My mom is refusing to take chemo, I am scared for recurrence

nanayko

Hi! I am a daughter that loves my mom so much, she is my rock and best friend. Last April she was diagnosed of Invasive ductal carcinoma stage2A grade2. She had mastectomy operation of her left breast and thank God all her 16 lymph nodes are negative for cancer cells. Her oncologist suggested chemo and her surgeon told her she can't have chemo if that what she want coz all lymph nodes are negative and margin is good. My mom is not here in US so I just do long distance communication with her. My sister and brother are the one taking her to all her appointments. My mom said she don't want chemo. My siblings is in favor not to have chemo coz she is 65 and have some digestion problems. But I keep on telling her that chemo will help kill the cancer cells that can't be detect by lab test. I am so scared that she will have recurrence in the future. Please if anyone here did not have chemo, can you please tell me why you did not have chemo?.. or should I really insist to my mom about chemo?... She will be back to her oncologist on next appointment. Is anybody here did not have chemo and just did hormonal therapy?.. thanks a lot... 

footprintsangel

Hi again my friend, Please take care, I had high chemo and

surgery and have been doing ok. I am 61 and without chemo

I wouldn't be here, It didn't bother me too much and I ate less

and slept. I believe in enjoying every day, I have had colon

cancer too, and they gave me stuff for my stomach. God luck

and stay positive and don't forget to take care of You. I did

when I was help family fight cancer. Good luck Debbie

Hortense

The fact that her margins were clear and none of her nodes had anything is good. Has she had an oncotest? Is it available to her? It might help determine of she would benefit from chemo - not all people will. I had it and my doctor felt from the results that I should have chemo so I took it. But other women who had different scores from mine did not have to have chemo because according to their results, they would not benefit from it.

Each woman's case is different. Your mother should speak to her doctors to find out the reasons why one recommends chemo and the other does not, then carefully consider what they tell her. If she doesn't have to have it, she should skip it. It is a serious poison and is hard to undergo at any age. It can also leave people with permanent side effects.

I was 63 when I had it and it left me with "chemo brain" which is annoying. I had chemo brain fog for more than a year and three years later I still feel the effects. I have trouble typing, I forget words and have unexpected lapses of thoughts when speaking which is embarrassing. But, I had positive nodes, so I needed chemo. Your mother did not have positive nodes. Perhaps she can safely skip it.

Take care. And, best of luck to your mother.

Meow13

Rose are you taking tamoxifen or an AI?

Snowgirl63

Hi, I did not have chemo ... They did oconotype and low score means less risk of reoccurance as well no benefit from chemo if anything could do more harm. I take the hormonal therapy and had radiation.

besa

Not everyone with stage II breast cancer needs chemo. As snowgirl63 said there is an Oncotype DX test that will give an estimate of an individual woman's risk of recurrence (used for women with ER positive, HER2 negative breast cancer, 0 to 3 positive nodes.) A low score would indicate that there is no benefit from chemo. I was stage 2A, node negative, had a mastectomy with reconstruction and also had an low Oncotype Dx score. The recommendation for me was not to have chemo. I did take hormonal therapy which reduces the risk of recurrence for women with ER+ breast cancer by about 1/2. In the U.S. early stage breast cancer patient are given personal statistics (statistics obtained from Oncotype Dx test) for our risk of recurrence with and without chemo, with and without hormone therapy. For me this information made the decisions about chemo and hormonal therapy much easier to make.

In the U.S. an oncologist is the one who usually makes recommendations for or against chemo (generally the breast surgeon does not make recommendations concerning this). Has your mom seen an oncologist specializing in breast cancer? (Also does your know the status of her tumors hormone receptors -they are called estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor 2 receptor (HER2) ) which would help her know how effective hormonal therapy would be for her. see last link below)

http://www.breastcancer.org/symptoms/testing/types...

http://www.oncotypedx.com/

Some helpful information about hormone receptor status of breast cancer tumors:

http://www.breastcancer.org/symptoms/diagnosis/her...

tgtg

Nanayko--There are a few more things you need to know about your mother's tumor--especially whether the pathology report on your mother's estrogen- and progesterone-receptors said positive or negative, and also what the pathology report said about her HER2 status. Even with clean nodes, a positive HER2 typically leads to chemotherapy.

As for the Oncotype number that others have referred to, that may not be an option for your mother since she is being treated abroad. It isn't available in Australia and Canada (and also, I believe, Japan), so she might not have access to it wherever she is, Your relatives living there would need to find out about its availability there.

While a lot of the concern about chemo pertains to immediate side effects (nausea, brain fog, etc.) there are also other factors about chemo that a 65-year-old woman might want to take into consideration, I haven't studied chemo too much since I didn't need it, but I did learn that chemo can damage vital organs, like the heart. For a 65-year-old, this can mean that she will stave off a breast cancer recurrence, but die soon anyway because of cardiac issues created or exacerbated by the chemo! ,I suggest that you do some research on this co-morbidity aspect of chemotherapy, before urging her to go along with the oncologist if she is HER2 negative, and to learn about the co-morbidity effects of the drug being suggested for her if she is HER+.

I suggest you have your family members abroad or your mother tell you the name of the drug the oncologist was suggesting (they may have to ask the oncologist if they don't know it) . It is just slightly possible that the oncologist was referring not to chemo but to hormonal therapy after surgery and radiation, and the anti-hormonals are a whole different issue from chemo. Something might have been lost in translation or in the transmission of information to you (oncologists prescribe an supervise both chemo and hormonal therapy).

I don't know what kind of health insurance system your mother is part of n her country, but if it is one that allows for a second opinion, seeking advice from another oncologist might be advisable too.

Finally, this decision is ultimately your mother's--not yours, not your relatives', not the oncologist's, The oncologist's job is to advisere a patient of his or her best recommend for that patient, but the oncologist cannot force a patient to accept that recommendation, and the family can't either. .Trudi . . .

Kathy044

tgtg makes a good point about the possibility of the word chemotherapy being used to cover any cancer drug therapy including hormone therapy. In British Columbia my anastrozole was dispensed to me for free through a hospital pharmacy and treated the same way ( for budgeting purposes) as a take home oral chemotherapy. One of my eye doctors In a referral letter to a corneal specialist mentioned in my history that I had breast cancer and would be on chemotherapy for five years.

Nanayko I was age 65 at diagnosis. Chemotherapy was recommended ONLY because I did have a positive node and at first I demurred, and my onc gave me a hug and said that would be OK and didn't strongly press further just mentioning that being in good health without other disease risks I very well could live into my nineties. The reason I did choose chemo was that I knew with a positive node, that I should have systemic therapy of some sort but at age 65 for quality of life reasons didn't know if I could or was willing to spend the next five years of my life on a pill with possible mobility limiting side effects. I wanted to travel.

I agree with the others, this is your Mother's decision and I hope you will support her in whatever she decides to do.

Kathy

Nomatterwhat

My mother who was 80 when diagnosed was Stage II, 2 nodes involved, had a BMX and refused chemo, radiation and hormonal therapy.  She is now almost 85 with no problems yet.  Her reasoning was that she did not make it through her first 80 years only to be pumped full of poison.  My brothers and I stand behind her decision and we let her live her life as she wants, as long as she can make her own decisions and take care of herself. 

Me on the other hand, I have done everything possible to prevent a reoccurrence. 

Snowgirl63

That was the best reply to her question ... Everything I wanted to say and knew for myself but didn't say cause I do this too late at night. I need to think things through better in my response for better info and so grateful Besa said! Thank you Besa for following through.

Teresa

Snowgirl63

Tgtg just a correction about oconotype is available in Canada I live in British Columbia and that is a province on the west coast of Canada

nanayko

Thank you so much everyone! I am teary eyed and touched that you amazing ladies took time to response to my letter. I am really doing my best to make a lot of research about breast cancer when my mom was diagnosed. I forgot to mention that my mom is in the Philippines while I live here in US. I know that my country back home is not so advance in medical technology unlike US, so I am thingking that oncotype test is maybe not available there. But I will let my siblings know about that so that they can ask my mom's oncologist. Yes my mom is seeing a cancer specialist.  I was told yesterday by my sister that the hormone receptors test result have not released yet, so I can't give you the info about it yet. I am the one in the family that is making research about my mom's condition and want to really be her advocate because she doesn't know all the medical terms. Yes in the end it will always be my mom's final decision if she will take chemo or not. Thanks a lot ladies for giving me all the information that we need to consider. I am also scared the long term side effects of chemo to her, tonight my sister told me that my mom said that she is now open to the idea of getting chemo if that will give her more chance of no recurrence in the future. I told them that we will just wait for the hormone receptors result and what her oncologist have to say about it on her next appointment. I also make list of questions to ask to her oncologist so that my family will be really informed. By the way to answer that question about insurance,  no my mom has no medical insurance so my family is paying all the bills. My mom is worried about the financial aspect, but we told her that we will do everything for her to have the best treatment and beat this disease because we love her to the moon and back. Thanks again, I feel better after reading all your response. Hugs to all the amazing ladies here..

grammakathy

Nanayko - I understand where you are coming from.  It is hard to be a daughter and understand our Mom's choices.  I had the same situation in the year 2000, when my Mom had a lumpectomy at age 80, and they found IDC and ILC.  Radiation and chemo were recommended but my Mom declined both.  There was no talking her into anything else, other than the lumpectomy.  She passed away 7 years later at the age of 87, and her cancer had not returned.  I wish you both the best and know that you are treasuring the time you have with your Mom.  I miss mine every day.  They are our biggest cheerleaders in life.

anotherNYCGirl

nanayko, - I agree with the responses that you received from others. Much depends on the test results re type and nodes.

I wanted to add that my Mom was diagnosed when she was 68, had mastectomy and no further treatment. (It was before the onco type testing). She passed away when she was a month shy of 99, not from cancer.

Sending be well wishes to you and your Mom!!

Snowgirl63

These posts about your Moms are so encouraging! Thank you for being so willing to share