Learn from our Mistakes -May save your Life

leo107440

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.

lorieg

Leo,

I am so very sorry for your loss.  A piece of my heart tears away everytime I read such a story.  Prayers and peace for you and your family.

Lori

leisaparis

So sorry for your loss. Thank you for sharing. We do need to be each others advocate. Please do not think you made mistakes. You did the best you could with the information you had. That's all any of us can do. Sharing our experiences with each others does help in our own treatment plans. Learning from each other is the best way to have more options. I have learned a lot from this forum. Met so many women and feel like I can tell them anything. Even things I can not tell my own family. I hate seeing them sad and depressed. I don't want this disease to interrupt their lives any more than it has to. I, on the other hand, don't have a choice and I will deal with it my way. (((HUGS))), God Bless, and Thank You once again. Leisa

germangal

Oh, Leo - I just want to reach to give you a big hug!  You sound like you are in so much pain and anguish! Trust that your message will be shared with all that I can get it in front of!  I am a volunteer advocate with the American Cancer Sociey and with the IBC Foundation, and I get so angry when I hear stories like Pat's. There is still so much education to do - both to consumers and healthcare providers. That is the battle I have chosen to undertake, as part of my approach to living with this disease. Please, Leo, remember the 47 years you enjoyed with Pat and let go of this past year. And stay healthy yourself!!!



HUGS

Karen



Diagnosis: 12/7/2006, IBC, Stage IIIb, Grade 2, 4/11 nodes, ER+/PR+, HER2-

lexi4

Dear Leo,

I am so sorry that you have lost your beloved to this horrible disease. Cancer is so evil and sneaky that it outsmarts txs.

Please know that you are in my thoughts and prayers,

Lexi

ibcmets

Leo,  I'm so sorry you had all of this to endure.  You have to do a lot of research & go with your gut feeling on treatments.  Personally, I was devastated when last year I came down with stage IV inflammatory bc because my Mom died of lung cancer at the age of 50 and I watched her go through extremely painful radiation & chemo treatments before she died.  I swore I would not do the same.  My onc convinced me that I had not choice but to go through chemo and said it was much different than 20 years ago.  Being stage IV; he recommended chemo & hormonals but no surgery.  I'm so glad he did.  10 months after chemo & zometa for the bone mets; I'm doing much better and my scans are fairly clean.  I personally do not feel I could have endured radiation & surgery.

May God send blessing upon you and your family for your great loss and thank you for posting about Pat.

Terri

leo107440

Thank you all for reading Pat's story. Now, I know I am not alone who suffered pain and loss of loved ones. Your prayers and hugs gave me lot of encouragement. I lost this battle to save Pat from the deadly cancer. Fighting another battle against autism to help my grandson.

Once again I thank you the present and future readers. May be will hear from some one who had Pat's situation and survived.

Lowrider54

leo...thank you for sharing Pat's story and yours as well.  I am so sorry for your loss. 

I did delcine radiation after the first dx and surgery and chemo 11 years ago.  I was so sick after 8 months of weekly visits, I just physically couldn't take it anymore.  I went 10 years NED until 9 days shy of a year ago - bone mets.  Would the radiation have reduced or eliminated it coming back?  They were going to hit the area near my sternum - the mets is in my spine - none in my sternum with the only 'measurable' lesion being at L3.  I asked - I was node-positive but only just into the 4th node - so it had already started its move - I was 'one node over the line'  but sat between stage II and III - opted for mascetomy over lump removal and did extended chemo, did not do the radiation, and followed with Tamoxifin.  Sure thought that would done it but always wondered - I am more convinced now that radiation would only have made me sicker and the crap would have come back anyway.  Pat's story helped me come to terms with that...thank you.

I am treating with hormonals, thankfully not triple neg and so far, only on the second of many of those.  I have confidence in where I am - the breast center I have been going to for years and its affiliated onocology - I am treated with a team that works together and communicates.  Your story has me a bit more aware of what to be on the lookout for and I thank you. 

Hugs to you and your family...LowRider