June 8th marked a year since my diagnosis with leukemia. I have experienced a lot in the past year, physically, mentally and spiritually. My biggest surprise has been a more personal understanding of the permanent side effects of treatment. Sure, I had heard of chemobrain and believed it to be real, but now I know what having chemobrain feels like and how it affects my daily life. Numb toes and neuropathy may be a small price to pay for being here, alive and kicking, but it is a constant reminder of what I have been through.
I have given a lot of thought to the collateral damage that results from cancer treatment. The fact is, it is rarely talked about and only starting to be acknowledged by the medical profession. I think part of the problem is that doctors look at the survivors and compare them to the people who died. Their reaction is, “Why are you complaining? You are lucky to be alive!” Meanwhile, survivors compare themselves to how they were before getting cancer and notice all the damage that has been done by the treatment. Yes, we are lucky to be alive but wouldn’t it have been better not to get cancer in the first place? Of course! Yet there doesn’t seem to be much appetite in the research community for moving beyond the cure to focusing on prevention or finding the cause. One of our goals at the Dr. Susan Love Research Foundation over the next year is to document the collateral damage that current therapies cause and bring the true price of the cure to light. Until we testify to the side effects and complications we experience, there will be little incentive to look for prevention and the cause of the disease.
All you survivors—you who have experienced the physical and emotional toll of cancer treatments–please join the Health of Women (HOW) Studywhere we will be collecting data about your health, treatment and later this year, side effects. And those of you who have not had breast cancer or any cancer, please join as well so that we can figure out what might be the trigger that causes this disease. We need all of you to share your histories, help quantify the side effects of treatment, and to add your voices to the call for more emphasis on research into prevention and cause.
As many of you have heard me say, if we could figure out the cause of cancer of the cervix and develop a vaccine within my professional lifetime, we can do the same for cancer of the breast. I am sure we all are grateful for the treatments that we have received, but I am also sure that we all would have rather not had cancer in the first place. We can be the generation that ends breast cancer if we all join the effort to make it happen!
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
Last edited by 'lizbeth; 07-16-2013 at 11:13 AM..
Reason: addition
Re: Wouldn’t It Have Been Better Not To Get Cancer In The First Place?
I say absolutely to that last line! 'Lizbeth thank you for posting this. I am part of the HOW and urge the women (and men) on this site to join. Have a voice. They are asking OUR opinion. We MATTER. According to the home page on the HOW site there are only approximately 42,000 enrolled and 82% haven't had cancer.
You don't have to have scans, bloodwork, drive to a treatment centre, be disqualified for anything. Just take abit of time to give your history and opinions.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
Re: Wouldn’t It Have Been Better Not To Get Cancer In The First Place?
Amen, to everything you wrote Lizabeth!
Caroline that is amazing 82% of people havn't had cancer. Unbelievable because honestly if I hadn't I wouldn't even think about participating in a study. Wow!! But I am going to do it now. Breast Cancer Awareness has a whole new meaning as well as fighting/battling cancer. But you know better you at least try to do better. I am signing up!!
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
I am signing up!!
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