Being a Breast Cancer Survivor without chemo/radiation

Hi. I am brand new here---just found this site tonight. I was diagnosed in May of 2014: Stage 3B breast cancer, aggressive, invasive. In Aug. 2014 I had a bilateral mastectomy without reconstruction. I developed PMPS and it continues to try to drive me crazy. By July of 2015 I had tons of bone mets, ribs, spine, breastbone,etc.

I haven't done radiation or IV chemo. I tried Arimidex for a few months and stopped due to WAY too many hot flashes. I had 2-3 shots of Xgeva and Faslodex but stopped them both as well due to SE's, actual and potential. I am doing some supplements but am not interested in any more standard medical treatments: they were all discontinued in 2015. My scans seem to be showing some improvements!

I am very interested in finding others who are going the "stage 4, no treatment" route with me. I don't know if I'll be able to keep on keeping on with this , but I am pretty stubborn and refuse to do anything that makes me feel worse than I already do!

I read your post and I wonder whether you would be willing to discuss whether you followed a specific diet? I have been doing research on diet and breast cancer and there is much they Just don't know. I hope to get a diet regimen that works to at least help me to feel better. 

it is my understanding that a PET scan can spot masses, but cannot assure us that there are no cancer cells in the body. Wouldn't it be great if there was a way to know whether we actually had cancer cells hiding in our body?  to my knowledge, there is no such test. That is why deciding on treatment is really a roll of the dice most times. 

I hope that you continue to feel well and that there is no evidence of cancer in your scans. 

im so glad you had the PET scan. i am very keen on diet and nutrition, i also think there are people out there suffering from misinterpretation of tests, or lack of follow up tests.... maybe the other tests you had previously were "over interpreted."

i certainly feel and know from reading how helpful diet and supplements can be. i had the advice of very knowledgable naturopaths about which supplements to take/not take during my stage 2b breat cancer (postive for Her-2, est, and progest) with a large postive lymph node in my armpit/axial area.

i did have the chemo, bilat mastectomy and radiation, however i was not sick or debilitated and feel this is from the supplements and vit c drips i had, aside from the antinausea med i had which was only to help with the first 2 days of chemo treatments.

I got a lot of help from some books:

dr adam macleod "integrative cancer care",

dr bernie siegle "Love medicine and Miracles",

Dr. Kelly Turner "Spontaneous Remission",

and a book called "Anticancer, a new way of life, by Dr. David Servan-Schrieiber.

I had a heating treatment which i need to look up, more popular in Europe and Germany, through Dr. Adam MacLeod, Vancouver, which heated the tumor area of my breast. The mass actually got bigger and harder for the last 3 months of my "neoadjuvant" chemo before the surgery.

i got worried, and managed to get a Pet scan, MRI of breast, repeat U.S., and repeat mammogram. the results werent available until after my bilateral mastectomy, but they showed i had a "pathological complete remission" or "PCR." the histology of the breasts and lymph node showed all scar tissue and inflammation. I am glad to have had the surgery, but its interesting and a huge relief to see the cancer had resolved before my surgery and to have those updated tests.

I like to think that the diet , supplements, Vit C drips and the heat treatment all worked synergistically with the chemo. They certainly seemed to help to make my nausea or other side effects negligable. i reluctantly agree that i seem to have "chemo brain" and am now investigating water fasting vs veggie juice fasting to help me lose weight and regain mental function.

Again i am very happy to hear your breast cancer resolved, and just wanted to say that both diet and repeat tests have great value. 

all the best, Sueki

Hi, all.  I'm new here. Just got diagnosed last Tuesday with invasive ductal carcinoma.  I dont know all the numbers etc but the surgeon said it's small around 1 centimeter and the receptors were all positive.  I'm a 65 year old, long retired RN which can be a liablility in this case. I was taught to not self medicate, etc.  But I didn't listen and have enjoyed a surface relationship with homeopathic remedies. They work well for me. But the nurse is still lurking inside and I'm too scared to go unconventional being so new and all. I basically watched chemo et al. kill two of my friends so I'm scared to death. It was 15 years ago and i realize many things have changed since then but I cant seem to keep their suffering out of my mind.  I have 3 daughters and a husband plus 8 grandchildren--lookimg forward to more from our younger daughter.  So they are putting pressure on me to do whatever the drs say. I dont know. I have appointments next week. Trying to get educated......

HapB said:

Clumpit

I think being a nurse will help you to understand your choices. Good luck to you. Have you had any surgery yet? 

No. I'm heading home in a week.  I have two appointments a couple of days apart for evaluation and plan of attack.  I assume that they will suggest a lumpectomy with whatever follows. The lesion is only about 1cm.  I would guess they'll take a few of my lymph nodes while doing the lumpectomy to check them and go from there. I'm trying to decipher the pathology report  ACS has a pamphlet you can download to explain the pathology. It's intimidating to look at the numbers and understand what they mean. 

Clumpit said:

So confused and scared

Hi, all.  I'm new here. Just got diagnosed last Tuesday with invasive ductal carcinoma.  I dont know all the numbers etc but the surgeon said it's small around 1 centimeter and the receptors were all positive.  I'm a 65 year old, long retired RN which can be a liablility in this case. I was taught to not self medicate, etc.  But I didn't listen and have enjoyed a surface relationship with homeopathic remedies. They work well for me. But the nurse is still lurking inside and I'm too scared to go unconventional being so new and all. I basically watched chemo et al. kill two of my friends so I'm scared to death. It was 15 years ago and i realize many things have changed since then but I cant seem to keep their suffering out of my mind.  I have 3 daughters and a husband plus 8 grandchildren--lookimg forward to more from our younger daughter.  So they are putting pressure on me to do whatever the drs say. I dont know. I have appointments next week. Trying to get educated......

What stage are you? You're ER, PR & HER2 positive? HER has it's own treatment. I'm not sure how chemo killed your friends. All the support groups etc I've been in & read all I could I've seen chemo save lives. You have a big family. I'm sure you want to be around for many years to come. It's good to learn about all you can traditional & alternative. You'll find something that feels right. As a nurse you know how diseases work. Their life cycles. And what they need to be killed. 

HapB said:

KC

I read your post and I wonder whether you would be willing to discuss whether you followed a specific diet? I have been doing research on diet and breast cancer and there is much they Just don't know. I hope to get a diet regimen that works to at least help me to feel better. 

it is my understanding that a PET scan can spot masses, but cannot assure us that there are no cancer cells in the body. Wouldn't it be great if there was a way to know whether we actually had cancer cells hiding in our body?  to my knowledge, there is no such test. That is why deciding on treatment is really a roll of the dice most times. 

I hope that you continue to feel well and that there is no evidence of cancer in your scans. 

Hi HapB,

Tumor marker blood tests CA 15-3 and CA 27-29 show the amount of cancer cells circulating in your blood.

I'm sure many on this web site have these tests done regularly. I know that I have them done each month. Some doctors do them, some don't, and they work for some women and don't for others  My first Oncologist did NO blood tests on me, nor any scans before or after my lumpectomy and radiation. I left him when he didn't take my bone pains seriously.

My current Oncologist checks my CA 15-3 bloodwork each and every month. The number goes up and down but definitely shows the amount of cancerous blood cells that are in my body. It's an additional tool that the doctor uses to help measure the degree of your present cancer.

There are blood tests that check the CA antigen in many different types of cancer. For Ovarian cancer I believe it's CA 125.

Something tells me that you don't have tumor marker bloodwork done. I'm glad my Oncologist does this. The very first time I met him, he told me immediately that there was definite indication through the CA 15-3 test that cancer was present in my body. This test shows accurate results in 80% of the population. It's a good indication, along with periodic scans, as to whether your cancer drugs and treatments are working or not. I went to Dana Farber in Boston for a consultation, and the first thing they did was have me get a tumor marker test. Over there they do the CA 27-29. It's a matter of preference as to which of the 2 tests the Oncologist wants to use.

Hope this has helped.  Best wishes,  Kats2

Hi HapB,

Tumor markers have been around for years. Not all doctors do them though. All it involves is a simple blood test.

When I have my regular bloodwork done my Oncologist checks off CA 15-3 along with the standard things like WBC, RBC, Hematocrit, Glucose level, etc. When my blood is analyzed in the lab, it's also checked for the Breast Cancer antigen. A number is written in the lab report showing what my tumor marker # is for that sample and date.  It helps the doctor see what my cancer level is and whether it's going up ( meaning that my treatments are not working that good), or lower, ( meaning that my treatments are lowering the cancer cells in my body.) 

The lower the #, the better. For the 15-3 tumor marker test, if you have little or no cancer, the numbers would be between 0.0-32.4. My last tumor marker bloodwork registered 1,569.6. High for the presence of cancer in my body. My Oncologist looks at the previous readings to get a sense of where I stand. I've had lower numbers in the past and also much higher numbers.

If my markers keep climbing over a 3-month period, I usually am sent for a CT and/or bone scan to see more clearly if there's progression. If so, then I'm switched to another drug plan.

As I've mentioned before, the tumor marker #s are NOT a reason to switch drugs. It's just another tool that the Oncologist uses to get a general sense of how your cancer is behaving. 

When I consulted with the Dana Farber Oncologist, she said that before switching any patient to another drug she looks at 3 things: 1) How the patient looks and feels, 2) the tumor marker #, and 3) the scan results. She bases her decisions on all 3 factors.

Tumor markers are not 100% fool-proof. Many things can affect the results, such as if the patient has a cold, has been ill with something else, etc. It's just another piece of a puzzle that helps the Oncologist out. 

I've had this CA 15-3 tumor marker test every month since Oct. 2014. I'm given a copy of all my bloodwork results each month and it shows my cancer level #. I can easily look at my lab reports and see all my results month by month.

The other tumor marker test is the 27-29. They use that one at Dana Farber but it's basically the same as the 15-3. 

If anyone out there has tumor markers done, I'd love to hear what you think of them and how your Oncologist likes or does not likes them. My original Onc didn't do them. He had NO idea that my BC level was rising to the point of metastasizing. I'm very pleased with my current Oncologist.

Hope to hear from anyone who has tms done.  Best to all!  Kats2

Hi HapB,

Look at your lab test results for bloodwork. On the printout there  should be one that says CA 15-3 Antigen, or CA 27-29 Antigen. If you don't see those, then your doctor doesn't do them. Look for anything that has CA in it. Even better, the next time you have an appt. with your Oncologist, ask him if he does tumor markers.( Some doctors don't, saying that they're unreliable .. That's debatable... ) Some doctors rely strictly on scans.

As soon as my Oncologist walks into the examining room, he tells me my tumor marker # right away. Then he looks at his computer and brings up my lab work from the previous months and tells me if they're getting higher or lower. He also looks over my other results, especially my Hematocrit level. That shows whether you're anemic or not. ( At one point I was and needed to get Procrit shots to get to an acceptable level)

Anyway, good luck with everything. Let me know what you find out.    Kats2

I too have had breast cancer   I did chemo as I had inoperable tumor  had 4 adriamycin   was supposed to have 12 taxon but only had 8  felt I would die if I had more   having radiation now but I'm gonna stop  had 21 out of 30   it's burning me terrible  don't want open sores   I don't blame u for not wanting that poison   I will never agree to chemo again even if they tell me I will die   I'd rather die    I don't like people telling me what I have to do   lymph nodes were neg for cancer but they still radiate my armpit til it's on fire   I don't feel that's necessary so  I'm refusing last 9 treatments   who decides magic number?  guess it's me   I researched chemo for breast cancer and I was,shocked,at number of deaths of women over 60   lot of dry don't recce usual chemo doses for over 60  yet they do it anyway   I felt I was going to die net before my 9th chemo and am convinced they would have let me die     so I admire any person who speaks their mind  I found out dry don't like it    you did what you felt was best for you  there are worse things than dying  like chemo   I don't want to live no matter what   if cancer comes back then it does    I wish u the best