What happens if you choose not to treat cancer?

[Anonymous]

Op, whatever specific outcome you are trying to avoid, consider the alternative and then remember that you don't know what you don't know. Maybe you can go with a conservative approach to treatment and buy yourself some time. I haven't read any responses you may have posted.

I still see people falling to their deaths taking selfies. As a bc survivor myself I consider the myriad ways one might die and what we tend to fear. We can't predict what will happen no matter what we do.

However, life is time, and time is life. Only you can measure quantity against quality, but you have to try to accomplish this calculus with facts more than fears. Hard!

I understand fear very well. Fears aren't facts, though.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If I am in my 30s and learn I have breast cancer, what would happen if I just told the doctor that I don’t want to treat it? Is the doctor required to notify my spouse or insurance? Do I get sick and die six months later?

OP: I was diagnosed with breast cancer this year and I have completed treatment. I know it is scary and overwhelming, and I'm happy to answer as many questions as possible. To know how long you are likely to live untreated (and what your quality of life would be like) it REALLY matters what kind of cancer you have and what stage. What kind of cancer do you have? Your biopsy report will have this information. The most common possibilities are DCIS (ductal carcinoma in situ), IDC (invasive ductal carcinoma), ILC (invasive lobular carcinoma), Pagent's disease and/or inflammatory breast cancer. Of these, IDC is the most common form of invasive breast cancer. There are also important differences in terms of your cancer's receptors. For example, is your cancer estrogen or progesterone positive? Is it HER+? HER+ is more aggressive and requires a specific treatment or it will metastasize to your brain, lungs, or bones, and that is not a pleasant way to die. HER+ used to have a bad prognosis but the drug Herceptin has really changed that and now women with this type of cancer can live normal lifespans. Similarly, triple negative (ie not hormone positive or HER+ cancer) is more aggressive but with modern treatments women can survive this cancer and live a long time.

The next important variable is your stage of cancer -- this means how far it has spread. Breast cancer is staged from 0-4, with 4 being the most advanced disease. DCIS (or any in situ cancer) hasn't spread outside its original site. It is considered stage 0 and the long-term survival (if treated) is close to 100%. Stage 1 cancer has invaded surrounding tissue, but not lymph nodes; stage 2 has spread more regionally and may involve some nodes; etc. ALL stages of breast cancer are survivable now, but the earlier the treatment the greater your chance of long-term survival. I know a woman who was diagnosed at stage 4 with bone mets and she has lived 11 years since then and lives a normal life. She has to have treatment every year or two, but otherwise she has a job, a boyfriend, and a happy life.

You should also know that treatment for breast cancer is really not as bad as you may fear. I know women who have had all different types of treatment. I had a double mastectomy and honestly, it was not a big deal to me. I was grateful to have caught my cancer early and I was happy that surgery was an option for me. There are all kinds of reconstruction options and some women are happier with their new breasts (I did not opt for reconstruction and I'm very happy with my new flat aesthetic). My aunt had stage two with node involvement and she had a lumpectomy plus chemo and it was fine for her. She is healthy and happy now, two years later, and did not suffer very much during the chemo. Radiation, which has a terrible reputation in the public imagination, is actually the easiest and absolutely most painless part of treatment for many women.

And here's the important part: the treatment is MUCH better than dying of breast cancer. What happens when women are at end stage is painful and horrible for them and their families. YOU WANT TO AVOID A BREAST CANCER DEATH IF YOU CAN. And most women can! Breast cancer is very survivable with current treatments! I am in a lot of breast cancer support groups and the end stage women are in a lot of pain. They have difficulty breathing because of lung mets and fluid in their lungs. They may be disoriented or suffering from intractable migraines due to brain mets. They may linger in a coma. They may have terrible, terrible pain due to bone mets throughout their body. They may live many months in this state and their families are forced to endure it along with them. It is a very cruel thing to inflict on the people who love you.

I don't know the reason why you are contemplating refusing treatment, but if you are depressed and suicidal, this is not the way that you want to die. Depression during cancer diagnosis is very common. There are people who specialize in treating cancer diagnosis depression and medicines can help too. Sometimes the disease itself causes depression for physiological reasons. Please reach out to your cancer doctor and ask for a psychiatric consult. They will be able to hook you up.

Also, I strongly recommend joining some online breast cancer support groups and reading other women's stories before making any final decisions about treatment. Facebook has lots of these groups and they are wonderful. They are a safe place to vent and share information with people who really understand. A LOT of women feel exactly as you do. You can be honest and you will not be judged. One specific group is called "breast cancer support - I got this!" There are other really great ones that are specific to your type of cancer (eg hormone positive, HER+, etc.). There is a wonderful group called "Young women with breast cancer" that is for women under 50. You would really benefit from reading their stories. They are a great group. There is also a great Maryland breast cancer group on Facebook.

Also, if you want a great local breast specialist (ie surgeon), check out Dr. Pamela Wright. She's part of the John's Hopkin's system. Dr. Wallmark is a very compassionate medical oncologist. I didn't have radiation, but there are some great ROs in the area too. Also if you have a rare or more aggressive cancer, John's Hopkin's in Baltimore has an excellent dedicated cancer center. If I had a complicated case I would also not hesitate to get a second or third opinion at Sloan Kittering in NYC, or MD Anderson in Houston. Dedicated cancer centers have the best survival rates for aggressive or rare cases. THERE IS ALWAYS HOPE FOR MEANINGFUL HEALING AND A HEALTHY LIFE AHEAD.

I know how hard this is, but there are so many people on this exact same journey. I am sending you virtual, anonymous love, and so many wishes for healing and health. YOU ARE NOT ALONE.

NP. I’m currently in treatment and your post is equal parts reassuring (optimism about efficacy of treatment) and terrifying (“avoid a BC death at all costs” with details of pain and suffering). These threads are hard for me.

I'm so sorry, PP. I was thinking of OP, but not of others survivors reading that comment. It is upsetting to read OP's post because I have seen so many newly-diagnosed women post in support groups that they don't want to do treatment, but they seem not to be comparing treatment with the realistic alternatives. Some people are more afraid of treatments than of advanced BC, but I think that's because they haven't participated in support groups in which people were at all different stages of disease. It's so sad when that happens and the person realizes their mistake later.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If I am in my 30s and learn I have breast cancer, what would happen if I just told the doctor that I don’t want to treat it? Is the doctor required to notify my spouse or insurance? Do I get sick and die six months later?

OP: I was diagnosed with breast cancer this year and I have completed treatment. I know it is scary and overwhelming, and I'm happy to answer as many questions as possible. To know how long you are likely to live untreated (and what your quality of life would be like) it REALLY matters what kind of cancer you have and what stage. What kind of cancer do you have? Your biopsy report will have this information. The most common possibilities are DCIS (ductal carcinoma in situ), IDC (invasive ductal carcinoma), ILC (invasive lobular carcinoma), Pagent's disease and/or inflammatory breast cancer. Of these, IDC is the most common form of invasive breast cancer. There are also important differences in terms of your cancer's receptors. For example, is your cancer estrogen or progesterone positive? Is it HER+? HER+ is more aggressive and requires a specific treatment or it will metastasize to your brain, lungs, or bones, and that is not a pleasant way to die. HER+ used to have a bad prognosis but the drug Herceptin has really changed that and now women with this type of cancer can live normal lifespans. Similarly, triple negative (ie not hormone positive or HER+ cancer) is more aggressive but with modern treatments women can survive this cancer and live a long time.

The next important variable is your stage of cancer -- this means how far it has spread. Breast cancer is staged from 0-4, with 4 being the most advanced disease. DCIS (or any in situ cancer) hasn't spread outside its original site. It is considered stage 0 and the long-term survival (if treated) is close to 100%. Stage 1 cancer has invaded surrounding tissue, but not lymph nodes; stage 2 has spread more regionally and may involve some nodes; etc. ALL stages of breast cancer are survivable now, but the earlier the treatment the greater your chance of long-term survival. I know a woman who was diagnosed at stage 4 with bone mets and she has lived 11 years since then and lives a normal life. She has to have treatment every year or two, but otherwise she has a job, a boyfriend, and a happy life.

You should also know that treatment for breast cancer is really not as bad as you may fear. I know women who have had all different types of treatment. I had a double mastectomy and honestly, it was not a big deal to me. I was grateful to have caught my cancer early and I was happy that surgery was an option for me. There are all kinds of reconstruction options and some women are happier with their new breasts (I did not opt for reconstruction and I'm very happy with my new flat aesthetic). My aunt had stage two with node involvement and she had a lumpectomy plus chemo and it was fine for her. She is healthy and happy now, two years later, and did not suffer very much during the chemo. Radiation, which has a terrible reputation in the public imagination, is actually the easiest and absolutely most painless part of treatment for many women.

And here's the important part: the treatment is MUCH better than dying of breast cancer. What happens when women are at end stage is painful and horrible for them and their families. YOU WANT TO AVOID A BREAST CANCER DEATH IF YOU CAN. And most women can! Breast cancer is very survivable with current treatments! I am in a lot of breast cancer support groups and the end stage women are in a lot of pain. They have difficulty breathing because of lung mets and fluid in their lungs. They may be disoriented or suffering from intractable migraines due to brain mets. They may linger in a coma. They may have terrible, terrible pain due to bone mets throughout their body. They may live many months in this state and their families are forced to endure it along with them. It is a very cruel thing to inflict on the people who love you.

I don't know the reason why you are contemplating refusing treatment, but if you are depressed and suicidal, this is not the way that you want to die. Depression during cancer diagnosis is very common. There are people who specialize in treating cancer diagnosis depression and medicines can help too. Sometimes the disease itself causes depression for physiological reasons. Please reach out to your cancer doctor and ask for a psychiatric consult. They will be able to hook you up.

Also, I strongly recommend joining some online breast cancer support groups and reading other women's stories before making any final decisions about treatment. Facebook has lots of these groups and they are wonderful. They are a safe place to vent and share information with people who really understand. A LOT of women feel exactly as you do. You can be honest and you will not be judged. One specific group is called "breast cancer support - I got this!" There are other really great ones that are specific to your type of cancer (eg hormone positive, HER+, etc.). There is a wonderful group called "Young women with breast cancer" that is for women under 50. You would really benefit from reading their stories. They are a great group. There is also a great Maryland breast cancer group on Facebook.

Also, if you want a great local breast specialist (ie surgeon), check out Dr. Pamela Wright. She's part of the John's Hopkin's system. Dr. Wallmark is a very compassionate medical oncologist. I didn't have radiation, but there are some great ROs in the area too. Also if you have a rare or more aggressive cancer, John's Hopkin's in Baltimore has an excellent dedicated cancer center. If I had a complicated case I would also not hesitate to get a second or third opinion at Sloan Kittering in NYC, or MD Anderson in Houston. Dedicated cancer centers have the best survival rates for aggressive or rare cases. THERE IS ALWAYS HOPE FOR MEANINGFUL HEALING AND A HEALTHY LIFE AHEAD.

I know how hard this is, but there are so many people on this exact same journey. I am sending you virtual, anonymous love, and so many wishes for healing and health. YOU ARE NOT ALONE.

[Anonymous]

I had a good friend about a decade ago, she was sixty-four and one day she discovered a lump underneath her armpit.

Her parents had both died young from cancer.
Anyway she may have been afraid.
Or not.

Regardless she tried to hide her lump (which eventually grew to the size of a basketball, I kid you not) until she no longer could not.
She eventually could not even put her arm in any “down” position.
It wasn’t until a social worker saw her & noticed her huge tumor even though my friend tried her best to cover it up w/a quilt.

The social worker called an ambulance and she was taken into E/R.
By the time she was seen - her cancer was already too advanced for any sort of medical treatment. 😔

My friend had had a rough life.
Her husband had beat her and she was a single mom to four boys > three developing mentally disabled.

I strongly suspect that she did not get treated earlier because she likely wanted to die.
She had told me in the hospice that she felt as if she had led a complete life already and was not afraid to go.

[Anonymous]

So sad.

[Anonymous]

Anonymous wrote:I had a friend who was diagnosed with breast cancer when she was pregnant. She deferred treatment until after the baby was born. She died before the baby was two years old even though she started treatment after the baby was born. It was too late.

I know of a friend of a friend who had a similar story. Did her name start with A by any chance?

[Anonymous]

Anonymous wrote:If I am in my 30s and learn I have breast cancer, what would happen if I just told the doctor that I don’t want to treat it? Is the doctor required to notify my spouse or insurance? Do I get sick and die six months later?

Oncology nurse here. SO many variables to breast cancer, not a blanket answer. Your insurance will know you've had tests to diagnose cancer. People live for years with certain types of cancer

[Anonymous]

Anonymous wrote:

Anonymous wrote:If I am in my 30s and learn I have breast cancer, what would happen if I just told the doctor that I don’t want to treat it? Is the doctor required to notify my spouse or insurance? Do I get sick and die six months later?

OP: I was diagnosed with breast cancer this year and I have completed treatment. I know it is scary and overwhelming, and I'm happy to answer as many questions as possible. To know how long you are likely to live untreated (and what your quality of life would be like) it REALLY matters what kind of cancer you have and what stage. What kind of cancer do you have? Your biopsy report will have this information. The most common possibilities are DCIS (ductal carcinoma in situ), IDC (invasive ductal carcinoma), ILC (invasive lobular carcinoma), Pagent's disease and/or inflammatory breast cancer. Of these, IDC is the most common form of invasive breast cancer. There are also important differences in terms of your cancer's receptors. For example, is your cancer estrogen or progesterone positive? Is it HER+? HER+ is more aggressive and requires a specific treatment or it will metastasize to your brain, lungs, or bones, and that is not a pleasant way to die. HER+ used to have a bad prognosis but the drug Herceptin has really changed that and now women with this type of cancer can live normal lifespans. Similarly, triple negative (ie not hormone positive or HER+ cancer) is more aggressive but with modern treatments women can survive this cancer and live a long time.

The next important variable is your stage of cancer -- this means how far it has spread. Breast cancer is staged from 0-4, with 4 being the most advanced disease. DCIS (or any in situ cancer) hasn't spread outside its original site. It is considered stage 0 and the long-term survival (if treated) is close to 100%. Stage 1 cancer has invaded surrounding tissue, but not lymph nodes; stage 2 has spread more regionally and may involve some nodes; etc. ALL stages of breast cancer are survivable now, but the earlier the treatment the greater your chance of long-term survival. I know a woman who was diagnosed at stage 4 with bone mets and she has lived 11 years since then and lives a normal life. She has to have treatment every year or two, but otherwise she has a job, a boyfriend, and a happy life.

You should also know that treatment for breast cancer is really not as bad as you may fear. I know women who have had all different types of treatment. I had a double mastectomy and honestly, it was not a big deal to me. I was grateful to have caught my cancer early and I was happy that surgery was an option for me. There are all kinds of reconstruction options and some women are happier with their new breasts (I did not opt for reconstruction and I'm very happy with my new flat aesthetic). My aunt had stage two with node involvement and she had a lumpectomy plus chemo and it was fine for her. She is healthy and happy now, two years later, and did not suffer very much during the chemo. Radiation, which has a terrible reputation in the public imagination, is actually the easiest and absolutely most painless part of treatment for many women.

And here's the important part: the treatment is MUCH better than dying of breast cancer. What happens when women are at end stage is painful and horrible for them and their families. YOU WANT TO AVOID A BREAST CANCER DEATH IF YOU CAN. And most women can! Breast cancer is very survivable with current treatments! I am in a lot of breast cancer support groups and the end stage women are in a lot of pain. They have difficulty breathing because of lung mets and fluid in their lungs. They may be disoriented or suffering from intractable migraines due to brain mets. They may linger in a coma. They may have terrible, terrible pain due to bone mets throughout their body. They may live many months in this state and their families are forced to endure it along with them. It is a very cruel thing to inflict on the people who love you.

I don't know the reason why you are contemplating refusing treatment, but if you are depressed and suicidal, this is not the way that you want to die. Depression during cancer diagnosis is very common. There are people who specialize in treating cancer diagnosis depression and medicines can help too. Sometimes the disease itself causes depression for physiological reasons. Please reach out to your cancer doctor and ask for a psychiatric consult. They will be able to hook you up.

Also, I strongly recommend joining some online breast cancer support groups and reading other women's stories before making any final decisions about treatment. Facebook has lots of these groups and they are wonderful. They are a safe place to vent and share information with people who really understand. A LOT of women feel exactly as you do. You can be honest and you will not be judged. One specific group is called "breast cancer support - I got this!" There are other really great ones that are specific to your type of cancer (eg hormone positive, HER+, etc.). There is a wonderful group called "Young women with breast cancer" that is for women under 50. You would really benefit from reading their stories. They are a great group. There is also a great Maryland breast cancer group on Facebook.

Also, if you want a great local breast specialist (ie surgeon), check out Dr. Pamela Wright. She's part of the John's Hopkin's system. Dr. Wallmark is a very compassionate medical oncologist. I didn't have radiation, but there are some great ROs in the area too. Also if you have a rare or more aggressive cancer, John's Hopkin's in Baltimore has an excellent dedicated cancer center. If I had a complicated case I would also not hesitate to get a second or third opinion at Sloan Kittering in NYC, or MD Anderson in Houston. Dedicated cancer centers have the best survival rates for aggressive or rare cases. THERE IS ALWAYS HOPE FOR MEANINGFUL HEALING AND A HEALTHY LIFE AHEAD.

I know how hard this is, but there are so many people on this exact same journey. I am sending you virtual, anonymous love, and so many wishes for healing and health. YOU ARE NOT ALONE.

Oncology nurse from above. This may be, without a doubt, the best response I've ever seen here on DCUM. You've obviously done your research and know your shizz. I truly hope that you are part of a support group in your area, your experience and understanding of the disease is impressive

[Anonymous]

They’ve come such a long way with managing the side effects of chemo. One of my regimens used to cause people extreme nausea, for example but now they give you pre-meds that make that unlikely. As my oncologist said, “You’ll be fine. There’s a remedy for everything.” And she was right. The nurses really help you through. It’s been much more manageable than I expected or feared. And the infusion room is surprisingly peaceful. So the stories of people opting out of treatment are very sad.