Still wonder..but what if

Some of you might remember but last Sept 09 my wife Heather 36 passed away. She had a TNBC diag in Feb 2008 with only one lump about 2-3 cm, they scanned the rest of her over the next few visits and was clean.  I strongly believe that if things were left alone in her case, never biopsied she would still be alive today.  As if the gates are opened and the tumor cells are released into the body.  I know the Dr's believe thier magic juices can kill but not in the case with her tumor type. She was tested for the BRCA early on the next month Mar 08 and negative.  I know hindsight is 20/20 and I am speaking probably out of emotion.  It just bothers me and will get over it.  Just a thought for some of you just diagnosed maybe to contemplate things a bit.  Heather probably was given every concoction of chemo mentioned on these forums and nothing worked. 18 months from biopsy gone.... Im doing ok, just venting.

Edited by cdenunzio - Jul 11 2010 at 12:44pm

Cdenunzio,

Hi,

God Bless you, Cdenunzio, and give you healing.

Cdenunzio,

It is perfectly normal for you to ask "what if". We all do it at times. I am so sorry about Heather, she was a beautiful person and too young to die. Thank you for sharing your feelings with us. God Bless

Lillie

Dear CD---

I completely relate to your "what if" scenario.  I ask myself the same thing with regard to my sweet mom, and for that matter, to other losses I have witnessed or been a part of.

My approach to this world of cancer is completely dispassionate.  I don't want the feel good aphorisms, I want the truth and the facts, so please forgive me if I write harshly.

It is a good question you pose.  When your dear wife entered the medical paradigm, did their potions, surgery, and high doses of radiation, repeatedly, make things worse?  Not only that, did they leave critical issues forgotten?

In my opinion, this happens.  But part of the reason is that we lay down and don't participate in the process, asking questions.  There is a good reason for this---they discourage it and we are frightened.  We know nothing of medicine or cancer when we walk in those doors.  Even doctors who have cancer are overwhelmed.

It is unlikely that the excision surgery spread Heather's tumor.  Cancer surgeons are trained to respect the cell to cell risks--even excising the tracks left by biopsy core needles for this reason.  They don't mess around.  But it is now known that morphine given after surgery depresses the natural killer cells.  The NK cells are cancer sentinels--we need them exactly when they are being suppressed.  But here is the shocking state of the art.  When I took my independently ordered immune study lab results to my first oncologist, who by the way is one of the top TNBC researchers in the country, he/she looked at my numbers and said to my face "the immune system has nothing to do with breast cancer".   I said "What?  Are you serious?".  "Yes, the immune system doesn't seem to work well in the breast".  This contradicts every reasonable conclusion being made in cancer research today.  Why did he/she say this?  Is he/she just stupid?  No, of course not.  He/she just wanted me to stop being interested in my disease, to shut up and take my medicine.   He/she doesn't have time for this.  This is a common scenario, one that many of us run into.

The other issue you mentioned was whether the chemotherapy besides being ineffective, did it make things worse?  It is entirely possible.  Aside from the reversible collateral damage that chemo does to the body, there are simply subtypes of tnbc that are "nuclear powered"; in other words, a body weakened by chemo or not, the cancer cell type is very strong and adaptable.   One type is the cancer stem cell, and tnbc tends to have this in abundance.  But what researchers are learning is that these cancer stem cells can be unaffected by chemo.  Cancer stem cells divide slowly and chemo targets fast cell division.  This is just one scenario.  There are many.  Another scenario is the problem with microtentacles.  One chemo agent, I won't name it, will cause microtentacles to become longer and more active.  The microtentacles make it possible for the dislodged cancer cell to embed in new areas, especially the blood vessels.   Without the long tentacles, the cancer cell would be pushed through the blood vessel, fragment and die.  This same agent will cause tumor shrinkage but cause circulating tumor cells to skyrocket in numbers.  Fortunately, they give this chemo agent as more of a "mop up" therapy, after most if not all of the cancer cells have been eradicated.  It has it's place, properly applied, but for some, it is problematic to say the least.

As for the question I pose, did they leave critical things forgotten?  Well, yes they do.  In my extremely harsh opinion, the neglect that some oncologists do with regard to vitamin D testing and raising vitamin D levels borders on criminal negligence.  I am allowed to say that.  It is how I feel.  Not only do most oncologists NEVER test vitamin D levels, they don't insist on levels above 30ng per ml, they prescribe vitamin D2, a biologically inactive and cheap form of D to raise their patient's level, they don't address D3 resistance in cancer patients, and they don't tell patients that high levels of serum D3 MAKE CHEMO WORK BETTER.  They know this.  They have known this for many years, yet they are mostly silent.

Again, my apologies for any abrasive language and opinions.  I lose my "editor" when I write about this subject.

I hope you see that your coming back here and venting your concerns was not only healthy and healing, but a wonderful testament to your love for Heather.  You have given a tiny, nagging voice inside a place to express itself.  It is important and I thank you.

All my best,
Bliss  

MsBliss - Interesting reading.  I agree that doctors don't take vitamin D deficiencies seriously.  I have hypertriglyceridemia (high fats in blood), two years ago my triglycercides were 2400 (normal is 150) and it cause pancreatitis and furthermore caused ARDS (lung failure).  I almost did not make it (40% don’t)!  My blood is closely monitored and late last year my levels went from 300 to 1800 so there was great concern and I had massive blood work and all they found was that my vitamin D was 10.  They advised me to take D3.  Since the vitamin D deficiency had nothing to do with my condition, they paid no mind to it.  I asked them if I was at risk of cancer and no one seemed to care, I asked my doctor, I asked my OB, I asked my pulmonologist, no one cared.  Months later I found my lump and here I am.  They still don’t take it seriously.  I asked to have it tested before my last chemo treatment last week, I asked today since I was there getting  my blood counts and she told me she didn't see any test for D.  WTF!!!  How many doctors do I need to keep asking to test it and they don't!  I have no clue where it is at.  It makes me so angry.  Why don't they see the importance of it???  I keep taking my D daily praying that when I finally get it tested that they are good.  I'm thinking of doing it myself, saw a post on here about it.

Cigi,

You can order the Vit D3 in-home test kit.  Here's the link:

http://www.zrtlab.com/vitamindcouncil/

Donna

Dear Donna,

Yes, I know what you mean about learning about the morphine connection.  As cancer patients we are already on notice that something is amiss with our immune cells, we don't need to add to the problem!  But we are likely all in the same boat, because the use of morphine during and after surgery is so common.  We can ask for the use of a non-morphine alternatives, and / or  use immune boosting supplements and maybe include the short term use of mistletoe because at least it couldn't hurt and it may help.  Also, get out of the hospital as quickly as you can.  Staying in the hospital for extended periods further disrupts the immune system.  Must be those gowns they make us wear!

All my best,
Bliss

Thanks Pam.  I ask all my doctors to test it and I see a lot of them and I'm still waiting.  I'm a very nice, polite and patient person so maybe they're just not taking me serious.  I think I need to be more demanding and make it very clear that I'm tired of waiting.  My onc is really going to hear from me because she said they would test.