My SIL was one of the unfortunate ones who developed uterine cancer while taking tamoxifen for stage 1 breast cancer. She told her doctor she could feel something. He didn't react very quickly. Cancer had spread throughout her abdomen and lymph nodes. It was absolutely horrible she had the worst chemo experience trying to save her life. Her suffering during that last year would make any of the strongest of us sick.

We need much better treatment that works.

I agree doctors with their never ending quest to always be right, go apoplectic when you refuse to take the meds or do the treatments they prescribe. I’m sure with some of their inflated egos they are at a loss how to react so they choose to be belittling and threatening. Smooth. Not.

It’s not their body or their lives. They can and should advise but it’s not their call to insist. They just don’t seem to get that. I have a friend who stopped all drugs after she had a reaction - severe- to each one of them. She’s a nurse at St. Jude so it’s not like she isn’t familiar with cancer, etc. BTW she’s 12 years out.

We know and assume the risks of NOT taking the drugs and the havoc that they create if we do. I was fortunate not to have unmanageable side effects from Tamoxifen.

Do what you think is best for you because after all it is all about you.

Diane

I worked in hospitals for 20 years and can only remember a couple of rude doctors. I am 72 so have seen many for medical care and have only stopped going to one because we had a clash of personalities but I wouldn't call her a bad doctor so while I agree with Beesie that rude doctors are out there I too agree that it is a generalization.

My breast surgeon said she was glad that I was so confident about wanting BMX because it made her job easier. My oncologist said that he agreed with me when I said I was stopping chemo after one dose because it caused diverticulitis and could perforate my bowel if I continued. He just said "You gave it a try but I don't want to kill you". He told me to call him if I decided to try a lower dose, different timing schedule or different chemo drugs.

I think doctors have a duty of care where they are required to offer whatever treatment is scientifically proven to work and that they are trained to prescribe. Mine told me the odds of chemo working or not and percentages or odds of the cancer coming back with/without chemo. He also gave me a print out of possible side effects. I could go for it or not. Because I was dealing with an infection from surgery and was waiting for it to heal before deciding on chemo (BMX was August 16th and chemo was Nov 25th) I had a lot of time to decide and would see the oncologist periodically to see how I was doing and to find out whether I decided to go ahead with chemo so they could schedule it. I finally agreed to try it in mid Nov.

It is everyone's personal choice to take a treatment or not so I don't see where the argument comes in. You say "No thank you" and leave or if you know you don't want chemo don't make an appt with a chemo doc. It would be great if there were chemo therapeutic agents with no side effects but so far oncologists have to use what is available. I believe they think some side effects are worth it if it extends your life. I have neuropathy from the one dose but knew it was a possibility. I was not willing to have to have a colostomy if the chemo perforated my bowel. It was my choice and was respected.

You know when you have an appointment with an oncologist that he/she will offer the treatment they are trained to give. A holistic practitioner will offer what they are trained to provide so I don't understand going to see someone who is not offering what you want.

I go to a cancer centre for meditation and other group activities for people affected by cancer and there are many variations of treatment options that the people there are or have experienced. They all knew what they were getting in to and were willing to tolerate. The older women generally choose less treatment. My friend was a young mother when diagnosed at stage 4 and her treatments have been hell but she wants to be around for her daughter.

Anyway, my rant is basically to go to the right place for the treatment you seek. :-) Cancer is a shit disease.

I want to pet his belly but I know that's probably off limits.

Wrenn, I have an Oncologist because I have breast cancer. Not because I plan to go along with all their recommended treatments. Someone has to order the testing (mammogram, ultrasound, MRI, etc.) Someone has to be able to compare the current results with results from the past, giving an opinion if things are improving or getting worse. Their job isn't to try and force their ways upon us, but many of them do by guilting or causing fear. Who told your friend that if she didn't take Chemo, she wouldn't be around for her daughter? I'm just asking because you said that her treatment was hell, but she wanted to be around for her daughter.

My Family Dr. said it to me and so did my Oncologist. “I don't want you to die!" Did they think that I do want to die? Why is it that someone has to almost die from Chemo before their Oncologist agrees with them that they should stop their Chemo treatment? Has anyone here had an Oncologist say, “You don't want to take Radiation/Chemo/Anti-hormone drugs? Oh, ok, no problem! I'll support you either way!" No one has heard that. Oncology is from the Greek word meaning tumor or mass. That's why we have an Oncologist. Because we are dealing with a tumor/mass. Not because we will do whatever they tell us to do. No one should be pushed, scarred, or forced into treatment when they say that they want to try Alternative Medicine. I understand that they feel the need to strongly encourage, but that can be done in a nice, non threatening way. Any resistance shouldn't bring out a “My way or the highway" attitude, leaving the woman to feel stupid for even thinking of a natural option.

I'd love to hear of some exceptions, but only where you didn't do what your Oncologist recommended, and how he still supported you whole heartedly and didn't make you feel you were basically crazy for even thinking of going Alternative.

I'm glad there is a thread where the Alternative Medicine thinkers can share their stories and opinions.

Shoot, read this board too. I said exactly that upthread. My sense now after last week's appointment with my MO is that if I do say no thanks to tamoxifen, he will be fine with that.

I think perhaps sometimes people who get a cancer dx don't realize they don't HAVE to choose the medical or radiation oncologist that they were referred to by their surgeon or whomever did the referral. Perhaps also some people live in a area where there aren't alot of choices for these types of doctors.

I did decide not to have radiation but in case I decided to do it or my cancer returned I did want to make sure I had a doctor I trusted and who wasn't a jerk. (Yep there are a few of those out there) There are some docs who aren't the kind of doctor I'd want to go see.

So I went to the referred radiation oncologist to see if I liked her and see what her plan for me would be. I did not like her at all! So then I think I asked for more names from my surgeons office. I chose to go to one of those doctors to see what his plan would be for me regarding radiation. I really liked him. He was kind and I could tell he really cared about his patients. What a difference that makes, at least to me it does! So if cancer were to ever come back I would have a plan of who to go see for radiation.

I also chose not to take Tamoxifen. My surgeon wanted me to be followed with a medical oncologist even if I wasn't going to take Tamoxifen. I went to the referred Medical Oncologist. He was a kind man who has been in practice over 30 yrs. I think our appointment lasted a hour...maybe longer. He wasn't rushed. Obviously cared about me. He listened to all my concerns and answered my questions. I told him something like: I didn't think there were many studies on women like myself with my grade and stage of IDC regarding tamoxifen really being a huge benefit. He couldn't really refute what I had stated. He said no not alot of studies have been done on stage 1 patients regarding some of the questions I had. I told him I did not want to go on Tamoxifen or have any radiation (my tumor was close to my heart) and he stated he would support my decision as long as I continued to be followed by him. I agreed. I did go see him the first 1.5 yrs. approx.

I have decided to be followed by fewer doctors at this point. But still being followed every 6 mo. I am following up each 6 mo with a ultrasound and blood work once a year with another doctor in my breast surgeons practice who is happy to follow me. My surgeon is too busy to follow me(she is very popular). This doctor will be ordering blood tests and diagnostics and doing my manual breast exams. She is also a DO so more leaning towards less traditional medicine which I really like. She is a great doctor as well. She did my genetic testing counseling prior to surgery.

That is my experience. I am sure not all MO's are kind as stated above with others experiences. But honestly if I had a doctor like that I would 'can' him and move on. I would just continue to go visit MO's until I found one I really liked. They are out there! You just have to search. I realize not everyone lives in a metro area where they have lots of doctors to choose from. Just a suggestion.

Never stop looking until you find the right doctor if you live in a area where you can choose....

Lori, How many oncologists did you see in London (I have family in London) and if you know you won't do chemo why are you seeing oncologists? Your GP or a naturopath can take care of your concerns.

I recently had a punch biopsy on my mastectomy scar to check for recurrence. It was done by a nurse practitioner at the cancer agency. If it is cancer I will go back to my oncologist to see what he has to offer. If he offers a chemo agent that has side effects I am not willing to tolerate I will decline. He will remain my oncologist on the books but I don't have to see him if I am not receiving treatment.

If I have a problem with my teeth but don't want an extraction or whatever the dentist recommends there would be no reason for me to have an appointment with them.

Good chance I am missing the point since I regularly do. Apologies if that is the case.

Hi wrenn, I had an Oncologist in Peterborough and then she sent me to one in Toronto that deals only with breast cancer. The reason that I am remaining with the one in Toronto is so that she can follow all of my tests and let me know if my situation is improving or getting worse. If a new lump shows up, she may suggest a biopsy. If it consistently gets worse, then I will seriously consider a mastectomy, and she will guide me towards that process. My Family Dr. doesn’t specialize in breast cancer. Last month I called the one in Toronto and requested repeat tests. I had them done within 3 weeks. (mammogram, ultrasound, and MRI). All of the results were all very good, thank God!!

Janetanned, I’m glad your experience has gone so well! I know that if stories like yours were more common, I would not have been so afraid to go the Conventional way. I know there’s good and bad stories on both sides of the fence. That’s what makes it so hard to decide what to do. We all aim for “no regrets”!! That’s one thing we all have in common:))

Lori

Precious dog Janetanned.

Diane

Pipers dream, Nice to see you post! When I first joined here I would follow your posts. So glad you are happy.

Just want to say that I would never judge anyone who refuses conventional treatment. What I do mind though is obnoxious promotion, and I think we all know who that poster is. Too bad there's not an ignore poster feature here. Last time I will comment about that.

Interesting discussion going on earlier regarding family histories and possible contributing factors to be so lucky to catch this disease. My sister was diagnosed at age 50, and I at 56. We are both hormone positive. Only prior family history is a maternal Aunt diagnosed at age 70. She was a stage 1 I believe, had LX only and is currently fine and over 80yo. My sister is metastatic and is NED for 5 yrs. now! Me? I'm over 1.5 yrs. and at times markedly miserable. I am blaming the drug. I am choosing to work through it for a little longer--hence, why I'm reading this forum. They used to put hormones in animal feed. My family were mushroom farmers and we spent our childhood summers on the farm where there were natural springs, one of which housed a concrete pool that the family built. We used straight chlorine and skimmers to keep it clean. (No electric filter). I could try and go back and research their farming methods to find out what other chemicals we were exposed to-- even though we were outdoors and not in the growing houses for long periods of time. My grandfather, father, or uncles did not die of any type of cancer. As far as life styles, sister didn't smoke for very long, drinks lightly, while I was a 40 yr. smoker and drank way more the she. We pretty much cancel each other out on that one.

I believe both methods or a combination thereof are possible to bring us to lifelong remission. It seems the jury is still out (on both) and we still have a ways to go to find our individual tick marks, get the remedies proven, so conventional can come up with some easier treatments.

Peace all.

It's interesting to me to read about how we see "treatment". Although I had surgery I always think that I didn't get treatment since I had no radiation or chemo (after one dose). I always felt like the surgery decreased the workload of my immune system to fight off the cancer (and possibly got rid of it all since I am fine 6 years later even though my Metaplastic Triple neg grade 3 is considered "aggressive").

I often feel like I am okay because my immune system didn't have to take on any cancer cells present with tumour removal and the hit on immunity presented by chemo.

I feel like I improved my odds by decreasing stress (an immune zapper) because I sure haven't been following the diet and excercise recommendations. I am an obese sugar addicted inert lump basically. :-)

I would really struggle with what to recommend if my daughter or her daughter got cancer since I do have many friends who did really well with chemo. I wish we had concrete answers about the best path for each and every one of us.

Hi Monetswaterlillies,

I feel exactly like you. I am 52 yrs old and was diagnosed wigh BS having had my surgery on the 18^th July this year.On the 6^th August my consultant informed that I had to take 20mg of tamoxifen daily.I asked why but was basically told 'I must take it or have the cancer recur'.

I was given very little data of this reoccurrence and left feeling 'it was pointless speaking to the consultant'.

Personally I don't want to take tamoxifen or have radiotherapy until I can get more grounded evidence and even then to be honest all of the suggested cures are poisonous to our bodies and fill us with so much rubbish with horrendous side effects.

Plus even taking all the drugs prescribed cannot guarantee that cancer does not appear elsewhere in your body.So either give in to and play Russian roulette with your life by taking prescribed poisons or choose drug-free existence and see what happens!I feel the latter is me.

annoyedwoman:

You didn’t share yr dx as far as stage or grade of yr Br ca. Maybe you didn’t want to share. And that’s ok. That’s the info that helped me make my decision. My cancer was not very aggressive at grade 1. Very slow growing. Tamoxifen didn’t reduce my recurrence chances much. My recurrence chances were very low to begin with. I was stage 1a. But everyone has to make the right choice for them. My choice may not be right for the next person. I am just sharing how I made my choice. I also chose no radiation. My medical oncologist supported my decision. I have diagnostics every 6 mo going forward. Just sharing. We are all here for you. Blessings on your journey going forward.