- Doctor List
- Useful Medical Links
- Irene's Cancer Experience Recommendations
- Irene's Specific History & Diagnosis
- Irene's Current Health Summary
- Photos of me with "chemo hair"
Doctor Contact List
There are many excellent doctors here in central Texas. Listed below are a few I feel or believe are excellent. They are either the doctors who have treated or are treating me, or doctors that have been highly recommended. (Disclaimer, choosing a doctor is very personal, and they might not be a good match for you.)
- Internist, Cedar Park: Dr. Veena Surapaneni, 801 E. Whitestone Blvd., Ste. C, Cedar Park, TX, 78613, Phone: (512) 260-5206, Fax: (512) 260-5211 After Hours (512) 406-3116 (My internist.)
- Internist, Austin: Dr. Steven Foster & Dr. Joshua Reinhart at Family Medical Center in Cedar Park
- Oncologist, Austin & Cedar Park
Dr. Jason M. Melear, Texas Oncology, (Midtown) 901 W. 38th Street, Suite 200, Austin, TX 78705 Phone: 512-421-4100 There are many good doctors at this location. Specifically I have heard good things about Dr. Richard Helmer, Dr. Ellen Smith & Dr. Beth Hellerstedt who is at their Central Location
Dr. Brenda Towell, Texas Oncology, (Cedar Park) 1401 Medical Parkway B, Suite 412, Cedar Park, TX 78613, Phone: 512-260-6050 (She treated a friend, and I have seen her once.)
- Oncologist, San Antonio: Dr. Ronald Drengler, South Texas Oncology and Hematology, CTRC, 7979 Wurzbach, Suit Z327, San Antonio, TX, 78229 Phone: (210) 616-5700 Fax: (210) 614-3310 E-mail: email@example.com (A friends oncologist, he was my 2nd opinion.)
- Surgeon, Austin: Dr. Patricia Morrison, Seton Northwest, 11111 Research Blvd., Suite 380, Austin, TX, 78759 Phone: (512) 338-5201 (My surgeon.)
- Surgeon, San Antonio: Dr. Arthur Rosenthal, 8042 Wurzbach, San Antonio, TX, 78229, Phone: (210) 616-0657 (A friend used this doctor.)
- Plastic Surgeon, San Antonio: Dr. Peter Ledoux, PRMA (Plastic, Reconstructive, & Microsurgical Associates) of South Texas, 4499 Medical Drive, Suite 311, San Antonio, TX, 78229 Phone: (210) 692-1181 Fax: (210) 692-7584 www.prma-enhance.com (He did my reconstruction. I was also impressed with his associate, Dr. Nastala)
- Plastic Surgeon, Austin (no Free TRAM flap): Dr. David Mosier, 6818 Austin Center Blvd, Suite 206, Austin, TX, 78731 (512) 338-4404. I had a great experience and found him very. He arranged for my nipple tatooing. A friend wasn't as impressed, so it must vary.
- Cardiologist, Austin: Was Dr. Jeffrey Michel, but I am not sure where he is practicing now. I am currently seeing a heart failures specialist, Dr. Clay Cauthen with Seton. Ed is seeing Dr. David Zientek who is also with Seton.
- Electro-Cardiologist, Austin: Dr. Joe Gallinghouse, Texas Cardiac Arrhythmia, www.tcaheart.com , 1015 East 32nd St., Suite 505, Austin , TX, 78705, Phone: (512) 617-6000, FAX: (512) 458-7879 (He implanted and montiors my ICD.)
Useful Medical Webpages
As part of my medical adventures I have found the following links to be useful and reliable.
- http://www.nih.gov National Institute of Health
- http://www.mayoclinic.com/ The Mayo Clinic Site
- http://www.rxlist.com/pill-identification-tool/article.htm A great website that can identify drugs from the shape and color. Very helpful if you are unsure of whether you got the right meds or if you have confused your meds.
- http://www.mdanderson.org/ M D Anderson Cancer Center
- http://www.mymdanderson.org/ M D Anderson Cancer Center
- http://www.cancer.org/docroot/home/index.asp American Cancer Society
- http://www.cancer.gov/ National Cancer Institute
Breast Cancer & Reconstruction
- http://www.prma-enhance.com/ My plastic surgeon
Heart, Heart Failure & ICDs (Implantable Cardiac Defibrillators )
- http://www.americanheart.org/ American Heart Association
Irene's Cancer Experience Recommendations
I hope no one else has to face cancer, or breast cancer. However, if someone does, these are a few things I have learned. If someone you know is diagnosed with cancer feel free to point them to this page and to give them my contact information. I would be happy to listen and to answer any questions I can.
For cancer in general:
- When you get the news: Shock. It feels like a kick in the stomach. Have someone perscribe you an anti-anxiety drug initally. While you are seeing the different doctors and making decisions on your treatment a clear head is required. However having a clear head is nearly impossible for those first couple of weeks without some medical help. Also, pray or meditate.
- Unless you are absolutely sure of your situation, consider getting a second opinion.
- Support: You don't have to listen to everyone's story, but actively seek out and talk to people who have and have been treated for the same cancer you have. It gives you a lot of insight, and gives you questions to ask your doctors and helps you make informed decisions.
- During treatment:
- Be easy on yourself. Everyone reacts to drugs or radiation differently. Take the time you need and don't feel inferior because you couldn't work as much as someone else.
- During chemo, drink plenty of fluids, especially the first few days after infusions. This minimizes the chemos damage to your kidneys and bladder. Sometimes during chemo it is hard to drink water because you get that "metallic" or wierd taste. Try tea, sports drinks or diluted fruit juice or anything you can, to get fluids into you. Keeping hydrated also minimizes nausea.
- Accept support. Cards & emails are great. Let people visit or bring food some or do special things for you. They need to do it and you need to receive it. The connections are good.
- Continue some sort of routine for healing your spirit (prayer or meditation.)
- Dual path planning: Actually all people should do this, but for folks with cancer or any potentially life threatening illness it is really important. This means when you make decisions, you balance what you do with your time, money and energy; realizing that you might die soon and you might also live a long time. If there are things that need to be done if you were to die (like a good will, or writing some notes or making peace with someone or a reasonable life long dream) then go ahead and get them done. But don't fail to plan for living either. It is by confronting the possibility of death, and taking care of a few critical things, then you are truly free to live and to hope.
For breast cancer:
- Get a Sentinal Node Biopsy as opposed to a full lymph node resection if possible. (I had the full lymph node resection.) You lose less lymph nodes and have less problems like aching, arm swelling and slow healing of that one arm. The only negative is, that if they later find something in the sential node, they may have to do a 2nd surgery to resect the rest of the lymph nodes. They are doing this in most large cities now, but not all doctors trust it yet.
- Lumpectomy or mastectomy? Happily most folks get lumpectomies today. Certainly consider your surgeons advice. It usually depends on the size and location of you cancer and also your family history. Generally lumpectomies have the same outcome (they are just as good) as mastectomies. However, if you have lumpy breasts, you may find you want to have a mastectomy to reduce future stress. If you do need or choose to have a mastectomy, and want reconstruction look at all types carefully, and talk to people who have lived with the type you are thinking of getting. See the next bullet for what I learned and my biases. If you can't decide it is OK to wait, although you will have a little more scarring.
- Breast Reconstruction: The latissimus flap tunnels muscle from the back and inserts (silicone or saline) to rebuild the breast. This has been around a long time, and is still good for very slender women (no body fat to harvest) and for people that must avoid the TRAM flap. The free TRAM flap transplants fat (and a little bit of muscle) from your tummy to the chest. The surgery for this is the most compilicated (requires microsurgery to reconnect the blood supply) but gives the most natural results. (Fat feels like fat, no inserts to have problems with, and because it is natural more nerves grow back so there is more feeling.) This seems to be the surgery of choice in large cities or large cancer treatment facitilites and this is what I had. You get a full tummy tuck with it, and your tummy remains relatively strong. A popular reconstruction surgery (because it is easier and also uses your own fat) is the pedicled TRAM flap. This time the tummy muscle is tunneled up to the chest to provide the blood supply to the tummy fat up there. Much more muscle must be taken so people often have weak tummy muscles or even hernias after this type of surgery. Also, since the blood supply is remote so it could have problems later. I talked to several women with this type of reconstruction and they seemed significantly less happy with it then either the free TRAM flap or the back flap folks. If your breast are small a simpler alternative is the tissue expanders. Some women I have spoken to have been very happy with this. There may be newer options available, please check with your doctor. Unless there is something new that is better, my summary: Best is free TRAM flap if you are a candidate. 2nd is back (latissimus) flap or tissue expanders if you are small. I can't think of any reason to do a pedicled TRAM flap when better alternatives are available.
How to help a person with cancer (or what helped for me.)
- If you know of people with the same cancer, supply names and contact info. The person may not make contact but it is nice to have the resources.
- Be a good listener. Don't push your agenda. Some people want second and third opinions on everything. Others find a doctor they trust and go with them.
- If they are comfortable with you, offer to drive them to chemo or doctors visits.
- Encouraging or just "I'm thinking of you" or "I'm praying for you", cards and email are great throughout the treatment. Email humor is good too.
- Offer to bring meals or shop if the person wants. Ask what sounds good to them, because during chemo what you can stand to eat varies a lot from day to day.
- During chemo your skin gets really dry so lotions get used a lot.
- Other ideas are magazines, the loan of DVD's or videos and books if you know their taste. You have to spend time recovering from surgeries and chemo treatments.
Irene's Specific History & Original Diagnosis
- Breast cancer diagnosed, Jan 2003. Invasive ductal, 2.1 cm
- Grade: 2, moderately differentiated.
- DNA: Diploid, total S phase 2.81%
- ER/PR: Estrogen receptor Positive. Progesterone receptor positive.
- HER-2/NEU (Hercep test): Positive (2+) but a follow-up FISH test was negative.
- Low grade ductal carcinoma in situ, solid and cribriform type.
- Bilateral mastectomy, Feb 2003 (Left side, modified radical, right side, simple)
- No lymph node involvement
- 4 rounds chemo (Adriamyacin, Cytoxin & 5FU) and CA27.29 rose
- 3 rounds chemo (Adriamyacin, Cytoxin & Taxotere), CA27.29 stayed high
- Aug/Sept 2003 started Arimidex & Faslodex. CA27.29 dropped to normal.
- Free TRAM flap (tummy fat transplant) bilateral breast reconstruction, Nov 2003
- Fast heart rate noticed Feb 2004
- Suspected possible heart damage (congestive heart failure) from chemo drug, adriamyacin.
- 2D Echocardiagrom indicated heart ejection fraction of 20% (50-60% normal.) Mar 2004
- Heart Catherization indicated no blockages. Heart meds started. Apr 2004
- ICD (Implantable Cardioverter Defibrillator) implanted Apr 26, 2004. The device is a Guidant A155 dual chamber device. ( www.guidant.com - similar to model A135) The leads are FLEXTEND IS-2 Bi Positive Fix, 4086 & RELIANCE, 0184. Having this device requires office visits every three months to monitor the device. Also, I will need to have minor surgery whenever the batteries need replacement (hopefully every 5-7 years if it doesn't have to defibrillate me much.) Yes, it sets off metal detectors, so I need special treatment at the airport. Also, I have to be careful to avoid strong magnetic or electrical fields (ie. don't hang around the anti theft devices at stores, no grabbing ham radio antennas, although most normal FCC approved devices are fine.) Also, this little device costs about $30,000. Whew!
- 2D Echocardiagram in November 2004 indicated heart ejection fraction up to 35% from 20% (50-60% normal.)
- 2D Echocardiagram in June 2005 indicated heart ejection fraction 40%. (I am unlikely now to need defibrillation.)
- There is a recall on my defibrillator. I had to get some settings changed, and will get new software downloaded eventually. The fail mode is off and since I am not likely to need defibrillation this isn't too bad.
- 2D Echocardiagram in June 2006 showed my heart seems to have stablized. It is no longer enlarged and but it still is at 40% ventricular ejection fraction.
The July 2005 cancer marker test was just above normal. The retest did come down slightly into the normal range, but my doctor wants to monitor it more closely for awhile to see if it is anomaly or a trend. Of course, I used this opportunity to thoroughly question my doctor.
Just because I am an engineer and wanted to know everything, I did ask my oncologist what would we do if the cancer marker did go up and stayed higher. The first line of defense would be to try a different anti hormone pill instead of Arimidex. I was happy to hear there was another relatively easy treatment to try.
If that didn't work we would just monitor me with more frequent CAT and/or PET scans. We would not do chemo unless there was visible cancer in one of these tests. Chemo has too many side effects and too much risk to use, unless we are sure there is cancer. Typically the cancer marker goes up 6 months before there is visible cancer. Also, the cancer markers can occasionally be false indicators. Sometimes benign tumors cause them to go up and sometimes they go up for no reason. My doctor has one patient with a very high cancer marker, yet she has had no sign of cancer for 10 years.
- The August 2005 cancer marker test was well within the normal range. YES! The lastest checks were also normal.
- In September 2005 I was diagnosed with mild osteoporosis. I started on Fosamax, but because it was so hard on my stomach, after several months I switched to Actonel. Because of continued mild stomach problems (and slight concerns about jaw necrosis) in September 2006 I switched to the nasal spray, Miacalcin.
- June 2007 - 2D-echocardiogram showed my heart function back to normal. Heart ejection fraction is 62%.
- Jan 2008 - Had a MUGA heart scan. Showed normal heart function. Cardiologist had me slowly quit taking the Aldactone and the Coreg
- Mar 2008 - Both March and previous Dec cancer checks showed marker in normal range. Always good.
- Apr 2008 - Another 2D-Echocardiogram. Heart function still normal. Cardiologist is having me withdraw from Diovan over the next three months and will check again.
- Jun 2008 - Defibrillator went off twice. The incident was supra-ventricular tachycardia, probably AV Node Re-entrant Tachycardia. Luckilly this isn't dangerous however subsequent tests showed my heart muscle was getting weaker without the Coreg. I went back on Coreg (a beta blocker).
- Sept 2008 - 2D-Echo showed heart function back to normal - Should be able to have defib removed.
- Sept 2008 - Breast cancer marker normal have low white counts. My doctor is still investigating the cause.
- Dec 2008 - Bone Marrow Biopsy, showed MDS (myelodysplastic syndrome), with bad genetics, this is a rare side effect of my breast cancer chemo (1 in 200 chance). The only possible cure is a bone marrow transplant.
- Dec 2008 - New Year's Eve, the MDS had progressed to acute leukemia.
- Jan 2009 - Hospitalized for 3 weeks with "7 and 3" chemo. ARA-C & Idarubicin
- End of Jan 2009 - Met with MD Anderson doctors, got bone marrow process started. Got a response from the 1st chemo 39% blasts to 10% blasts.
- Feb 2009 - Hospitalized for 2 1/2 weeks with "FLAG" chemo. (Flutarobine, ARA-C & Neupogen).
- Early Mar 2009 - Back to MD Anderson. This time acheived remission. Found 3 possible donors.
- Late Mar/Early Apr 2009 - Consolidation (High Dose ARA-C) chemo. Most as outpatient but was hospitalized for 3 days during the process for fever (probably a platelet reaction).
- Mid Apr 2009 - Brief visit with MD Anderson. Two exact match donors found. Still working on insurance.
- Apr 2009 - MD Anderson working with donor to set up transplant. Still waiting.
- May 29, 2009 - receive donar marrow after a week of bone marrow killing chemotherapy (that was fun)
- Mid June, 2009 - left hospital and began outpatient treatment.
- End Sept 2009 - Home to Austin with near weekly day trips to Houston
- Late Oct 2009 - Back to Houston for GVHD, Low Counts, Blood Clot
- Went briefly home over Thanksgiving, but returned to Austin mid December. Continued day trips to Houston.
- Late Jan 2010 - Back to Houston for a week or so ... hopsitalized for unknown infection
- Mar-May 2010 - every other week day trips to Houston
- May-July 2010 - monthly trips to Houston, weekly tests in Austin
- July 2010 - ICD (Implanted Cardiac Defbrillator) removed! Yes!!! Capped wires in case needed again.
- Currently being managed with every three month Dr. visits in Houston & Austin, and monthly blood tests. Happily there has been no sign of any cancer reoccurance.
Irene's Current Health Summary
- Leukemia (AML) in remission since Mar 2009 chemo & May 2009 bone marrow transplant. Still take lots of meds, am monitored regularly, must be careful about bacteria, virus & fungi & molds, and also avoid sun to minimize GVHD (Graft vs. Host disease.)
- Breast cancer remission since, Sept 2003. Monitor via CA27.29 breast cancer marker.
- Breast cancer current treatment: Arimidex, 1mg pill daily.
- ICD (Defibrillator) implanted for heart damage (that is now healed - YES!) has been removed. Taking coreg (beta-blocker) to maintain heart strength, manage blood pressure, and minimize supra-vetricular tachycardia.
- Osteoporosis: Treatment suspended until after bone marrow transplant.
Irene's Breast Chemo & Post Breast Cancer Chemo Pictures(Or Hair Today, Gone Tomorrow, Hair Again)
For your amusement, here I am with my hair, at various stages of chemo, starting with the "before" picture, going through bald/wig, extrememly short, chemo curls and ending with my current state. Click on any thumbnail picture for a larger view.
Oct 2004 & Dec 2004.
Extremely short (with an extended family member who is living with breast cancer)
and short (with Ed & Ben, when Ben was home on leave from Iraq in December.)
(This is before and after reconstruction too. Note my tummy has been moved up to chest.)
Normal (for me) .......
Lost in ALL again in 2009 for the bone marrow transplant. Came back slowly and and very thin. Still very curly a year later. Now in 2016 it is back to normal thickness, with a bit of curl and body. No complaints.