Why I chose conventional treatment

Kicks

'Black Salve'/Ichthanol is a very old drawing salve. It can be bought in pharnacies today. Basically - it is just pine tar and iodine. I havd used it many times

exbrnxgrl

Carol used Indonesian black salve or cansema. This stuff is an escharotic and is very corrosive to both cancer and healthy skin cells. I remember black drawing salve from when I was a child, but I think this is probably a different substance. I'll check it out.

exbrnxgrl

Black drawing salve, commonly avaiable in drug stores, is indeed different than the black salve purported to treat cancer. Drawing salve's main ingredient is ichthammol, which is very different than cansema.

Kicks

:I'll be interested in what you find.

exbrnxgrl

see post above your last post:)

exbrnxgrl

Since we're resurrecting the Steve Jobs post-mortem , here is a brief but concise article on his regrets. The source is Walter Issacson, who was the author of the Jobs biography, which was sanctioned by Jobs and for which the author spent a great deal of time interviewing him. One thing that is very clear is that Jobs had a high likelihood of surviving if he had had surgery at the outset. Unlike other forms of pancreatic cancer, the type he had is considered highly curable. At least this much is not anecdotal, but from Mr. Jobs himself.

Edit: Uh, it would be nice to link the article...

http://www.forbes.com/sites/alicegwalton/2011/10/2...

wrenn

Ok, not anecdotal. So will this ONE case convince newbies on how to go? One case...one anecdote...get the connection?

As I have said i have no pony in the race but there is often a sanctimonious tone to "conventional" threads and the intelligent women not making the same choices you have made might feel somewhat disrespected. They don't actually need the information because they can think for themselves but it would be nice if newbies felt free to express themselves without being looked down on.

Anyway, the topic is exhausting and so repetitive. Have a lovely evening all. :-)

exbrnxgrl

circular arguments do seem to be prevalent on many discussion boards

DivineMrsM

Because of his wealth, intelligence and connections, Steve Jobs had access to the very best alternative medicine available; he had every resource available. Imagine if it had helped him, how that might have changed the perception of alternative methods to treat cancer.

My son was a big Steve Jobs fan. I read Jobs' biography. It still breaks my heart that he is no longer here because of effing cancer. He was such a visionary.

Conventional medicine works for many. In the late 1970s, my brother was diagnosed with terminal testicular cancer that had traveled to his stomach and throat. They gave him a year to live. He had chemo, rads and surgery. It was a very, very rough time for him. He was 18. He's now in his 50s.

I knew I could get through it because my brother did it years before me.

Lily55

thank you Wrenn,

Pancreatic cancer behaves very differently to breast cancer, and black salve is one of the most way out most discredited alternative "treatments" , why are extremes always dredged up? Neither seem relevant to breast cancer treatment decisions.

exbrnxgrl

I think the black salve issue was brought up because many on the alt threads were huge cheerleaders for it's use by this particular member. They encouraged her to photograph her progress and document what an amazing "cure" this was so she could prove the conventional doctors wrong. I really do wish there was a magic bullet, but in the world of anything goes, encouraging things like this takes away from any credibility that unproven tx may have.

Yes, pancreatic cancer is different than bc, but the mindset that led Mr. Jobs to make his early decisions is shared by many who eschew conventional tx.

caralex

Very thoughtful post, Labelle. Thank you.

C.

vlnrph

Just back on line after a couple weeks break which means I am catching up - was a little worried about LaBelle declining chemo with an affected lymph node even though her small (compared to some cases) ILC was low grade but then, checking her posts on another thread was relieved to see she had OncoType done and scored 11: certainly a helpful bit of information in making some of these decisions. Best wishes during rads and enjoy a quick return to full health! Truly sorry to learn of your mother's situation, still so recent.

Like our original poster, I am about 4 years from diagnosis but continue to be drawn into this community in an effort to support & help others. Special thanks to our Deanna, Selena, edwards, exbronxgirl and others for their contributions over the years.

Traveltext

I'm a guy who ddidn't hesitate to take the conventional medical route when I was diagnosed with BC since the cancer was moving towards an inflamatory stage. Fortunately I had no SEs from any of the treatments and am now on the standard course of Tamoxifen. So far, so good.

But I have a friend in Vietnam who's uncle was diagnosed with incurable lung cancer and was told there was nothing that could be done for him medically. He was expected to die within months. That was a year ago and the alternative treatment he chose was papaya leaf tea, a commonly taken anti-cancer prophylactic in Vietnam. So far, so good.

This experiment is obviously in its early days.

labelle

While oncotype testing is presently used primarily in women w node negative status, the oncological breast surgeon at UT and now (consult today) the oncologist at Vanderbilt agree that having a small amount of lymph node involvement does not really change anything for me as my grade is so low and tumor so small (7mm per final pathology) and both are good with going with the oncotype test results in my case. Both were really, really surprised to find anything at all in my nodes and I certainly wasn't prepared for it either.

In the end refusing chemo wasn't really a hard choice. No one on my healthcare team was actually recommending it-I thought the oncologist might w node involvement, but we didn't spend hardly any time even talking about it today as I'm finding my oncologist to be in favor of conservative treatment. No need to drop an atomic bomb on a gang of street thugs (and my cancer is the thuggy type). Moving on to radiation (with lymph node involvement I've pretty much decided that has to happen, w/o I wasn't sure I'd do that either) ovarian removal and maybe tamoxifen or more likely AI therapy (or not, still up in the air about any hormone therapy other than ovarian removal).

I'm finding one step at a time is best. Surgery, done. Appointment w radiologist scheduled. Chemo was nixed and not going to happen per today's onco appointment. Decision to move on to surgical ovarian removal finalized and appointment w my gyno made. Discussion of Tam v AI to happen and choice to be made in Feb. at my next oncologist appt, after radiation and ovarian removal. I think that's enough to deal with for now. Getting thru radiation and the oopherectomy (not really a big deal surgically speaking/ a laprascopic surgury, but still!) are my focus for now. Plenty of time to decide about hormone therapy in the future. I've found this whole diagnosis w BC to be overwhelming. Planning my treatment one step at a time is I think better than trying to get the whole thing mapped out at once, which really was getting me quite upset.

exbrnxgrl

labelle,

Glad you've got a plan in place and that chemo won't be required. You didn't refuse chemo, because it wasn't recommended and if you had insisted on it, I imagine that's where you would have had a disagreement with your mo. There actually have been women who have demanded chemo even when their mo's did not recommend it. I'm with your mo in that more is not always better. Have a good holiday.

Caryn

labelle

Well, she'd previously said no chemo IF there was no node involvement, but in the end I think smaller tumor size than we'd expected and very limited node involvement (one of 4 sentinel nodes, zero of 8 aux nodes sampled) plus my own already expressed reluctance re: chemo, made her decide it wasn't a good plan for me even with node involvement. I'm finding her very informative and she's said she will support whatever decisions I make about my treatment. I'm glad I got such a good fit w my oncologist. We'll see what I think of the radiologist (next step) and as I'm having my reg gyno do the other surgery (and already know I like her, LOL) I'm on my way, I guess.

Onco and I did discuss other less conventional treatments. I changed to a Paleo (no sugar, gluten or processed foods) diet in March (before BC diagnosis) , lost 20 lbs, was feeling great, got my vitamin D levels where I want them, ditto for thyroid after 4 years of dinking around, all of which the onco approves of, including continued Paleo and vitamin supplements. Says I'm going into this thing in great shape, am very healthy, etc. except for that pesky BC thing of course!

I definitely can't imagine demanding chemo, but I suppose some people do. People do seem to want to tackle this thing in a variety of ways from do EVERYTHING even if it about kills me to let's do almost nothing. Odd, isn't it? Of course as I'm finding out, breast cancer is not really just one disease, so many stages and types, things to consider so it's good we've got some real options in the treatment dept. but also frustrating since they can't just say, "Okay, do x y and z and you'll all be cured." No one size fits all.

pupmom

Oncotype DX protocol is that those who are ER+, and have 0-3 positive nodes can get the Oncotype DX test. I had 2 positive nodes, was approved for the test, and did not have chemo. My profile indicated that my life expectancy was HIGHER WITHOUT CHEMO.

labelle

I had my oncotype test done prior to surgery, using material from stereoscopic biopsy. I was told at that time, that they only order the test for node negative or those they believe will be node negative, but I'm definitely glad I had it done. Having a score of 11 I think helped the oncologist to determine, despite a positive node, chemo wasn't going to be of much or any use in my case, the potential side effect outweigh the potential benefits for me.

exbrnxgrl

Yes, yorkiemom is correct regarding oncotype DX being used with ER+ women who have limited node involvement. This was not the case when the test first came out but has been so for set least a couple of years.