What happens if you choose not to treat cancer?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Breast cancer spreads to the bones, lungs, liver, and brain. Then you die. You might get 2-4 years but you'd get more and more painful and debilitating symptoms and it would be a miserable decline without any intervention. You don't just fall over one day after having lived life to the fullest up to that moment.

I don't know what a doctor would do. If you're in your 30s and not stage IV they're going to try to persuade you as hard as they can that you're making a terrible decision. You might get referred for a psych eval to make sure you're not incompetent or mentally ill. If you're legally capable of making your own decisions then HIPAA would prevent them from telling your spouse, but it's not like you're going to be able to hide dying of stage IV cancer. It shows.

I hope this is a thought exercise and not something you or someone else is actively contemplating. I'm 34 and just finished radiation for stage 1 triple-positive IDC yesterday. I finished chemo in January. I don't know what my future holds but I'm giving it my best shot and treatment has been bearable and not what I feared.

what was your experience with radiation? did you have any bad side effects? How many weeks? where were you treated? was it on your left or right side? Mine is on my left side so they said I'd have to hold my breath during the radiation to protect my heart. I am still deciding whether to do radiation. In my case it is being recommended but not strongly recommended since my cancer is not that aggressive.

Yes, talk to your dr and more than one, if necessary. I’m the pp whose mom passed away from bc. My dh had a very rare cancer. Surgery and radiation. The radiation was on very thin skin and he had burns. It was also very tiring. He told the dr he was going to quit radiation bc he couldn’t do radiation and work. The dr said, no you are going to take time off of work and only focus on radiation. He made it through and 18 years later is still here. No recurrences. Kids were toddlers then and now are grown up. Cancer treatment sucks but sometimes it works.


Not PP, but you will get better information from a radiation oncologist because it depends on your breast size and where in the breast your cancer is (and tumor size). I met with one before I had surgery to help me decide which kind of surgery to do. I was worried about the left side issue too. She made me feel a lot better about it. She said they can often do prone positioning (depending on where the cancer is in your breast) to decrease heart and lung exposure. She also said that the technology they have now really reduces the non-breast exposure and most of the studies were conducted using older technologies. I still decided on a bigger surgery to avoid radiation, but it helped to talk to an RO about my specific case. She was in Bethesda.

[Anonymous]

My friend chose not to treat her metastatic breast cancer. I don’t know what stage she was at diagnosis. I can’t ask her why because she passed away last year but her family has told me that she wanted to spend quality time with her kids instead of dealing with the debilitating side effects from the treatments. She pursued homeopathic and natural treatments instead. She passed away about 7 years after diagnosis.

[Anonymous]

Anonymous wrote:OP, no idea what stage of cancer you have or anything else, but when I was first diagnosed, this essay both made me laugh and helped me feel less alone. https://www.theatlantic.com/health/archive/2021/08/caitlin-flanagan-secret-of-surviving-cancer/619844/

+1

I loved this article!!!

I also really love Kate Bowler's books and podcasts. She's brilliant and funny - just an amazing source of support when I was in treatment. (She's a Professor of Religion at Duke but her books and perspective are truly universal.)

https://katebowler.com/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Breast cancer spreads to the bones, lungs, liver, and brain. Then you die. You might get 2-4 years but you'd get more and more painful and debilitating symptoms and it would be a miserable decline without any intervention. You don't just fall over one day after having lived life to the fullest up to that moment.

I don't know what a doctor would do. If you're in your 30s and not stage IV they're going to try to persuade you as hard as they can that you're making a terrible decision. You might get referred for a psych eval to make sure you're not incompetent or mentally ill. If you're legally capable of making your own decisions then HIPAA would prevent them from telling your spouse, but it's not like you're going to be able to hide dying of stage IV cancer. It shows.

I hope this is a thought exercise and not something you or someone else is actively contemplating. I'm 34 and just finished radiation for stage 1 triple-positive IDC yesterday. I finished chemo in January. I don't know what my future holds but I'm giving it my best shot and treatment has been bearable and not what I feared.

what was your experience with radiation? did you have any bad side effects? How many weeks? where were you treated? was it on your left or right side? Mine is on my left side so they said I'd have to hold my breath during the radiation to protect my heart. I am still deciding whether to do radiation. In my case it is being recommended but not strongly recommended since my cancer is not that aggressive.

Yes, talk to your dr and more than one, if necessary. I’m the pp whose mom passed away from bc. My dh had a very rare cancer. Surgery and radiation. The radiation was on very thin skin and he had burns. It was also very tiring. He told the dr he was going to quit radiation bc he couldn’t do radiation and work. The dr said, no you are going to take time off of work and only focus on radiation. He made it through and 18 years later is still here. No recurrences. Kids were toddlers then and now are grown up. Cancer treatment sucks but sometimes it works.


Not PP, but you will get better information from a radiation oncologist because it depends on your breast size and where in the breast your cancer is (and tumor size). I met with one before I had surgery to help me decide which kind of surgery to do. I was worried about the left side issue too. She made me feel a lot better about it. She said they can often do prone positioning (depending on where the cancer is in your breast) to decrease heart and lung exposure. She also said that the technology they have now really reduces the non-breast exposure and most of the studies were conducted using older technologies. I still decided on a bigger surgery to avoid radiation, but it helped to talk to an RO about my specific case. She was in Bethesda.

Also ask if you qualify for Oncotype testing. It's a deeper dive into the genes of your particular cancer. The test is expensive but my insurance covered it. (And thankfully, my score turned out to be very low, which meant a clear recommendation to skip chemo and radiation. Just surgery and tamoxifen, both of which have been much less difficult than I expected. Four months later, I'm cancer-free and completely back in action!)

[Anonymous]

Anonymous wrote:

Anonymous wrote:you will die for sure. not sure why you would want to do that but it's your call.

I hate to break it to you PP but we will all die for sure.

op what stage is the the cancer? How aggressive is it? I was just diagnosed with DCIS and was told that if I did nothing I had a better than 50/50 chance of the cancer never spreading or impacting my health. The odds of that are also not zero for some stage one cancers. Other cancers will kill you matter what you do.

That said most breast cancers are highly treatable. In the end I had a lumpectomy. It was a super easy surgery and I have no scar. Even the oncologist could not find the scar and said she couldn't tell which breast had the surgery. Also there are studies for DCIS where they take a watchful waiting approach. Of that is the path you choose, would you consider being part of a study to further our understanding?

If in DC area, which doctor and hospital did you go to? Thanks!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:you will die for sure. not sure why you would want to do that but it's your call.

I hate to break it to you PP but we will all die for sure.

op what stage is the the cancer? How aggressive is it? I was just diagnosed with DCIS and was told that if I did nothing I had a better than 50/50 chance of the cancer never spreading or impacting my health. The odds of that are also not zero for some stage one cancers. Other cancers will kill you matter what you do.

That said most breast cancers are highly treatable. In the end I had a lumpectomy. It was a super easy surgery and I have no scar. Even the oncologist could not find the scar and said she couldn't tell which breast had the surgery. Also there are studies for DCIS where they take a watchful waiting approach. Of that is the path you choose, would you consider being part of a study to further our understanding?

If in DC area, which doctor and hospital did you go to? Thanks!

Lucy De La Cruz at Georgetown. Amazing surgeon and great bedside manner too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Breast cancer spreads to the bones, lungs, liver, and brain. Then you die. You might get 2-4 years but you'd get more and more painful and debilitating symptoms and it would be a miserable decline without any intervention. You don't just fall over one day after having lived life to the fullest up to that moment.

I don't know what a doctor would do. If you're in your 30s and not stage IV they're going to try to persuade you as hard as they can that you're making a terrible decision. You might get referred for a psych eval to make sure you're not incompetent or mentally ill. If you're legally capable of making your own decisions then HIPAA would prevent them from telling your spouse, but it's not like you're going to be able to hide dying of stage IV cancer. It shows.

I hope this is a thought exercise and not something you or someone else is actively contemplating. I'm 34 and just finished radiation for stage 1 triple-positive IDC yesterday. I finished chemo in January. I don't know what my future holds but I'm giving it my best shot and treatment has been bearable and not what I feared.

what was your experience with radiation? did you have any bad side effects? How many weeks? where were you treated? was it on your left or right side? Mine is on my left side so they said I'd have to hold my breath during the radiation to protect my heart. I am still deciding whether to do radiation. In my case it is being recommended but not strongly recommended since my cancer is not that aggressive.

new poster here. I just finished 5 weeks of radiation to left side. I used the breath hold technique. It's totally manageable. I was completely fine until 4 weeks in and then my skin started to blister. I never got the radiation fatigue or any other side effects. My cancer was IDC that had spread to one lymph node. I did chemo, double mastectomy and then radiation. Radiation was a piece of cake in comparison to the other parts of my treatment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Breast cancer spreads to the bones, lungs, liver, and brain. Then you die. You might get 2-4 years but you'd get more and more painful and debilitating symptoms and it would be a miserable decline without any intervention. You don't just fall over one day after having lived life to the fullest up to that moment.

I don't know what a doctor would do. If you're in your 30s and not stage IV they're going to try to persuade you as hard as they can that you're making a terrible decision. You might get referred for a psych eval to make sure you're not incompetent or mentally ill. If you're legally capable of making your own decisions then HIPAA would prevent them from telling your spouse, but it's not like you're going to be able to hide dying of stage IV cancer. It shows.

I hope this is a thought exercise and not something you or someone else is actively contemplating. I'm 34 and just finished radiation for stage 1 triple-positive IDC yesterday. I finished chemo in January. I don't know what my future holds but I'm giving it my best shot and treatment has been bearable and not what I feared.

what was your experience with radiation? did you have any bad side effects? How many weeks? where were you treated? was it on your left or right side? Mine is on my left side so they said I'd have to hold my breath during the radiation to protect my heart. I am still deciding whether to do radiation. In my case it is being recommended but not strongly recommended since my cancer is not that aggressive.

new poster here. I just finished 5 weeks of radiation to left side. I used the breath hold technique. It's totally manageable. I was completely fine until 4 weeks in and then my skin started to blister. I never got the radiation fatigue or any other side effects. My cancer was IDC that had spread to one lymph node. I did chemo, double mastectomy and then radiation. Radiation was a piece of cake in comparison to the other parts of my treatment.

+1. New PP, as well, and I agree with the above. I had ILC and did a mastectomy, chemo, radiation and then Tamoxifen/Letrozole. I found radiation to be very manageable, but exhausting mentally (more so than physically). By the time I got to radiation, I was just DONE with treatment and wanted my life back. I didn't start blistering until the very end and there were only a few days to a week where it was uncomfortable (but again, manageable). I had a little fatigue post-radiation, but not so bad that I couldn't work.

[Anonymous]

Anonymous wrote:OP, if this is your diagnosis, I’m truly sorry.

My grandmother had breast cancer at 52, in 1964. Her treatment was a “radical mastectomy” that apparently was the only treatment: surgical removal of her entire left breast, lymph nodes under her left arm and maybe even fat and muscle below her bicep area. She wore long sleeves and special weighted pads in her specially purchased bra. She was disfigured.

She lived well into her late 80s, although was perhaps the next to the last generation who kept her diagnosis a secret from everyone except her own daughter.

They didn't remove lymph nodes back then, which is why cancers spread and recurred so much more frequently.

[Anonymous]

If you don't want treatment (for anybody re: anything), "I decline against medical advice." Doctors need this statement. Just adding this detail for others who, under different circumstances, could benefit from knowing.

[Anonymous]

Anonymous wrote:Breast cancer spreads to the bones, lungs, liver, and brain. Then you die. You might get 2-4 years but you'd get more and more painful and debilitating symptoms and it would be a miserable decline without any intervention. You don't just fall over one day after having lived life to the fullest up to that moment.

I don't know what a doctor would do. If you're in your 30s and not stage IV they're going to try to persuade you as hard as they can that you're making a terrible decision. You might get referred for a psych eval to make sure you're not incompetent or mentally ill. If you're legally capable of making your own decisions then HIPAA would prevent them from telling your spouse, but it's not like you're going to be able to hide dying of stage IV cancer. It shows.

I hope this is a thought exercise and not something you or someone else is actively contemplating. I'm 34 and just finished radiation for stage 1 triple-positive IDC yesterday. I finished chemo in January. I don't know what my future holds but I'm giving it my best shot and treatment has been bearable and not what I feared.

DP. Do you mind my asking why you did chemo for stage 1?

[Anonymous]

Anonymous wrote:My mother had mouth and neck cancer in her mid 70s and chose not to have the operation or anything other than palliative care - pain killers basically. Originally she was told in August 2017 she would live through that winter Holiday season but wouldn't make it to the 2018 Holidays. She lived until the end of Dec. 2020.

My dad had chemo for throat cancer at 70. It was brutal and he lost so much weight (almost impossible to eat, food tastes like ash) and was so frail they almost had to stop it twice due to low blood counts. But two years later he’s very healthy for his age and has a full and active life. He doesn’t regret it but doesn’t minimize the pain and trauma he underwent. I think it’s s very tough decision and very personal obviously.

[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.

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mom is an doctor and had a patient who wouldn't take a life saving blood transfusion (she was jehovah's witness and had a DNR). As she died they made both her and her husband sign all sorts of papers acknowledging that they knew this would lead to death and absolving the doctor and hospital of liability. I'd assume if you didn't want to treat your cancer they'd have you sign something. You'd need to have a DNR signed too or else your DH could step in when you were incapacitated.

Thank you, this is sort of what I was looking for. I wasn’t sure if the doctor could require you to tell your spouse or get a mental competence certificate if you just opted against treatment.

They can not require anything if you do not go to the doctors.

PP here this is true. They were mostly signing because the woman had just given birth, which meant she was treated by doctors. It was nothing the doctors or nurses had done wrong, she just had hemorrhaged too much. She easily could have lived.

I'd assume if you were dying of cancer not one doctor would touch you with a 10ft pole.

[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.

My mom had stage 4 cancer that was discovered when she was 20 weeks pregnant with me (it was visible). Every doctor told her to terminate and immediately start radiation. She flew to top specialists. Obviously I'm glad she didn't, but she was lucky. I'm not sure I'd have made the same choice. She never had the cancer return.