Learn from our Mistakes -May save your Life

Pat, my beloved wife, became an angle after suffering for nine months. The only consolation I have is her suffering ended but I was devastated. She was very religious and caring person. All the advances in detecting and treatment tools for cancer could not save my best friend of 47 years.

Here is a brief description of her diagnosis and treatment:
Pat (61years) was diagnosed with recurrence inflammatory Triple negative right breast cancer, stage IV (Squamous epithelium and sub epithelium with dermal infiltrating triple negative carcinoma of right breast) in 2009.  Six out of eight auxiliary lymph nodes and one intramammary lymph node were positive for metastatic carcinoma. Her Dr's. Were saying it was very aggressive type of cancer. She had chest wall recurrence with multiple skin met within two weeks of right breast mastectomy. Her cancer had spread to left breast and lungs. She has
bilateral pleural effusion, difficulty in breathing and very week. She could not sit, stand or walk. Slight exertion resulted in difficult breathing. About 800 to1000cc of fluid was removed from each lung. After removing fluid, she felt better for a while.  She had all the typical side effects of chemo like nausea, hair loss, fatigue, weakness, and neurological symptoms. My Onco gave up
hope.  In this condition, I could not take her for a third opinion.  

Treatment: She had four cycles of Adriamycin + cytoxan and one cycle of Taxotere. She could not tolerate Taxotere and it was discontinued. She had right breast radiation for 28 weeks and carboplatin for six weeks. Her brain scan and bone scan were negative. Her cancer had spread to skin and lungs.  She had xeloda for two weeks.
 
IN 2003 she had right breast cancer TICNOMOCR+INFILTRATING DUCTAL CARCINOMA.
Sentinel, maxillary lymph nodes had no malignancy. She received radiation and Tamoxifen at
that time. She was cancer free for six years. Her mammograms were negative all the time, even 4 months before recurrence.  

Mistakes we made:
1.      should have chosen a breast cancer specialist for treatment.  Breast cancer specialists are more knowledgeable and treat breast cancer patient only.  Jack of all and master of none type will not be suitable. For most Dr.'s, a patient is a number, live or die they don't care much. This is my experience; it may not be true in other cases.

2.      Hospitals give ads in the newspapers displaying a photograph of cancer specialist, don't fall for this. Check the credentials and experience of the specialist before you make an appointment. We went to such a specialist. Onco saw Pat after waiting for 45 minutes, before completing Pat's exams he/she left for another 20 minutes.  He/she went to see another patient. It is not unusual
in some clinics /hospitals to see more patients in a given time. It is a business. Onco also recommended consulting a radiation onco in the same hospital. Since it was too far, we went to another radiation onco in a nearby hospital.

Note: When a cancer patient receives radiation treatment, a second radiation is not prescribed. It was mentioned in a medical journal. Pat was given a second radiation.

3.  Six years ago when Pat was diagnosed with Ductal carcinoma, she was given radiation and Tamoxifen.  Her skin in the chest area was burnt badly and had lot of
discomfort. She could not complete all the recommended radiation.  Don't know whether her cancer came back because she could not complete assigned radiation
therapy. (Radiation onco was of this opinion).
 
4. Radiation treatment:  Skin met subsided with treatment but the sad part of
radiation treatment was skin met kept creeping towards neck area. There were blisters which burst open causing some bleeding and lots of discomfort. More radiation was given to
control the new growth. Before radiation treatment, Pat had a PET scan. Her breast cancer didn't spread anywhere except skin on the right breast and one lymph node in the left axilla. During the course of treatment, I asked the radiation onco if he can give radiation treatment to the lymph node in the left axilla to stop the spreading cancer - Nip in the Bud.  He denied. Spot
treatment of the right breast with radiation could not prevent cancer from spreading to the lungs and left breast. Carboplatin (chemo) administered along with radiation was ineffective. 
 
 My opinion: Radiation after mastectomy was not required in Pat's case. It caused more discomfort, pain and suffering. Cancer spread to lungs and left breast any way. Radiation caused delay in the administration of right chemo that could have prevented cancer from spreading. Only a handful of chemo can be used along with radiation and carboplatin was not a good choice. There was no input from my onco on further treatment.

Watch for signals - onco has given up hope:  If your medical onco expresses that he will treat the patient to make comfortable and does not have any other plans for preventing cancer spread, he is just waiting for patient to die. It is very difficult to say that he is not concerned but one gets doubt in mind when so many others cancer patients are surviving and your loved ones are not.
 
Why cancer patients still die despite medical advances:  Doctors spend lots of time in learning identifying and treating diseases. They can't be experts in all fields of medicine. It is the drug companies that tell doctors which medicines to use. Drug companies spend lots of resources in research and development of new drugs. In order to make profits, they have to push these drugs that are expensive. Doctors have to prescribe these drugs even though they have horrible side
effects. In some patients they may not even work. When it comes to cancer treatment, in advance and aggressive cases, it is a trial and error method. By the time a drug effect is evaluated, it takes 3-4 week for a single dose and may be 2-3 months to know how effective the drugs are in cancer treatment. Side effects delay further treatment. When there is no right treatment, cancer takes
an upper hand and patient meets his/her ultimate destination - death.
 
You might have heard/red in the newspapers that certain drugs were approved
first but later they have been disapproved because of numerous side effects.
Look what happened to Avastin recently. The system of drug evaluation is not perfect
even in advance countries like Germany, USA and UK. Some drug companies know that their
particular drug is not safe but they still push it.
 
Request:  If someone survived Pat's condition (care givers and others), please
let other suffering from this deadly disease know what worked for you. I am sure
your input will help guide others in choosing the right treatment plans. It
will help me understand which other mistakes we made. Hearing sense is lost to
go so say what you want your loved ones to hear. Thank you all for reading my
story.      God Bless you all.