongly that I went to the very best breast surgeon around and that my chances for recurrence will be significantly reduced by going the radiation, Tamoxifen, AND...a new addition...having an oophorectomy route. This is all in light of my strong family history of female hormone-related cancers.

She said there is no need to move on the surgery immediately, but we'll talk again about it in January, after the radiation treatments are finished, to decide the next course of treatment. At first, I was really kind of taken aback. Getting your organs removed is not a "light" surgery no matter how they do it. In addition, would it be best to just have all of it removed? After all, I hear that Tamoxifen can cause weird side effects to your uterus too.

So I set out to find some answers this week, and all health personnel agreed a total hysterectomy with oophorectomy is the way to go. It can be done laparoscopy for reduced trauma. Of course, it's unknown whether insurance will pay for it, but that won't be a deciding force. Health comes first!

Speaking of doctors, I also had my post-surgery visit. Since the incision is already healed...talk about fast, I've been released, and frankly, while I really liked the surgeon, this is one person I hope NEVER to see again, at least not in medical wear.

This week I go to the genetics counselor. It should be interesting. According to the surgeon and oncologist, the geneticist has the ability to search nationwide databanks to make informed recommendations. Even if I don't test positive for a known gene defect causing breast cancer, it does not mean that there isn't a gene defect. It may not have been discovered yet. So my participation is one of the ways to help these kind of discoveries. In the meantime, the geneticist works with the oncologist to recommend the most successful treatments based on others with similar backgrounds, health problems, and treatment plans. It sounds like a win-win. For anyone reading this who wonders if the genetics counsler is covered under insurance, it is NOT. However, the fee of $150 for the counseling, possible payment of the blood work (could cost $1000), and a month wait for the results could mean the difference of a more successful outcome. At this point, my goal is to prevent recurrence as much as possible! There is never a price on personal health that is not worth investing in, at least at this point in my life.

As for the other aspects of my life, I was happy to get back to work this week. Thinking about other things besides health is not mental reprieve. Working from home was helpful, however, as I realized my stamina isn't where it was before this started, but it's darn close.

Still no bites on our house or lookers this week, but we're not giving up hope. With the state of the economy, can I blame anyone for not wanting to spend money right now? Our timing has never been quite right...we have historical experience with that..haha.

That's it for now. More after the geneticist visit. Have a great week!

Sunday - October 5

Today was a really great day! Except for lifting some heavy grocery bags with my non-affected breast side leading to some twinges and some oozing from the suture site, I felt pretty good. My energy levels are back, mostly because I'm not feeling depressed.

Still nothing new on selling our house. People in this area are seriously underpricing their homes to sell them, but we're not there yet. In the mean time, we did take a trip to Odenton to see our new house and the progress to date. The builder gave us a key to the house so we could go in and look around. We're three weeks from closing in the event we have a super quick sale so most of the house was put together.

We LOVED the way it looked! The chocolate marble fireplace is just beautiful with the oak mantel. The wood stair banisters are beautiful and match the oak steps. The carpet looks beautiful too. The carpet padding, which was out of our control, isn't quite as plush as we have in our current house, but we were told that using berber limits your choices since they don't want it to show separations over time since there isn't any pile. The ceramic tile and lighting in the bathrooms are just wonderful. The kitchen and mud rooms are just perfect too! We can't wait to make the move!

Tomorrow we go to the oncologist and hope that our luck continues. More tomorrow....

Two Days After Lumpectomy

Didn't sleep as well last night, more because there are issues with my work project than anything else. My breast suture line still twinges a bit and if I run up the stairs, I need to hold my breast to keep it from bobbing up and down, but that's nothing compared to what it could have been.
Today, my breast definitely looks smaller than the one of the right, not because of shape, but rather volume.

I'm still resting, just working on my computer while resting. So, off to finish a deliverable. Have a great weekend everyone!

Feeling WONDERFUL Today!

The lumpectomy went extremely well. I was in and out within 2-1/2 hours from radiology to place the wire into the site through discharge. The surgery was anticipated to take an hour and it took 45 minutes. Recovery was to take 1 to 1-1/2 hours and only took 45 minutes for me to wake up and leave. The pain was not as bad as I thought, and Extra Strength Tylenol did the trick along with ice per doctor's orders and wearing my bra constantly.

I slept well last night, even on my tummy, which is my favorite position. I really felt rested this morning. Before showering, the bandage came off easily, and I could see the surgeon placed the incision totally on the side of my breast and way below my underarm. It will be totally unnoticeable even if I model in strapless gowns and bathing suits...horrors! The best part is that my breast doesn't look noticeably smaller than the other one although I can tell it is a little smaller, and my bra is not as stretched on that side. I'm sure it will be a little smaller once the surgical area heals too, but a small price to pay for my life!

I only wish it didn't take so long to get this surgery done. I feel mentally a million times better that this is out of me and I can move on to prevent its return. The pathology report will close the door on whether more surgery is needed, but I'm being optimistic that the door is closed!

I'm taking the rest of the week to do nothing but relax and sleep and heal. Monday we start again but I'm ready to continue the battle...

Thanks to all who are reading this for your prayers. So far so good.