Alternative Treatment

luv_gardening

Excellent Susie.   

NattyOnFrostyLake

Excellent Susie! Wouldn't want you complaining to Steve and the girls that you are attacked every time you can't answer a question. Good for you!

See you in six months

suzieq60

What question did I not answer???????????

I haven't been on this thread pushing chemo - only at least surgery. Anyone who chose not to have surgery would be really risking their life.

digger

Okay, I'll be honest, Patty, your comment to susie about her husband and girls was a little creepy....

Kaara

dunesleeper:  Welcome to the thread!  I can see you are on the right track in trying to find the best benefit to you in fighting this disease.  Sometimes this thread gets heated and confrontational, but that is because everyone is so passionate about their beliefs.  In the end it gets sorted out and the thread continues to educate.

Joy:  I had the CTC test right after I finished my surgery and even before my Onco Type score was available.  I had negative (0) CTC, so that gave me confidence that the disease had not spread and I was free to fight back with my complementary therapies.  My ND said there could be some micro cells that can't be detected, but if the body is healthy, the immune system takes care of those.  Because I didn't have either rads or chemo, I am taking tamoxifen as a recurrence preventitive along with my diet and supplementation program.  I feel comfortable that I am making the right choices for me.

I will say one thing about bc.  I think that doing nothing is never an option.  One must do their research and choose treatment options that they are comfortable with. 

abigail48

I found the favorite sites a few days ago.  I tried chilipaddi first, (my spelling expertise) & found no hits for it either.  the site I looked for was peolele who use only alternatives, not this one or the other which mentions alternatives.

I get a similar take as the new poster to you jlw.  somtime within the last few months I found a statistic which mentions that 1/3 of allopaths when they get a life threatening illness refuse the therapies they've suggested for their own patients.

Kaara

abigail:  I have heard that conv docs sometimes refuse their own therapy, but don't know that to be true.  My MO the other day examined my breasts and commented that he could tell that I hadn't done rads because they were in such good condition.   He was smiling when he said it, so I assumed that he favored my decision not to do them for my low grade cancer.  He prescribed the tamoxifen which he said was important to take.

AnneW

Patty has been sounding snarky to me, too, digger, but I won't report because perhaps Susie knows her and she really means well??

exbrnxgrl

Abigail,

Search member names under chillipadi. She does indeed exist as does her story.

Ladies

I know there is a lot of passion here but I am very disappointed by the sniping, sarcasm, questioning of others intelligence, snarkiness and lack of civility. We all deserve to be able to comment without enduring this type of behavior.

Caryn

painterly

 Susie mentioned above that:

It is well known that lower grade cancers do not respond to chemo.

Anyone know where I can find a link to studies on this so I can take it to my onc. He scared me into chemo  by saying if I chose not to do chemo and it comes back I cannot be treated. (My tumour was 7mm with a possibility of an ITC in the node which was tested twice but remained inconclusive).

Thanks.

Kaara

painterly:  Did you have the oncotype test done?  That should tell you whether you would benefit from chemo or not.  I would not do chemo until I had the results of that score, regardless of what the MO says.  We have these tests to help us determine what to do, and I don't understand why some doctors still resist them.  When I asked for the test to show if I metabolized tamoxifen, my MO refused, saying it wasn't reliable.  The only reason I didn't give him a fight was because I knew I wasn't going to take an Al anyway, and therefore tamox was my only choice, so I'm taking it.

Anonymous

Painterly, I am freaking out too, I keep seeing this mentioned on this site with NO backup whatsoever.  Some people here talk and offer advice as if they were doctors.  This should not be tolerated.

Kaara: No oncotype test was done for me  

Kaara

Maud:  I believe that's what the oncotype test is for...to determine whether you would benefit from chemo or not.  It's not a guessing game.  I have seen people on the site with very low grade tumors who ended up with a very high oncotype score which would indicate chemo was needed in their case.

Mine was low, so I was able to forego chemo.  In all probability, most of the low grade tumors don't respond to chemo, but once in a while, chemo is needed and that is why the test is important.  Everyone should insist on it...they weren't going to do it on me and I said why not?  I want to know everything about my bc so I will know how to fight it. 

luv_gardening

Kaara, We don't get offered these tests in Australia, and the more accurate test wasn't available when I had my diagnosis anyway.  You were so lucky to have such a good result.  My lobular type of cancer is a slow one so I tell myself I have ten years at least before it might start to wake up and by then I'm hoping for better treatments or even, dare I say it, a cure.  I take Tamoxifen too but I'm not sure if that has caused depression, though I feel a lot better this week.

I agree the immune system can work if there are no active tumours hijacking it.  If there are cancer stem cells hiding then they are the ones that can't be reached so keeping our immune system in good shape is important to stop any potential new growths.  That's how I understand it with everything I've learnt, though there are always new discoveries.  It's great to be part of a forum where others are also looking out for new information and research.

Anonymous

Sorry Kaara, I edited my post to add that doc did not order oncotype test for me. I read on this very site that they only do so when node negative. I don't even know if that is accurate given all the myths being propagated here.

Kaara

Joy:  Here's an off track question and I probably should have sent it in a PM, but what is the best time to visit Australia and New Zealand?  We want to plan a cruise next year and I know the seasons are different.

painterly

I was told onco type test not done on small tumours.

I was treated in Canada and I believe onco not routinely done. Last year, I read in the paper in Montreal  that a woman insisted on an oncotest but had to send the tissue to the U.S. since Canada did not do testing. But she was relieved/thrilled I should say, when the result showed no chemo required.

abigail48

someone here said that after being on tamoxifen for some years she looked like an 80 year old woman with osteoporosis instead of a 50 year old woman without.

abigail48

nope that didn't work either.  perhaps she's deleted her story

painterly

I understood tamoxifen was better on the bones and that bones actually build tissue on it. Tamox was recommended for me when the AI's failed me.

luv_gardening

Painterly, if you refuse chemo and it comes back you should be offered chemo. Unless it's an insurance matter, I have no idea about insurance in America. Chemo can only be used once so you would have a larger choice of chemo's.  Seriously, do you believe you'd have mets and not be offered chemo if appropriate? That would be unethical.

It's been discussed quite a bit on BCO that lower grade BC doesn't respond well to chemo.  It comes up in many studies as an acknowledged fact and I can look for a link if you'd like one but it will be on my old computer from when I was deciding whether to have chemo myself.  Maybe someone else has a link as it's important for you to read it yourself and not take the word of forum members.

Anonymous

"Chemo can only be used once ..."  IS THAT ANOTHER MYTH ?

PLEASE LADIES, BACK UP YOUR STATEMENTS !!!!!!!!!!!!!!!!!!!!! 

Kaara

Treating small grade tumors with high grade rads and chemo the same as you would for a large higher grade tumor never made any sense to me.  Thank goodness I had a low oncotype score because I would have had a difficult time accepting chemo for my type of bc dx.  I refused rads because they wanted to give me the WBR instead of the targeted one that I wanted.  Rads are only to treat the breast that had the cancer, so if it comes back on me, which I doubt it will, I still have my treatment options of mx, lumpectomy, rads and so forth.  If I had rads on the first go round, there is still no guarantee it wouldn't have recurred and then I would no longer have that option, only the mx, so I rolled the dice.  Only time will tell.

painterly

Joy: 

Seriously, do you believe you'd have mets and not be offered chemo if appropriate? That would be unethical.

I agree with you but I sure couldn't think in those terms when I was sitting in front of the chemo guy shaking in my boots with terror.

We don't have an issue with insurance in Canada......treatment for all....hence the big taxes we pay.

Kaara

abigail:  I was told that tamoxifen is the lesser of the two evils with regard to taking anti hormone therapy, yet some women do better on the Al's.  I just didn't want the bone and heart issues that sometimes come with taking the Al's.  Tamox works better for me because I've had a complete hysterectomy and I don't have to deal with the uterine issues that tamox might cause, and it does not destroy bones the way Al's do.  I would refuse to take any of the bone density meds because they have their own set of SE's.

If the use of tamox starts to age me so quickly that I can tell it's happening, I can assure you that it will no longer be part of my daily routine.  I'm taking only 1/2 the recommended dose, mainly because I don't understand why someone with my low grade tumor would need the same dose of tamoxifen as someone with metastatic bc.  I'm not playing doctor and would not recommend this course of treatment for anyone...it's just what I do because IMHO it feels right to me. 

Anonymous

Kaara, you sound so wise !  wish I had you with me when I was being scared by my hysterical docs 

Really, you are so educated about your situation, you could offer your services (sound advice) as a cancer patient advocate, a second career, you know ?

Kaara

Maud:  Thanks for the compliment, but I always add to all of my posts that I'm just doing what feels right for me.  Everyone has to be their own advocate, research their treatment options, and then choose based on their own personal feelings about how they can handle risk.  I could tolerate a little more risk to have better quality of life.  If I were twenty or thirty years younger, I might have made a completely different decision.

luv_gardening

Abigail, I sent you a couple of links in a PM.  I hope they work for you.

abigail48

once again what are these chemicals?  chemo therapy?  I wouldn't take anything which didn't have a real name.  real name:  "lipitor"  for instance isn't a real name.  not is tamoxofen for that matter.

luv_gardening

Kaara, Australia is nearly as big as the main part of America so we have many different climates.  We don't have twisters, only occasional cyclones (hurricanes) in the hotter areas up north. If you don't like cold then avoid winter from June to August, and if you don't like too much heat then you could avoid summer, from December to February.  New Zealand has a cooler climate so summer might be nice there though I've never been there.