What is it like to die of breast cancer?

Ebony,

Under the circumstances, you may consider putting your Mom in a facility. I can understand your way of thinking and I believe we all are on a journey and have to make decisions that we feel best. I think there are many factors to be considered regarding breast cancer. You may not have an aggressive form that would take you faster than the need for dialysis. You are in a horrible position for sure. Can you seek counseling to help you process each item separately? The cancer center I went to offered it free. It's a lot it sounds like. How about discussing it with your doctor?

I do not know the answer as far as what it's like to die with breast cancer. Possibly different for each person depending on where it ends up, such as brain vs. liver, etc. I know hospice is wonderful and does their best to keep the patient comfortable as the body shuts down. Heavy sigh...

Good luck to you as you deal with these things.

EbonyEyes:

I am so sorry you are feeling such despair. I have no first-hand experience with most of the issues that you are facing. All I can think of is for you to seek out resources for help.

Please see a social worker where you are getting care to help you. The nurse navigator should be able to refer you to one.

I admire and respect the compassion you have for your mother and your continued wish to provide care for her. But I wonder if that is truly possible any more, for reasons that are beyond your control, including your own health and safety. I think a social worker may be able to help you assess your situation objectively.

Please tell the social worker that you do not feel safe at home, as your mother has become violent and abusive.

You could ask the social worker whether the laws relating to "commitment" apply to a person being admitted to a nursing home or similar facility, particularly if they have dementia and may not be competent to make decisions themselves, or if they have become a danger to the caregiver, or if the caregiver's own health makes it no longer feasible to continue providing care.

If you were to die for some reason even some time from now, your mother would be alone. As difficult as it may be for you, the best thing that you can do for her may be to work with a social worker to find her a suitable care situation sooner rather than later. Even if your siblings do not want to care for your mother, perhaps they would be willing to help you with this process, so you can focus on your own health challenges. [Edited to add: By seeking treatment for yourself, you have the best chance of being in a position to be an advocate for your mother.]

The social worker may also be able to provide some more input regarding health care costs. I don't know about dialysis, and what assistance may be needed or may be available if that situation arises. For now, regarding Lucentis, Genentech appears to have a Patient Assistance program. The social worker may be able to work with you to find out if this program could help you:

http://www.genentech-access.com/lucentis/patients/...

Regarding your own treatment, the breast surgeon must be made aware of your other conditions if they are not already aware. Your primary care physician (PCP) can also help, by coordinating care, and referring you to additional medical expert(s) if indicated (e.g., a kidney specialist, a blood-pressure expert). Your PCP, breast surgeon, and any expert can then coordinate together on your care as needed.

You were leaning towards a second opinion recently, and I encourage you to please seek a second opinion before deciding to do nothing. You can confirm that you are a suitable candidate for surgery (in view of your additional conditions) by asking this question directly to the surgeon you consulted with already and your second opinion breast surgeon. If you are a suitable candidate for surgery, with your early stage disease, surgery is probably the best intervention available to you. Further treatment may or may not even be indicated.

In the second opinion, you can investigate the question of mastectomy versus lumpectomy (plus sentinel node biopsy in either case) as discussed elsewhere. In another thread, we discussed that mastectomy is sometimes recommended for early stage disease.

Note that mastectomy would be single surgery. Lumpectomy may be one surgery or may require more than one surgery to achieve clean margins, and occasionally ends with mastectomy because of extensive disease.

If indeed you have an area of DCIS and a second area of DCIS with a small 3 mm area of IDC, you should have a good prognosis at this point (better than most). After my bilateral mastectomy, my diagnosis on the right side was 5+ cms of ER+/PR+ DCIS, 1.5 mm of IDC, and some <1 micro-invasion, with 0/4 negative nodes. My margins were okay (not huge). No radiation was recommended, and the oncologist did not recommend either chemo or anti-hormonal treatment based on anything found on the right. Therefore, I have been treated by surgery alone. It will be two years ago in September.

I realize that sometimes additional findings are present in the post-surgical pathology. So it is possible that other treatments would then be offered. Being post-menopausal probably, you would have more options in terms of anti-hormonal treatment. With full information on your stage and prognosis post-surgery, you can consider the risk/benefit analysis of each further treatment, or possibly just stand on the benefit of surgery. Again, maybe nothing will be found that requires additional treatment.

I know you feel despair and are overwhelmed. But I think you must be a strong person who with help will find a way forward.

I will keep you in my thoughts and prayers.

BarredOwl

Dear EbonyEyes:

Elsewhere you mentioned that no one gave you any kind of estimate about survival rates. This is because the actual stage is determined from the surgical pathology (after the surgery and lymph node biopsy), and many doctors (surgeons, oncologists and radiologists) prefer to wait for this complete determination of stage before providing you with a personalized estimate of the risks and benefits of any further treatments.

The main point of my comments below is that looking at the size of the cancer only, what appears so far to be a Stage I cancer (pending surgical pathology), would have an excellent 5-year prognosis if treated. Please continue to investigate your treatment options and do not give up.

Stage I in the TNM staging system includes:

Tumors less than or equal to 2 cms ( ≤ 20 mm ) in greatest dimension

N0 (node negative) or pN1mi (nodal micro-metastases only (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)

M0 (No clinical or radiographic evidence of distant metastases)

This is what the American Cancer Society says about "relative survival rates":

"A relative survival rate . . .compares the observed survival with what would be expected for people without the cancer. This helps to correct for the deaths caused by something besides cancer and is a more accurate way to describe the effect of cancer on survival. (Relative survival rates are at least as high as observed survival, and in most cases are higher.)

In order to get 5-year survival rates, doctors have to look at people who were treated at least 5 years ago. Improvements in treatment since then may result in a more favorable outlook for people now being diagnosed with breast cancer.

Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen in any particular person's case. Many other factors may affect a person's outlook, such as your age and health, the presence of hormone receptors on the cancer cells, the treatment received, and how well the cancer responds to treatment. Your doctor can tell you how the numbers below may apply to you, as he or she is familiar with the aspects of your particular situation."

The American Cancer Society gives the "5-year RELATIVE survival rate" (which excludes deaths caused by something other than cancer) given for Stage I breast cancer is 100%. This includes a variety of patients who are typically treated by one or more of surgery, radiation, anti-hormonal treatment, chemotherapy, and/or anti-HER2 targeted therapy.

I am an example of a Stage I patient that was treated by mastectomy alone (almost 2 years ago).

Please continue to investigate your treatment options and do not give up.

BarredOwl

EbonyEyes:

Very glad you are going for your second opinion.

BarredOwl

I must say I am afraid of cancer strangling the life out of me. I'd rather have a more painless exit.

Dear EE:

I found this and want to post it here FOR YOU, and FOR MY FELLOW MEMBERS out there who may be feeling disheartened....

Take care now.... NATSGSG

clarasophia, your posts are condescending. These women are educated about breast cancer so please don't insult us by suggesting you know better. It is not helpful

Dear EbonyEyes:

Please let us know how you are doing currently....

I was diagnosed on Friday afternoon and had an MRI and other tests yesterday and today. Petrified. Was running a marathon in October, not anymore. Surgery later this week but they don't know yet how much cancer is in me. Alone and sad.

Hi Jen, we, too welcome you to Breastcancer.org. We know this is a scary time, but you've found the BEST place for support!

Please continue to let us know how you're doing, and ask questions -- we're all here for you!

--The Mods