Suzanne Somers has changed her diagnosis

greta

 I was so riled up that I wanted to respond in an e-mail to her on the program, where they had a place to do it. I was shut down twice. I had just attended a seminar at Memorial Sloan Kettering Center. Dr. Larry Nolan, the director of the Evelyn Lauder Cancer was so positive with all the progress that is being made both in DNA research and trials. He is trying to get the FDA to move faster with some real promising trials. She talked like all chemo was bad and we should just drink her " grass juice" or whatever and all will be fine.She is such a phony. She makes tons of money on books, jewelry, clothing and some sort of cooking thing. A great deal of her facts were incorrect. I tend to believe Dr. Nolan over Suzanne Summers. Thanks for agreeing. Greta.

greta

 I went to Memorial Sloan Kettering Cancer Center's Alternative Medicine Department. The nutritionist I saw was extremely knowledgable.His wife had cancer. He had facts to defend every statement he made. He has gone to many, many proponents of various alternative treatments. He knew my chemo regimine  all that would be good and bad for me, while on it. He said I have active cancer, since I have mets and that changes whether I should take things that are suggested for cancer patients. I had one tumor on my spine that was not responding to chemo. He took me off almost everything on my vitamin etc. list. He had facts to stand behind it all. This tumor has now given me a bit of good news. It has not changed since May. He told me that yes, I could have been feeding it with the vitamin taking. He said of course, if the bad cells are getting healthier, then the cancer cells will gravitate to the healthy cells and get bigger as well.  I certainly would not goto Suzanne Summers if I wanted expert advice on anything anyway. Greta

Denny123

Speaking of total FRAUD-I will bet my left lat boob (that I fought so hard to get) that anomdenet is a total fake.

All she is doing all over the board is promoting SS's garbage.

She knows nothing about BC dx or tx.

When I used to be more active on this site, we got fakes like her/him kicked off.

Bono

Holy Cats!! Drinking increases your risk by 51%, I am totally screwed! Oh well pass the bottle and smile because it does me good!

konakat

Anomdenet has been around for almost 2 years.  Although I may not agree with a lot she posts I do not think she is a fraud.  That she is enthusiastic about alternative treatments does not mean she is a fraud.

There has been a lot of finger-pointing and troll-naming lately (not directed at you Denny) due to opinions presented in an "enthusiastic" way.  This is really not fair. 

Denny123

Oh Ok.

She asked a lot of questions that she should have known the answers to, if she really has BC. 

Nothing teaches one like experience.

I stand corrected, but still worry about the ladies who will make the wrong choices.

hollyann

Ok, I just have to say that it really ticks me off when people come on the Stage 4 thread and tell the girls that it was something they did or drank that caused their cancer!.....SHAME ON YOU!....None of these beautiful ladies did anything to cause their cancer!.......The only thing they are guilty of is being female and having breasts!...They are just like everybody else except their journey is a harder journey.....I have known most of these wonderful ladies since I first started coming to the boards and it really makes me sick that someone would come here and attack one of them.....If any one else comes here to attack these ladies I will personnaly hit the report this post button!..........

Sorry ladies but I just had to tell it like it is.....I looked up Anomdenet....He/she has no biography at all and has been coming here only since February 2008.......

Denny123

About 5 years ago, we had people who came onto this site pretending to be survivors, but were really only trying to promote their books/websites.

They also posted links that we were to click on, and that gave us viruses.

Deja vu

konakat

I worry too about women who might make poor treatment choices.  I get angry at snake oil salesmen that prey on the innocent or desperate.  All I can do is say that I wouldn't be alive today if I didn't get the aggressive treatment with chemo. 

konakat

Thank-you HollyAnn -- for sticking up for us.    And some people wonder why we just want to be left alone sometimes...  Geez, even my oncologist says enjoy some wine, some cake -- have some joy and treats in life!

Denny123

I have always read/heard that 80% of what we eat should be healthy foods.

My other 20% would be probably dark chocolate-but it is a great antioxidant!

Dawnbelle

Look the hell out, Dawn is back.

I need no one to check why I left, I left because I didn't even realize this was a stage IV thread at first. It was about SS & under active topics, I honestly didn't know we weren't allowed in any stage four threads.

SOME of you stage one girls, follow these stage IV girls around hugging them & praying for them like groupies. It is sort of creepy. They don't want your damn pity, they want a place they can talk without effing (((HUGS))) JMHO. I'll catch hell for that...but I know for a FACT some of you are feeling me.

I offended Fitz. I came back despite a few well deserved digs to explain to her that I found no place for questions such as the one that caused the uproar the other day. While I have recon this Wednesday, I will be having a sternum biopsy for uptake found during a bone scan. Wouldn't that just be a hoot if I had belonged here all along? My lump was there for 8 years.

Fitz; Drink your wine, take a Xanax & love your kids. Love & laugh. Please ignore me when I am a douche. My heart is always well meaning, it is my mouth that has a mind of its own. I can promise I would walk to you home if you needed me. There is not a lady here I would not help if I could, even those who have questioned my motives, and asked me to leave the boards. For those of you who PM'd saying I have made you smile or laugh...that brings me joy. Sometimes a simple laugh can mean so very much.

I am off again....I did take a Xanax, news of the bone biopsy has me more stressed over my surgery. Someone pass the damn vodka.

Dawn, out.

hollyann

Anytime Konakat........And no I am NOT one of those sick people who come to the Stage 4 boards just to say (((HUGS))))......I care about all the ladies on these boards equally.....SOme of these women I have known since I started here back in January of 2006.......I used to be Lucy222 but changed to hollyann when I could not get on with Lucy222..........Oh and HUGS to EVERYBODY!.....

NancyD

I'm watching her on Larry King now. A couple of observations:

1.  A radiation oncologist used the term "full body cancer" to her. All the other drs referred to it as metastesized lung cancer. Larry picked up on the term and has used it, obviously, for its "wow" factor.

2. After a biopsy, it was determined that it was NOT cancer. Suzanne thinks she may have been poisoned.

3. The drs on the show are at odds about chemo as a curative treatment. The doctors on Suzanne's side want to follow some alternative protocols and actually have some clinical trials underway.

4. The doctors not on Suzanne's side (two oncologists...one on the ACS board) say they are open to adding complementary treatments in conjunction with standard treatments, and admit there are certain cancers where chemo is not effective (lung; pancreas) 

5. Suzanne says that chemo is, at best, palliative. That eventually, in most cases, the cancer will return and kill the patient if chemo alone is relied upon.

And...it seems to have been EDITED. There was a jump in the tape between a cut to a dr in another location and Larry. About 6 minutes before the end. So take it for what it's worth.

Member_of_the_Club

OK, I didn't watch the show, but it sounds like what she had was the kind of scare many of us have had -- something shows up, there is concern, testing and it turns out to be nothing.  It seems to me a bit unseemly to talk about such trauma when there are folks who have the tests and it actually turns out to be something.  Sometimes I read these accounts of women who have their scares and they find a lump and it turns out to be benign and I think, but thats life.  Thats the typical fare. What isn't typical, is when it turns out to be cancer and you're only 42, or you have three kids and mets.  I'm sorry if this sounds unsympathetic but I had more than one woman tell me when I was going through active treatment about their "similar experience" and it turned out to be a biopsy that proved to be benign.  Not similar!  SS wasn't diagnosed with "full body cancer" if the biopsy was benign.

brewster

Some clarifications/additions to NancyD's summary:

Somers made several statements on Larry King that were highly suspect or inconsistent with standards of care, controlling diagnostic or treatment guidelines/protocols, and commonly accepted practice.  To me, these strongly suggest that Somers is continuing her past trend of embellishing or distorting the truth. 

She states that multiple physicians told her that she in fact had metastatic cancer, based only on the CT scans and without any biopsy.  Every physician is keenly aware that numerous non-cancerous conditions or diseases of the lung and liver can look highly consistent with cancer on imaging studies.

That's why diagnostic guidelines require biopsies for confirmation of cancer, which every physician reads or hears a thousand times.  Even supposing the extremely unlikely claim that four doctors came to Somers and stated that she in fact had pervasive metastatic cancer on the sole basis of a CT scan without confirming through biopsy, no oncologist in the world is going to initiate chemotherapy without a biopsy.

A biopsy is required to observe or evaluate certain characteristics of the tumor cells.  Those characteristics can influence the treatment selected by the oncologist.  No biopsy = no chemo.  So when Somers claims that doctors wanted to immediately begin chemotherapy in advance of a biopsy, which she refused, I have no doubt that she is flat-out lying.

Somers goes on to say that she was scheduled for surgery but didn't understand why, since they had told her this cancer was inoperable. Well I sure as hell can think of a reason why they scheduled her for surgery - to perform a biopsy!  And in fact, Somers said they "took a small piece of my lung" and sent it to the lab. THAT'S CALLED A BIOPSY YOU D-MB B-TCH!  They scheduled her for surgery to do a biopsy, which is exactly what you would expect.  And Somers was positively baffled by this.

She then says they performed a "culture" on the lung tissue that they had removed. WTF? Culturing tissue is only done when some type of infection is suspected or should be ruled-out, whether from bacteria, fungus, or parasites.  One of these physicians HAD to suspect this may not be cancer at some point, either prior to surgery or during the surgery (e.g. based on the visual appearance of the lung tissue).  Again, more evidence suggesting that at least one physician wanted to rule-out other diagnosis, and thus would have been unlikely to hang their hat on the cancer diagnosis in such strong or certain terms.

The physicians who were skeptical of the natural healing/alternative medicine movement repeatedly stated they were open to ANYTHING that could withstand scientific scrutiny and be verified/repeated by scientific methods, but added that little to nothing advocated by Somers has stood up to scientific scrutiny.

Somers and one of the physicians on her side kept referring to the failure of conventional medicine to prevent all cancer deaths as evidence for the broad conclusion that chemotherapy was not effective or was more harmful than helpful, then contradicted themselves by admitting that many cancers respond extremely well to chemotherapy, such as non-Hodgkins lymphoma and testicular cancer (both of which have cure rates approaching 90%), while failing to acknowledge that alternative medicine had absolutely NO success stories that can be verified or repeated.

It was pretty one-sided, really.  The conventional medicine guys making Somers and gang look like misguided crackpots or just liars trying to sell books (take your pick).

LizinKS

Eating healthy and exercise is fine,but I am horrified that Somers continues to do HRT -even if is bio-identical - when her tumor was classfied as estrogen-positive! !!! Maybe she's eight years without recurrent breast cancer-at least any visible signs,but I don't think the hormone therapy is a very good idea. I know my onc told me not to take any OTC products,should I have hot flashes while beginning Arimidex. (I didn't.)

I hated that she would be so insistant and persistant and upsets so many fighting their battles with advanced cancer. I wish Patrick Swayze were alive to confront her! 

Anonymous

I too have been away from the boards for a while.  When I was enjoying NED for almost 4 years I always stopped by the Stage 4 forum because many of us started this journey together and like a crap shoot, some remained NED and some progressed to mets.

I was never made to feel bad coming here to offer support and lend a helping hand to someone who had to face the devastation of being diagnosed stage 4.  Atlhough I will admit I never gave advice or asked how could I prevent becoming one of you.

I have seen many people with DCIS become stage 4 and I have seen many Stage 3 ladies who are still surviving this blasted disease and doing well. 

Persoanlly I am get tired of all the stuff in the news blaming all of us no matter what stage - saying it's our fault we got breast cancer.  My ONC actually told me a glass of red wine would be good for me as the stress and fears that I am facing are far more harmful than a glass of wine.  I had lost my taste for any alcohol and then the other day I read how some ladies were pulling out their wine and I went and bought a bottle.  Ecco Domani Merlot and I savored that glass of wine and it did make me feel better.

I was attracted to this thread because I saw that SS was on Larry King last night and I wanted to watch it so bad, but my husband who is entirely disgusted with anything that talks about cancer turned it off.  Personally I have never been a big fan of hers, even before she got breast cancer and I would never consider her as a role model for me as I go through this journey.  I think her bringing up Farrah Faucet was so unprofessional and out of line, because she fought so hard and is gone now.  It seemed like SS was pointing a finger at her or something. 

Many of you like SS and thats fine with me because I think we all have to face this journey and decide from our hearts what the best treatment is going to be for us - not the person next door.

I think that all of us, all stages have our own fears and enjoy having a discussion with all of you.  What I don't understand is why someone who is not stage 4 would come here and say such awful things to women who are fighting for their lives.  I would never downplay the emotions of someone with DCIS and hope no one will downplay my emotions and being diagnosed stage 4.  It has destroyed my life.

I have done both conventional and alternative treatments.  I think they are all beneficial, but in the end neither one of them prevented me from getting mets.  I pray that it is not true that the big Pharma have a cure but won't use it because of profits, yet I see the insatiable greed from all aspects of healthcare related to cancer.  Hospitals, oncologists, pharmaceutical companies, insurance companies.  It boggles my mind that after working so hard for so many years I am facing poverty because the treatment is so costly.

I personally think SS is a flake and was never good at anything - especially acting.  But you see that is my opinion.  Some of you may have high regards for her and what she has to say and I respect that.

I keep trying to find my place on this Stage 4 forum...

Me 

NancyD

She's on the Weekend Today show this morning on NBC. Coming up soon, the teaser said.

konakat

I just watched her on the Today show.  It annoys me to no end that she just says she had BC and no chemo and has been alive for 10 years.  She neglects to say that early stage you don't often need chemo!!!!!  It's not like she did this brave, risky thing when she followed normal protocol.  That's the biggest gripe I have with her.  I wish someone would call her on this misleading information.

I wonder if she was stage III or IV would she really not have chemo and just let herself die.  Chemo can add years, good years, to your life.  If you don't have mets it's easy to say you'd turn down chemo if you got mets.  When you're actually faced with it, it's a whole new ballgame and way of thinking.  You aren't so flip about QOL and survival.

NancyD

Elizabeth, even as a Stage III, I saw the value of chemo. Even if it only gave me a few more precentage points in my favor, I wanted them.

konakat

Yeah, I'd sure take those extra percentage points!!!

clemson93

I wish the media would stop giving her so much air time.

Susan

Fitztwins

Thank you Dawn. No worries.

Anonymous

SS was misdiagnosed, she even said so.  She did not have "full body lung cancer".  She said what she had but, she said it so quickly that it was hard to hear.  The "Valley Girl" appropriately had Valley Fever disease.

What are the signs and symptoms of valley fever?

About 60% of infected persons have no symptoms. The rest develop flu-like symptoms that can last for a month and tiredness that can sometimes last for longer than a few weeks. A small percentage of infected persons (<1%) can develop disease that spreads outside the lungs to the brain, bone, and skin (disseminated disease). Without proper treatment, valley fever can lead to severe pneumonia, meningitis, and even death.

activern

you guys are real funny! 

pee

I do not care for SS at all.  I think she is dishonest at the very least...she is a media monger and money monger.  I was stage III and did the entire heavy duty chemical and radiation warfare with extra added surgery.  8 years NED and now stage IV.  Blessedly my chemos did put me in remission but not until after they tried to kill me...or at the least make my summer miserable and the hospital my second home. I am on maintenance chemo now and even that did it's best to break me down.  I have had to lessen the dosage, change the amount of times I can receive it and do 3 extra days of infusions to keep me from getting sick and wind up in the hospital.  But, I feel good now, I am living a decent quality of life and have just accepted that every other week I spend 4 days in the Chemo Center being treated.  I am being kept alive!!  And that is what it is all about.  Living.  Herbs and supplements would not be doing this for me.  So, thank you big pharma for all the drugs you have for us and the new ones you are finding.  Do I think you over charge...yes.  Do I wish for your demise...no.  And for all of the dedicated scientist who work everyday to find a cure I thank you from the bottom of my heart.  

kenzie57

 O.K. Maybe SS is a nut, I haven't reasearched her enough to form an educated opinion.  But, I posted the following in the Alt therapy thread and decided to post it here as well....

I seen the SS interview this a.m. with Ann Curry. I just don't understand why we cannot talk about alt therapies or why it was never presented to me as an option. I am going through my own personal hell right now on Ixempra. When I asked my onc what would happen if I quit the chemo, I was told hospice. Why can't the oncs and the alt therapies work together? I feel totally beaten up and abused by chemo and am about done with it. And to think, all the Oncs office could tell me is hospice ... Well it just pisses me off. And the interview with Ann Curry. She cut SS off and, IMHO, tried to make her seem like a nut case. Well, I'm just to the point in my treatment regimine that I might consider a nuttier approach than having the poisions and toxins pumped into my body that makes me feel like chit until it's time to have more pumped in. I just don't understand why the media, the doctors and everyone else cannot be a little more open minded and consider that there might be an alternative to chemo.

Thanks for letting me vent ladies!!!

pitanga

Kenzie, it is true that doctors tend to be very closed to other ways of doing things. On a far lesser scale, I had a recent experience with that. I have developed bursitis in my shoulder and the pain is excruciating. The orthopedist who dx'd it referred me for physical therapy. It did nothing. I decided to try acupuncture and it has been much more helpful. On a return visit to the doctor I mentioned I was doing acupuncture and it seemed to work better. He didnt show the slightest interest. 

On the other hand, their licenses are based on the training they get which does not include alternative treatments. And most alternative treatments have not been studied very carefully, some not at all. So a doctor wold really be sticking his/her neck out to recommend them. If it didnt work the patient could turn around and sue for malpractice.

brewster

>>I just don't understand why the media, the doctors and everyone else cannot be a little more open minded and consider that there might be an alternative to chemo.<<

Because medical science and practice is based on verifiable results that can be repeated to scientific standards.  And in this respect, you can fit the verifiable successes of alt/nat medicine on the back of a postage stamp.  They have lots of "customer testimonials", though! (you ever notice that EVERY so-called guru or advocate of alt/nat healing is selling alt/nat products or books?  Hmmm...)

Conventional medicine cures cancer, not in a handful of poorly documented cases or unverifiable "customer testimonials", but in THOUSANDS of verifiable cases every year with REPEATABLE results.  In cases where cancer cannot be cured, conventional medicine substantially prolongs life in THOUSANDS of verifiable cases every year with REPEATABLE results.

Alt/nat cures NONE and substantially prolongs the life of NONE, that anyone can verify and repeat to any minimal scientific burden.  Oh, except for those handy dandy "customer testimonials"!  Act now!  The first 200 callers will get a free mineral detoxifier!

Its not that conventional medicine isn't open to alt/nat.  They are open to ANYTHING whose benefits can be verified and repeated.  It just so happens that almost all alt/nat therapies DO NOT WORK.  Its not some big closed-minded conspiracy.  Its a MERIT based system.