Tamoxifen and Bone Pains

On November 8, 2011, I was declared NED or No Evidence of Disease by my oncologist.  Commonly, we know it as in remission.  After my blood test results showing no increase in my tumor markers CEA (Carcinoembryonic Antigen), CA125  (screening for ovarian cancer) and CA 27.29 , antigen found in breast cancer patients.

My oncologist told me though that to be declared in remission, I have to be NED for 5 years and to be cancer-free, I have to be NED for 10 years.

Three months have passed again and my blood test recently on January 27 showed that my CA 125 and CA27.29 are within normal limits still but my CEA is elevated at 5.1  (Normal limit is 3.0)  My PET scan, brain MRI, lung and liver scans show that there is no metastasis or spreading of cancer.

However I have been experiencing severe bone pains, tiredness and coughing for more than 1 month.  My oncologist is still trying to investigate where it is coming from.  I asked if it could be from tamoxifen, the hormone therapy drug that I started taking in November to shield me from cancer recurrence.

We are trying to find out the cause. I will be off tamoxifen for two weeks and will come back to see Dr. Audeh of Cedar Sinai to report the difference in how I feel.

I have not been taking Tamoxifen for one week now and I have not been feeling the bone pains and the coughing has gone away. There is still a little tiredness but better compared to when I was taking the medication.

Could it be tamoxifen that makes me feel tired, the bone pains and difficulty in breathing?  These are listed among the drug's side effects from what I read but the statistics are low. On the other hand, I have non-stop headaches.  No pain reliever has helped so far.

Now, I am just relishing being bone pain free. I should be thankful that there is a drug that can help me reduce the possibility of recurrence.  But I wish there were less side effects on me.

If you are taking or have taken or know of someone who has taken tamoxifen, what side effects have you or they felt?  What recommendations were given by your/their oncologist to ease the side effects?

The journey continues... to take tamoxifen and live with the side effects that come with it or take the risk and be pain free?

No one has to face cancer alone.  

If you're a survivor, carry it as a badge of honor. 
If you know someone who is a survivor, give it as a gift of praise and encouragement.
If you know someone who was just diagnosed, give it as a gift of inspiration, that she too, can survive it. 
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Post Surgery Updates

I'm back on the blog!  Thanks to everyone who sent their prayers and thoughts our way.  It meant a lot whenever I get to read a message from all of you.  Each one of them kept me stronger everyday.

Thanks to my better half Jim, for keeping the blog going for awhile. Despite his very busy days, he found time and stayed up till 5am to write the entries.  And still have to wake up early at 8am to attend to Jcube and me for the rest of the day.  Thanks to my sister too who's been on top of everything I need help with, from waking up to going to bed, she was like an extension of me.  Seems like she never rests.

Its been 10 days since I got out of the hospital.  Nothing is better than being home with family.  The love is overflowing and I know they are there every minute to support me. I cant thank Jim and Mhae (my sister) enough. Also baby James for the entertainment all day long. Although I have a lot of rough days physically and emotionally, they still continue to help me in every way possible. 

I can barely remember anything while I was in the hospital.  My memory seems to be from the few seconds I was in the operating table while the anesthesiologist was counting down to make me sleep then it jumped to about 5 days after the surgery.  I was told that because of the long 12 hour surgery, the anesthesia was significant and the strong pain medications given, a lot of things were blurry.  I remember though I was having rough times while I was on morphine drip.  I was having hallucinations, nightmares and chills.  My appetite was also nonexistent while I was on I.V. pain medications.  

When i got home, I had drains in my chest to get fluids out of the surgery sites, to avoid seroma.  The body tends to fill up with fluids where tissues have been removed.  I had two drains in my abdomen too but the doctors had to remove it while I was still in the hospital, way earlier than it should be, because it was pressing on nerves which were causing a lot of pain.  The fluids had to be emptied frequently and monitored in terms of volume.  The goal was to remove the drains when the output was lower than 30cc.  I had my chest drains removed on Friday, March 25, two days after I was discharged.  It was a whole lot of relief because the tubes were between the skin and chest muscles that ran across my chest to the armpit.  Everytime I moved, it gets painful.  Even turning my head became painful on the chest.  I was so afraid of getting it removed because of the thought of having tubes sliding out of my chest, awake and sitting upright without anesthesia.  But I made it!  Thanks to Jim holding my hand the whole time.

I feel lucky to have it out in 10 days after surgery because some people have it for almost a month.  The longer you have it, the more prone to infections you are, plus the irritation to the muscles is tough.

On Tuesday, March 29, I had my first follow-up visit with my breast surgeon Dr. Helena Chang and plastic surgeon Dr. Jaco Festekjian, who are both the best doctors in their fields.  They both said my wounds are so far healing good!  I was so glad to hear it.  It will take 8 weeks though before I can return to normal daily activities. 

I was also given the reports of what was done in the surgery and the surgical pathology results:

- simple mastectomy was done on the left and it was clear of cancer

- modified radical mastectomy was done on the right and two cancerous lumps were removed, one was 5cm and one was 2cm.

- 20 lymph nodes were removed from the axilla (armpit)  and 6 were cancerous with the largest cancerous deposit measuring 2.6cm.

- The cancer cells have a histologic grade of Grade 3 (out of 3)

-  The tumor biomarker Ki-67 is 50% (anything more than 20% is high)

- The hormone receptors of the cancer cells are 90% Estrogen positive, 3% progesterone positive and HER2 negative

- the margins were clear

Given all these, the cancer stage is now Stage 3  and TNM staging T2N2aMx

The five-year survival rate is 67% and the eight-year survival rate is 40%.

These results will determine the cocktail of chemotherapy drugs and radiation that I will be receiving. I will be meeting with the Oncologist - Dr. Glaspy of UCLA on April 7 to discuss these with him. 

My surgeon also ordered to get physical therapy sessions to start four weeks after surgery and lymphedema massages for the right arm. 

From now on, I will be at risk for Lymphedema of the right arm because numerous lymph nodes were removed.  The lymph nodes filter the lymph fluid, removing bacteria, viruses, cancer cells and other substances that could cause harm to the body.  Without it, fluids can start to build up in the tissues and it causes swelling, pain, numbness or infection of the arm.  There are many things I should do to avoid this such as:  not having blood drawn, IV, vaccinations, blood pressure cuffs on the right arm for the rest of my life.   I should avoid cuts, wounds, scrapes or insect bites on this arm.  No heavy or repetitive lifting on this arm.  Avoiding sunburns or burns on this arm.  Avoiding sauna or hot baths.  Wearing gloves when doing household chores like dishes, gardening etc to avoid cuts and infections.  Wearing compression sleeve and gloves in high pressure cabins or high altitude.

I just need to be aware of how to take of care of my arm from now on. It will be a bit of adjustment in my daily activities but I know its manageable. 

I am still wearing a binder on my abdomen to hold the long incision that stretches from side-to-side, where they took the fats, skin, veins and little muscle to place on my chest for the reconstruction.  I have to stand slouching to avoid stretching the sutures. 

So far, my chest is numb and it will take a while before the nerves will rebuild itself to get normal sensation.  The nerves usually grow back about 1 inch per month.  

The pain and sensation on my right armpit, shoulder and back will go back to normal in about 18 months.  

It will be quite a road to recovery but I am glad I got one step done in the list of treatments we have lined up.  I can't wait till I am up and about to hug, play rough with James and bring him to the playground again. I can't wait till I can have date nights with my honey-bunny again.

Next up..chemotherapy.

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

The Biopsy Results

After what seemed like the longest four days of my life, I got the pathology result at the breast clinic.

From Friday to Tuesday, I armed myself with all the information I could gather about breast cancer. Even though at the back of my mind, i still cannot embrace it, I did not want to be caught off guard again and not be able to ask questions IF EVER the result came back positive of cancer.

I remember when I went in for the ultrasound, I was quite confident it would just be plugged milk ducts so I didn't prepare myself with questions to ask. This time around, I had questions written down like a news reporter.

As I was called by the nurse to take my vital signs, I wasn't aware that I was nervous until she told me that my heart rate was very fast, 119 per minute.

Jim was at home to take care of baby James so we agreed I will call him on speakerphone so he can hear everything the doctor has to say and ask questions too. I was very composed, I say. I psyched myself up that I cannot cry or breakdown because I need all the details I can get.

Melissa, the breast cancer nurse practitioner came in and started examining me again. She sat down and gave me the news: I have breast cancer, approximate stage 2B invasive ductal carcinoma with focal necrosis.

Okay. I was still calm. I started asking questions while jotting down the details.

1. How big is it: one was about 4cm in the 11 o'clock position. The other one was 1.5cm near the areola.

2. Is there lymph node involvement: yes. Based on the ultrasound and clinical exam, there is palpable gross lymph node involved. They will know more when they do lymph node dissection operation.

When lymph nodes are involved, it means cancer cells have spread outside of the breast and have possibly spread to other parts of the body.

3. What stage is it: stage 2B with the possibility to go higher depending on the results of the next series of tests.

Based on breastcancer.org, There are 5 stages of breast cancer:
Stage 0: used to describe non-invasive breast cancers such as ductal carcinoma in situ (in place) and Lobular Carcinoma in situ. In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or of getting through to or invading neighboring normal cells.

Stage 1: describes invasive breast cancer with tumor measuring up to 2cm AND no lymph nodes involved.

Stage 2:
2A: no tumor in breast but cancer cells are in axillary lymph nodes OR tumor up to 2cm and has spread to lymph nodes OR tumor 2 to 5 cm and has not spread to lymph nodes.

2B: tumor is larger than 2cm up to 5 cm and has spread to lymph nodes OR
tumor is larger than 5cm but has not spread to lymph nodes

Stage 3:
3A: no tumor is found in the breast but cancer is found in axillary lymph nodes clumped together or sticking to other structures, or spread to lymph nodes near breastbone OR

Tumor is 5cm or smaller, spread to lymph nodes clumped together or sticking to other structures OR

tumor is larger than 5cm , spread to lymph nodes clumped together or sticking to other structures.

3B: tumor may be any size , spread to the chest wall and/or skin of the breast AND
may have spread to axillary lymph nodes clumped together or sticking to other structures. Cancer may have spread to lymph nodes near breastbone.

Inflammatory breast cancer is stage 3B

3C : No sign of cancer in breast or if there is a tumor of any size, it may have spread to the chest wall and/or skin of the breast AND
cancer has spread above or below the collarbone AND
cancer may have spread to axillary lymph nodes or to lymph nodes near the breastbone.

Stage 4:
Invasive breast cancer that has spread to other organs usually lungs, liver, bone or brain.

4. What do we do next: I need to get blood tests to check for tumor markers which will detect cancer activity in the body. Circulating tumor cells are cells that break off from the cancer and move into the blood stream.

Chest X-ray to check cancer in lungs.

Bone scan to check cancer invasion in bones.

MUGA (Multi gated acquisition scan) scan to test the condition of the heart, to withstand chemotherapy. One of the drugs used in chemotherapy, Adriamycin , can be toxic to the heart and can lead to heart failure.

Other tests to follow are estrogen-receptor, progesterone-receptor and HER2 tests to define the breast cancer further. These tests are crucial in treatment because being positive to these receptor means the cancer can be treated by not "feeding" it with these hormones.

I am also a candidate for the expensive genetic testing to find out if I have the BRCA 1 or 2 gene mutation (Breast Cancer Susceptibility gene) known as tumor suppressors.
Deleterious or harmful mutation of these genes greatly increases a woman's lifetime risk of developing breast and/or ovarian cancer.
This discovery, in case, will affect my treatment and will enable other family members to get tested too.

5. What do you do next for treatment:
I would need to be in neoadjuvant chemotherapy as soon as possible. We are looking at within 2-3 weeks.

Mastectomy. The whole breast needs to be taken out because the size of the lumps and the locations do not make me qualified for a lumpectomy anymore. Removal of both masses leaves the breast basically gone.

Radiation therapy. After mastectomy, I will be treated with radiation on the site of surgery. This will destroy cancer cells in te breast that may stick around after surgery. It decreases the risk of recurrence.

Hormone therapy. If the cancer cells is shown to be positive to estrogen, progesterone or HER2, I will be given hormones for at least 5 years.

She said they are pulling the big guns on my treatments because I'm young. I thought being young with breast cancer has an advantage. But it was otherwise. According to youngsurvival.org, compared to older women, young women generally face more aggressive cancers and lower survival rates. More and more evidence shows that breast cancer before age 40 differs biologically from the cancer faced by older women. A lot of startling facts can be found in this site that helped me learn more.

Despite the prevailing belief that young women cannot have breast cancer, we can and I did. I am even breastfeeding at the time of diagnosis. Even though breastfeeding has been known to decrease breast cancer occurrence.

Ok. These were a lot of information to digest. I was still composed and hoping Jim was still listening over the phone. We can hear James playing in the background so it was a good breather for me.

Finally she told me I can get dressed and wait for her to schedule these tests asap.

As I was getting dressed, it started dawning on me, I'm in for a big fight. A very big and long one.

It was comforting to know that I have a life long partner to go through this challenge with. I also have a son to push me to fight for my life. They are my source of strength.

But then I still cried. I cried hard than I can ever imagine. I cried to Jim over the phone for a good ten minutes or so. I was crying because I was sad he has to go through this too. I know it will be tough for the caregiver as much as the patient. Emotionally, physically psychologically. I was sad for baby James, although he still doesn't understand it, he may see me sad or weak at times. I'm his primary playmate and I love that. I'm sad that I might not be anymore at times.

But I had to console myself, bring my self together to drive home. The journey will start.

If you can , please help in raising funds for Krissy's Breast Cancer treatment: