First Meeting with Dr. Robert

We met with Dr. Robert today. He is just wonderful. He started off just asking me to explain what led to this point, and then went through a detailed and logical explanation of the results and where we go from here. It seems like he covered so much, and though it was easy to follow, it’s hard to go over point by point, but here’s my best shot.

There are two levels of treatment: local and systemic. The local treatment will be taken care of with the lumpectomy and the radiation. The more tricky issue is the systemic treatment: how to destroy cancer cells that my have migrated to other parts of the body. Though the nodes were clear, there is a slight chance that it could have gotten into the blood stream. A CAT scan or bone scan could be done to check if it was elsewhere but he doubted that would reveal anything. The question therefore is whether chemo would be justified. He said that he does want to perform two tests to help make this decision: the Oncotype test and the Her2 test.

The Oncotype test will give a Recurrence Score that is categorized into one of three groups: low, intermediate, or high risk. (According to the web, if a tumor has a Recurrence Score over 31, a high-risk score, this means there's a greater chance that the breast cancer will return. If a tumor gets a Recurrence Score of 18 or less, a low-risk score, this signals a lower chance that the breast cancer will return. If the Recurrence Score is 19 to 30 then the recurrence risk is intermediate.) If the test reveals a high risk, chemo would be recommended. If low-risk, no chemo would be necessary.

He said that the Her2 results from the pathology report I already have are inconclusive, so he wants to run another test. If the results show the cancer to be aggressive, he will recommend chemo even before seeing the results from the Oncotype test.

He reviewed the MRI results and, thank God, they were good. The mammary nodes under my sternum were clear! The radiologist did notice a cyst in each breast: Bi rad category 3 ("probably benign") in the left, and category 2 ("benign") in the right. He said that radiologists are very hesitant to say that a mass they observe is "probably benign", and if they say that, it likely means it is. However, given what I have been through, he said the question was how I would live with it. I appreciated that he factored in how I would feel about having it there, without the certainty that is actually is benign. This is another decision that will need to be made in the next couple weeks, I suppose. Dr. Robert said that he would discuss with Dr. Moynihan (the surgeon) about this.

We talked about other issues, and he answered all our questions, and said that if we thought of any others, we could email him. He’ll be in Hong Kong from 1/9 to 1/26 but will hopefully have the results from the Her2 test before he leaves. He will be able to let us know the results from the Oncotype test while he’s overseas, and we’ll just go from there.

I really thank God for leading us to him. As the nurse was taking my blood pressure, etc, she asked if we were nervous and then said that we shouldn’t be, that Dr. Robert was the best. She said if she was ever to have breast cancer, he is the only doctor she would want.

Thank you Lord for taking us through another day!

Meeting Radiation Oncologist

Today we met Dr. Susan Pierce, my Radiation Oncologist. We arrived at the Fairfax Cancer Center a bit early, and after filling forms, I looked around the waiting room to see who else was there. There were 5 other patients with their families – 3 women in their 50s or 60s, a man in his 60s and a young boy about 4 or 5. It was so sad to see such a young child in treatment. His parents looked exhausted. When his turn came to go in, they were trying really hard to be upbeat for him but he wasn’t in the mood. His cap came off as he went in crying, and you could see that he’s already undergone chemo. We were called a few minutes later. It was only the consultation with Dr. Pierce where she goes over my case, and explains what could be involved. This post covers most of what she explained.

1. There were 3 main options – do nothing, mastectomy, radiation plus lumpectomy. The chances of recurrence in 10 years if I did nothing was about 35%, but with either mastectomy or rad plus lumpectomy, it was 8%.

2. What to expect from the treatment. There would be about 3-4 weeks where a larger area was treated, and 2-3 weeks of more localized treatment. Towards the end my skin would be quite red but that there were creams that would help. She said the area may stay darker for a while but that was temporary. The skin in the area would also become tougher and thicken, but that was also temporary.

3. Since the lump was near the center of my chest, though within the left breast, it would have been difficult for them to get a good view in the mammogram. Because of that, Fairfax Radiology had also done an ultrasound back in April, but still the report indicated that it appeared benign (or something to that effect, not exactly definitive).

4. The position of the lump would make the radiation plan more tricky, not routine, since they would have to use an angle that would avoid the heart.

5. Radiation could not be scheduled until after chemo, if necessary, so we would have to wait to find out what Dr. Robert, the Medical Oncologist, recommended in terms of overall treatment. The possibilities were:

a. Hormone Treatment (HT)

b. HT + Radiation (R)

c. HT + R + Chemo

d. Doing nothing – not an option since the recurrence rate is on the order of 35% in 10 years

6. We are to meet Dr. Robert on Wednesday. He would base the decision on how to proceed on the chances of recurrence of cancer of similar type and size for others in the past, and would provide us with the probability of recurrence within 10 years assuming the various levels of treatment and considering the following: the stage of the cancer, the grade, my age, our preference, etc. Dr. Pierce said he may suggest a DNA test of the cancer cells (oncotype) to provide additional info for making the determination of whether chemo was necessary. She said we could leave our appt on Wednesday with his answer if he did not feel that test was necessary. She mentioned that Dr. Robert was a very good and famous doctor, and was also not very aggressive and would recommend chemo only if he absolutely felt it was necessary.

7. She wanted us to do a Breast MRI and was a bit surprised the Dr. Moynihan hadn’t suggested one. She scheduled it herself for Tuesday at 11:30. She said that MRI’s are great because they are comprehensive – they show what’s going on in both breasts, and also show the nodes below the sternum and the area of the lump. Those were of interest to her and there was no way to biopsy them. She warned us that the MRI could reveal more areas of concern and lead to more ultrasounds, and biopsies, but it was worth getting the additional information.

8. She told us of other risk factors of radiation: temporary cough due to impact on lung, slight risk of onset of cardiac problems, etc. The bottom line was that the benefits outweighed the risks.

9. She offered to speak to Dr. Au, the only radiation oncologist at Loudoun Hospital, but we told her that we were not comfortable with the fact that he worked alone and was not part of a larger practice. She said one advantage she has in being in a large practice is that she’s been able to specialize in breast cancers. We told her at the end of the appt that we had decided to choose her.

We left the appt feeling encouraged that God had provided us with a doctor who communicated well with us, and appeared thorough.

Today, I decided to change my appt at Johns Hopkins to only a second opinion of the decision that Dr. Robert will present us with. Once again I had to make a choice - between two doctors they offered, one a younger lady who was part time at the Cancer Center, and a much older doctor who also practices in Annapolis. I went with Dr. Watkins (older man) since I saw he has given recent presentations on breast cancer research… I’d prefer to have had a referral but don’t have anyone to ask.

I’m feeling good tonight, and as the song goes, God has calmed another storm in my life…

I thank God for another day!

It's Christmas Day and we're all relaxing for now, till it's time to head out to see 'Avatar'. It's been a fun day, with lots to eat and great company, but I'm feeling particularly good cos I finally washed my hair this afternoon! It was driving me crazy - it's been about 11 days since the surgery and I'm not sure when exactly I washed it before then. Kept imagining dirty water trickling into the incision under my arm... Had planned to ask Mama to wash it for me while here in Midland, but it turned out not to be a problem at all doing it myself. I need to try and be more patient with this healing process, but understand it better now. Mornings are tougher physically - for some reason, there's more swelling and discomfort after lying down but it's temporary.

On the other hand, you never know when you'll be hit with a low emotionally. Went to see 'New Moon' the day other day, and as Bella got more confused and distressed about why Edward had left, I found myself worrying about whether I'd ever figure out how to eat enough healthy food to stay strong enough to handle chemo.... :-( Ridiculous I know but until I told Chinya about it (during the movie, that is) and he reminded me of how blessed we've been about the diagnosis so far, and how we know the Lord's in control, I couldn't get it out of my head. I was able to bounce back and enjoyed the rest of the movie, and since then I've tried to keep from dwelling on those kinds of thoughts. One way I've found to keep focused is by singing or listening to worship songs. It allows me to relax and regain my sense of peace. Even in a book I was reading on the drive to MI, "Eat Love Pray", it talks about how the reason prayer beads in the Hindu and Catholic faiths was to allow the person to focus on God for extended periods. I don't need beads but singing instead helps me...

Another book I was reading on our drive to MI is one Sheila sent, "Foods That Fight Cancer" by R. Beliveau and D. Gingras. It's fascinating to read how much of an impact diet can have on our chances of developing cancer. It talks about how "though Asians in generally suffer from an incidence of prostrate cancer several times lower than that of Westerners, an analysis of biopsies performed in a sample of both of these populations showed that the number of prostrate cells on the way to acquiring cancerous properties (precancerous cells) was exactly the same in both....The development of these cancers is thought to be caused by a disturbance in the work of our natural defense systems... With the right diet (with fruits and vegetables), the precancerous cells are unable to access the blood supply they need to grow, i.e., our anitangiogenic defenses win out. I wish the need to eat fruits and veggies had been put to me this way long ago. Just last week I was say how much I disliked green tea and soy milk, and look at me today - drinking both eagerly. Never say never...

I thank God for giving us his Son to die on the cross for our sins, and thank Him for this Christmas Day!!

The Search for Doctors

"The lab results were negative." It's the best news we could have heard (about my diagnosis, that is) and it had been confirmed. We was so relieved, so thankful - couldn't wait for the doctor to leave the room so we could celebrate! It was Dr. Moynihan's assistant (Ms. Shah) and she initially said that the cancer was Stage 0 (pre-cancer, in situ ductal canceroma) but she didn't realize she was looking at the results of my second surgery, so she left to go and take a look at the first surgery results... Chinya dropped to his knees and we both sang praises - God is good! She did come back to say that the first tumor removed was pT1c, Stage 1. The stage is based on the tumor size (up to 2cm, mine's 1.5cm), presence in nodes (no) and whether its mestasized (or spread; not checked but not likely since not in nodes). Dr. Moynihan came in and said that he'd see me again in 6 months and I should do a mammogram before coming in. We then asked Ms. Shah for recommended oncologists. We told her we were interested in John's Hopkins as well as Fairfax, but she asked where we lived, and since radiation is done every day for 6 weeks, we should use someone closer to home. She gave us Dr. Au (Radiation Oncology) and Dr. Irwin (Medical Oncology) who are with Loudoun Hospital, and Dr. Robert and Dr. Wilkinson (Medical Oncology) with Fairfax Hospital.

Since then I've spent lots of time on the phone, scheduling appts and checking insurance... I know have an appt on Dec 28th with a Radiation Oncologist with Fairfax Hospital, Dr. Pierce. Going to Fairfax Hospital takes more effort (it's about 25 miles away, as opposed to 4 miles for Loudoun Hospital) but after initially scheduling with Dr. Au, I spoke to Sheila and asked if the selection of the Radiation of Oncologist was as impt as that of the Medical Oncologist. She thought not but at the same time, she told me more about the process involved in the radiation treatment, and that if you have any reservations about your choice, you should trust your instinct. I've never had as much confidence in Loudoun Hospital and I knew that I would feel more comfortable with doctors at the Fairfax Cancer Center... I also have an appt on Jan 13th with a Medical Oncologist at John's Hopkins, Dr. Stearns. I had a choice of just a second opinion, or for examination for possible treatment there. I selected the latter, and may change that though. Maybe a second opinion is all I should go to them for. If I make the change, I'll have to re-schedule since different doctors offer second opinion. It's still not clear if our insurance covers John's Hopkins since it's in Maryland - insurance company said no, but hospital says yes, so I'll just have to wait to see if they call back. My final appt is more difficult to schedule. I am trying to get Dr. Robert of Fairfax Hospital as the Medical Oncologist at Fairfax Hospital but so far no luck. They said I should call again tomorrow....

My incisions have pretty much healed now, a week after surgery. The one under may arm pit is still uncomfortable, but nothing that requires meds. Had to call the surgeon twice after hours - last week cos my shoulder and upper arm were numb but he said that was normal. It comes and goes but hasn't been bad since that first day. Today I called cos the veins on the left side of my left breast were unusually prominent, and lumpy - was like this morning as well - and he said I should use a warm compress and take a baby aspirin every day to soften them... These issues do make me kinda anxious - don't know how to react when I feel strange sensations. Don't want to alarm anyone, or make them feel I'm overly concerned, but don't want to ignore things I notice either.

I'm going to try and use our juicer every day if I can get to the store for veggies and fruit often enough. Both Nana yesterday, and Maggie today, suggested I do it. Enmartz helped me figure out how to use it - we've had one for a couple years and never tried it! Used all sorts of left overs from Daddy's party over the weekend (even brussel sprouts) and it was delicious! Also had some dark chocolate... Hope this lasts. I'm not too disciplined about these things but now I have to report on myself online... why did I sign up for this? :-)

Thank God for a New Day!

Tomorrow I have my post-op appt and I expect to hear what they have learned from the lab testing of the node biopsy, and what the treatment options are. We’ll ask about oncologists, both at the Fairfax hospital and at Johns Hopkins, and see who Dr. Moynihan recommends. Most of the pain is gone around my lump incision but the one under my arm pit is still uncomfortable, but better since I took the bandage off yesterday. It’s funny how it’s little things that remind me that things are not quite the same – taking a hot shower used to be a highlight of my evening but now I dread it - I have to come up with ways to have the hot water on my back without wetting the incisions; and I don’t enjoy my morning coffee or my daily chocolate snack anymore - instead I wonder if all the not so good stuff I’ve had over the years have contributed to this... Anyway, on to more important things... Today I realized that telling others about my cancer can actually help some others – to not put off their annual pap or to follow up with a lump. It’s actually becoming more difficult to tell people about my cancer though. I think because initially I was in shock myself and needed support, I couldn't stop talking about it… now that I’ve more or less come to terms with it, it seems there is less to say, and it takes more energy to talk about how serious a condition this is... just want to say that we are trusting God through it.

I’ve been reading Dr. Susan Love’s Breast Book, and it’s packed with great information both for those with and without cancer. I think if I’d read this back in April when I had the mammogram, I probably would have pushed to have the lump biopsied. It talks about how if we feel there is something wrong with a lump, despite what the doctor may observe, we should insist on the biopsy. We feel the lump from both inside and out, while they feel the outside. I knew that there was something weird about it – yes, it was round and smooth, which is supposed to indicate a benign lump, but I didn’t feel right, even before it started to grow. The section in the book about interpreting mammograms was also interesting, and I can see how the current debate has led to the opinion that women should not have them regularly. Seems the accuracy of the diagnosis seems to have a lot to do with the experience of the mammographer/radiologist. It was interesting that the author herself said that if the radiologist wasn’t sure after reading a mammogram, and had written to her that a patient's lump “was a possible fibroadenoma, but cancer can’t be ruled out”, she would have had two choices, either wait 6 months and see if it grew, or if the patient were really anxious, have it biopsied. I’ve always been more likely not to want to disagree and to hold in any reservations I have, but in the case of our health, it should not about being polite or agreeable. It came up in conversation with Oni today, how for the doctor we are just another case, but for us, it's about our survival and we need to take more responsibility.

I thank God for another day!

I am so thankful today. Yesterday was a roller coaster ride of emotions, but it ended on a high with us finding out that the preliminary results showed no cancer cells in the Sentinel Node under my arm pit. Once again the staff at the hospital was wonderful, and as I sat in recovery, an older nurse who'd taken a liking to me and Chinya, came over to tell me that the doctor had spoken to Chinya and the news was good.

After attending church, listening to the message on how much we are all loved by God, and hearing some powerful gospel music on the radio, the fear I had felt the previous day was gone. I felt positive and throughout the day was only focused on trusting Him and facing what was ahead without fear. I was shaken by how much weaker I found I was when I got to the hospital. With so much going on around me, I couldn't focus. But Chinya stayed with me till I went into surgery and I really needed him there. The lowest point was when I found out I had lost 10 lbs since I last weighed myself - that scared me. The nurse came in just then and said I should go ahead and cry, that this was hard, and that she had gone through this in 'o8, and 'look at me, I'm back at work'. This had been what I had longed to hear from the nurse I spoke to on Friday, that she had had cancer and recovered, and here my nurse was saying it! I felt so encouraged by that, and felt that was just one more person God had placed in my path to make it easier for me.

The pain has nearly all subsided this evening, and it helped that I spent most of the day in bed. It's been so great to talk to so many people over the past couple days, especially one person in particular who I haven't been close to for a long while - she called several times to say that she and her friends are praying for me. It's been such a wonderful experience in this way, and I am really lifted up by it all.

I thank God for a new day!

I have breast cancer. I still don't fully believe this myself. I went for the surgery on Nov 30 '09 to remove a "chest wall subcutaneous mass", what the radiologist had called a "pimple" inside my skin when I had the mammogram in April. I had noticed the lump in a few weeks before and told my gynecologist about it and right away he scheduled the mammogram. When he (Dr Kusic) heard is was just a cyst, he said there was no need to take it out. Towards the end of the summer, I noticed it had started growing and during my next pap, in Sept I told him I wanted to take it out. He gave me a name of a good surgeon and I had to wait till Nov to see him. It was a long 6 weeks and I felt the lump growing weekly towards the end. It was getting so that it was painful and I could feel it there even without touching it. The day finally came and somehow I thought he'd take it out on the spot. Of course he didn't but within a week (Nov 22) I was in his office operating room. He must have pricked me 5-6 times with local anesthetic but the pain was excruciating as he continued to cut. Dr Moynihan said there was no point in hurting me and he'd schedule me to do it in the hospital under general anesthetic. Chinya was in the waiting room, and I texted him to say it didn't work. I was really disappointed, in myself as well for not handling the pain. Waiting the week for the surgery date was difficult - I was cut up, not sewn up completely, prone to infection...but most of all what bugged me was that the lump was still there. I thank God - he was able to fit me in for surgery the very next Monday (Nov 30) and I was feeling good as Chinya dropped me off.

As I waited the hour or 90 minutes to be taken in, I read a good portion of Khaled Hosseini's 'A Thousand Splendid Suns' , so my memories of that morning are filled with Mariam growing up in Afghanistan. I was taken in early and the staff so so good to me. There was a young Asian intern hovering around, asking everyone questions about the case and my chart, and he finally came to me and asked me what had led me to this point. I appreciated his intensity. After the procedure, Chinya came to get me and though it was painful, I was very relieved. As I drove for my post-op appointment yesterday, I thought that at least I could be confident that it was OK since I hadn't heard back from the doctors during the week and a half. But God knew otherwise...

When the Dr Moynihan came in to speak to me yesterday, his first comment was 'I hope I didn't hurt you too much'. After I told him it was all find, he said two words. Breast Cancer. I just looked at him as he repeated it and went on and on. I didn't hear anything except that I had to come back and he was scheduling me for something on Monday. I thought of the kids and them not having a mother... I asked 'Am I going to die?' Sounds silly now but everything was spinning. Since the appointment was only supposed to be a time for him to look at the wound, I had come alone. I called Chinya and told him and I cried and cried. I wanted to hear someone who had had cancer tell me it would be OK.

By the time the kids got off school, I was feeling much better. I had regained some focus and was getting to a place where I could see that I would be able to face what was ahead, WITH GOD GIVING ME STRENGTH. As Shola shared with me Jer 29:11: For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you plans to give you hope and a future. However, it wasn't till I spoke to Sheila that I took the pathology report out and started to go through it. It was helpful to have her help me understand parts of report, and hear about the advances in cancer research and how perceptions of breast cancer today are still based on experiences of those who were not able to benefit from treatments available today. She told me of her cancer center, and I wondered whether there was one here. Last night Kemi went over the report line by line, and told me a website that would help me understand it. Before I went to bed, I started to go over the documents that the Breast Care Navigotor at the doctor's office had given me. I found information about understanding the report, infot about the Cancer Center at Fairfax Hospital, etc, etc. I decided that in the morning, I would start to go over what I had, so here I go....

Final Diagnosis -

Tumor size: 1.5 cm

Skin: Invasive carcinoma does not invade into the dermis or epidermis (Dr Moynihan said this was good)

Ductal carcinoma in-situ is present (0.3cm)

Histologic type: Invasive Ductal Carcinoma (Invasive means that cancer has grown beyond where it started. This type of cancer begins in a milk duct but grows into the surrounding tissue. It's the most common type of breast cancer.)

Grade 3: Cells are fast growing (high nercrosis present)

Margins: Invasive carcinoma less than 0.1cm from medial margin (This is why I have to go back on Monday for more surgery. Margins are the normal tissue around the tumor. They did not find 'clean margins' completely around the tumor and so it's likely that they did not remove all of it.)

Don't know much more at this point. I feel more anxious now that I have gone over this. Over the next week the doctors will learn more and figure out the path ahead and I need to just stay focused one day at a time. This weekend I am preparing for the surgery on Monday. When I get in they will inject me with a dye that will help them located the Sentinel Node under my arm pit. They want to take this out to check my condition of my lymph nodes. Then they will go into the same incision and remove what need to. I pray for direction and wisdom for Dr Moynihan as he does the procedure.

There's so much I am thankful for:

1. Chinya and I are in a good place in our marriage. He says he's with me forever... if I am without a breast, a leg, anything...

2. I have Kemi, Kumbo and Yinka living close by. To come home from the doctor yesterday and have Kemi home to hug me and tell me she now knows why she is here...

3. Mama and Daddy arrive on Monday. Couldn't have planned this better :-)

4. I am closer to my cousins (Shola, Kunbi, Bumi, Tunji and Bisi) and their families than I have been in years

5. I didn't have to agonize through a long period before they took the tumor out. By the time I found out I had cancer, a large lump was out of me.

6. I live at a time when cancer research made strides

7. I have others, like Chinya and Sheila, who have have fought through life-threatening diseases. Chinya encourages me not to be depressed but to keep living and trusting God through it. Sheila encourages me to rely on those supporting me, and not feel I have to be strong all the time.

8. The kids have their own relationships with God, and are not devastated by the news.

9. I am working part time so I can take time off without any issues.

I thank God for this new day!