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Old 01-08-2006, 10:08 PM   #1
al from Canada
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horror story

Hello folks,
I rarely re-post previous posts but in light of the number of recent "inductees", I feel that this is warranted. I have a private pilots licence and we have a credo: learn from other people's mistakes because you will never live long enough to make them all yourself". This is a classic case in point:

This is probably not an all to uncommon tragedy, (this was the first time I have visited another support board for about 1 year because this one is obviously the best and who has the time these days, but just decided to snoop. This post summarizes EVERYTHING we have all been preaching about overseeing your tx plan; being an active partner in your medical recovery; but here's what can happen if you let your guard down with devastating results!! ) Sorry to bore those who have read it the first time around.

"My sister, who recently turned 40, has just died of breast cancer.

My sister was diagnosed with breat cancer in 1998 when she was 33, and had what we thought at the time was a successful mastectomy. Because she had 6 positive lymph nodes, she underwent local radiotherapy on the site of the scar, and systemic chemo with LMF to clean up any left over cancer cells.

She had oestrogen postive, HER2Neu negative, high grade Invasive Duct Carcinoma.

She was placed on anti-oestrogen pills since her surgery.

We thought she was fine until 2002 when she the cancer appeared in her hips and bones.

My sister never wanted to confront her cancer head on, and this lead to our first monumental mistake. Since her adjuvant chemo, her doctor said that her cancer was a thing of the past.

Unfortunately, this meant no screening, no annual scans, no check-ups, no follow-ups! He cancer re-appeared in 2002, however could probably have been detected in 2000 or 2001. When we finally realised what her 2 years of back pain were, the cancer was very advanced in her spine/hip.

She underwent radiotherapy on her spine/hip, had 3 cycles of A/C, and started on Zometa.

The radiotherapy stopped the pain pretty quickly, and the A/C made her feel good in a short space of time.

However, it didn't last long. The zometa gave her osteonecrosis of the jaw, so the infusions were stopped.

The cancer kept on progessring in her bones, and eventually made it into her lungs, her liver, and her scalp.

She went on Taxol, and after almost dying from this chemo, nothing improved. She was getting worse.

I tried to convince her oncologist to stop the Taxol as it was obviously not working, and was causing too many complications.

I wanted my sister to move onto Navilbine as it was less toxic, had less side-effects, and would at least be no worse than the Taxol. Her oncologist said No!

This was probably our Biggest mistake.

One week before my sister died, the oncologist agreed that the Taxol was not working.

By this stage, the cancer had progressed into my sister's eye, her other breast, her ovaries, her intestines, and had engulfed her lungs to such an extent, that she could not breath without oxygen.

She was in and out of hospital, and she was now too weak to try another IV chemo.

She was placed on Xeloda, but was given the wrong dose (one third of the actual dose that she required).

By the time we found this out, she was one day away from death.

She finally got the right dose of Xeloda, and died 12 hours later.

She died due to cardiac arrest. Apparently, the numerous lung mets put such stress on the heart, that it simply failed.

I am racked with guilt, because we let her oncologist push us around.

I can't get over the feeling that more could have been done, had we had an oncologist that listened, cared, and didn't give up on my sister at the drop of a hat.

We made many many mistakes, by simply accepting the advise of the doctor."


Please Stay Vigilant,
Al
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Old 01-08-2006, 10:21 PM   #2
StephN
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Talking Not only cancer

We have a friend with a bad heart - his arteries keep clogging up. His cardiologist basically "dusted him off the table" in Nov. Our friend persisted and found another doc who DID help him. He has had two stents put in during the past 3 weeks. He feels much better and is back to work!!
He may have died by now if he had not sought another opinion.

I am sure we all know someone who was given up on, who still had some fight left.
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Old 01-09-2006, 07:45 AM   #3
anne
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Hi Al,

I have got to agree that this doesn't surprise me. I feel that the oncs in general are very hind-sighted. I don't know why this is. Even my mom's onc was v. hesitant about any vaccine trial we want to try and he refused to run Her2 Serum Bayer Test. We need to push this idea to the frontlines. WIth all these breast cancer foundations out there, this is something that has never been addressed by anyone else but is all too common.
Thanks for sharing.
Anne
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Old 01-09-2006, 08:19 AM   #4
RobinP
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Thumbs up

Thanks for reminding everyone here to be your own best advocate. Unfortunately, physicians often treat cancer patients as second class citizens, fearing their illness, ignorant of treatment options, resulting in neglect of appropriate medical interventions. However, that does not preclude those that have the disease from receiving the best care possible if you want it, you just have to be more aggressive in your approach by becoming your own patient advocate and understanding your disease by continual self education and by pushing your doctors to order the right medications. I truly believe that your willingness to be your own patient advocate may very well determine your span from here to eternity. May we all be ever vigilant.

Al, I hope you don't carry that guilt about your sister with you. Instead, realize you can now help others via of that tradegy and that's exactly what you are doing via of this post.
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Old 01-09-2006, 10:03 AM   #5
AlaskaAngel
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The Importance of Taking Responsibility for Your Health

I don't think the family who suffered in Al's post was actually Al's family, but like Robin I do think his point is key to living longer and better for people who are chronically ill. My docs are some of the best but they can't and won't see some of the things that are too new or too unique about my personal situation. The more I learn, the more questions I ask, and the more I push, the better my treatment gets.
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Old 01-09-2006, 10:41 AM   #6
Ginagce
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Thanks Al. A good lesson for all of us.

ginagce
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Old 01-09-2006, 10:50 AM   #7
al from Canada
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Dear Ribin,

Not my sister but thanks anyway
Al
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