Being a Breast Cancer Survivor without chemo/radiation

KCBarbieQ

I'm 61. 15 mos ago, I discovered a lump. Ends up there was a smaller one I hadn't felt,but both were removed.I said to leave my lymph nodes alone, I wasn't doing chemo OR radiation. Take it out and let's see what happened. I did change my diet, healthier, fruits/veggies,no bread,little dairy,minimal meat. My back was hurting in the fall,so an xray was done. 2 lesions were seen on my lungs,and one on my spine. I did nothing. This spring, I went back to my dr. Backache was back. He ordered an MRI,but laughed at me for wanting another mammo to "check". It was like Why bother,if you won't follow up on the lesions in your lungs?? The back MRI showed benign tumors on my spine. The mammo showed tumors in my breast,2,same spot as last year only smaller,under a cm each. I had those removed a few weeks ago.

Friends/family/well meaning people around me had me convinced that I played with fire,and was going to die,that SURELY it had spread. Little aches and pains I felt, they said,HAD to be mestastisized breast cancer. It was getting to me psychologically. I succumbed to thinking I had to do chemo/radiation just to live. Then my oncologist ordered a PET scan. I'd resisted that too,but finally had it done Friday. ABSOLUTELY ZERO CANCER CELLS in my body.....anywhere.

Some of my friends now say I was very lucky. One said "now don't f it up." This wasn't luck. This was much,much more. I believe I'm supposed to be here,and I'm supposed to let people know that,no,you don't HAVE to do what you're told to do,if in your heart, you can't do anything but what your mind TELLS you do do. LISTEN.

Will I do chemo now and keep the cancer away? Doubt it. Will I continue to research and find a way? Absolutely. Until our dear little govt can hand over a treatment without such horrible side effects, I'm not doing it. I will die fighting it. My grandmother was 51 when she died of breast cancer.My sis died of intestinal cancer at 43.Neither one had options. I do. But I still say NO.

 

 

Beepositive

kcbarbieQ reply

Hats off to you KCbarbieQ!!! we all have to make our own decisions its our lives!!! My doctors was saying a lot of stuff and this and that ..i decided to go with what was best for me  (left breast with with several lymph nodes positive)! we are all different and systems react to different things..

God Bless you and your family!!!!  Beepositive   Hugs to you!!!

LarkAlexis

Hi. I am brand new here--

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!

 

 

LarkAlexis

KCBarbieQ

I forgot to mention, KC, I am also 61. My first PET scan did show no cancer except in my left breast and left axillary...my surgeon also removed 11 lymph nodes (cancerous). I guess there may have been more, but I had insisted ahead of time that she NOT remove ALL my lymph nodes.

So now I need to browse around on this site to see how many more of us there are who are foregoing treatment. My body, mind, and spirit all tell me what I am doing is what's best for me!!

HapB

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. 

Apaugh

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. 

We have to make our choices and stick with it.

I agree with Hap.  What you do it your choice.  Keep us updated on your health.

Hugs,

Annie

Sueki

tests changing for the better: diet and/or test error?

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

HapB

Sueki said:

tests changing for the better: diet and/or test error?

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

Sueki

I wonder if you know that Dr. Servan-Schreiber died of his cancer and in his second book recommended that cancer patients use chemo and radiation to fight their cancer.   I have read his books. He was a brilliant man who used his medical knowledge to research all that is known about diet and supplements.  

Also, it is not the government that prescribes or develops treatments. 

I hope that you stay well! We all have to make really tough choices. 

Clumpit

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......

HapB

Clumpit

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

Clumpit

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

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. 

LouisaP

What stage are you? What kind

What stage are you? What kind of cancer do you have? That makes a difference. PET scan doesn't show if you have cancer cells. It will show metastasis to other parts of your body or new tumors. There's no test yet that will show if you have cancer cells in you. They're working on it though. 

LouisaP

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......

Clumpit

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. 

Kats2

How about tumor markers?

Hi everybody,

Scans don't show everything, especially microscopic cancer cells that are circulating around in your bloodstream. Bloodwork showing the amount of circulating cancer cells in the body would help indicate whether you're in the normal range or if a higher number of cancer cells are detected, which means that "something's up." 

Tumor markers are a tool to be used along with scans. 

I don't think anyone who's been afflicted with BC cancer can say positively that they're cancer-free. Breast cancer with all of its subtypes such as ESt+ or -, Her2 status, size of Primary tumor, Stage and grade of tumor, positive or negative nodes, Braca status, is notoriously clever and unpredictable. Women who've had  NED can have a recurrence 10-15 or more years down the road. 

Breast cancer patients need to be vigilant in their care, and follow-up care. Don't be fooled into thinking you can let your guard down. Yes, enjoy your life. Just get good care when first diagnosed and continued monitoring when you're done with active treatment. Eat nutritionally, stay active, be happy, follow medical protocols for your type of breast cancer. Don't just assume that everything will remain peachy. Maybe it will, God-willing, but just be on top of things.

As a Stage 4 BC patient I'm speaking from experience.

Best wishes to all for wonderful days ahead!    Kats2

 

 

Kats2

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. 

There ARE Tests that show cancer in blood

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

 

HapB

Tumor markers

Kats, so sorry about your diagnosis. Did you have any particular tumor marker tests? I was not aware that there was a blood test showing circulating cancer cells. I would have thought I would have heard about by now after 3 cancer dx !!  

Kats2

Tumor markers not new...

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

 

 

HapB

Kats2 said:

Tumor markers not new...

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

 

 

Tumor markers

kats, maybe they are doing the tumor markers and I don't know about it. I have access to every lab test that has been done . Is it always referred to by a number?  

Kats2

Tumor marker #s

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

Marsia

LarkAlexis said:

Hi. I am brand new here--

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!

 

 

Hi LarkAlexis.  

Hi LarkAlexis.  

New on the forum.  

I was diagnosed Oct 2014 with stage 2b breast cancer.  Did nutritional protocol and had a great response.  Then turned to keto diet and bc progressed.  I have not had any other treatments or surgery.  I worked hard to remain in ketosis for 2 years (It is possible to speculate as to why it did not work for me - a few lessons learned).  I now have mets to ribs (need to confirm extent of mets...), so officially stage 4 now. A week before I found the mets to ribs, I returned to the fresh/raw feeding plan I initially used - not sure what the result would be at this point, but it certainly cannot hurt.  Would love to continue alternative, but at this point, I'm considdering some form of alopathic treatment... 

With such a great response from good food, only, and being in contact with many people who are longer term survivors, I'm still very positive that change for the better could be real...

I'd love to hear how you're doing, and what you're doing?

Marsia

JKoehler25

Chemo decisions

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