My sister - TN, Stage 4

meisorori

My late 40ish year old sister was diagnosed with breast cancer about 2 years ago.  She read some literature that pushed her away from the "cut, burn, poision" (surgery, radiation, chemo) treatments of conventional therapy, and opted to an alternative treatment, namely "Protocel".

I was very concerned about her decision and strongly urged her to proceed with conventional treatments, but she responded negatively.  So, I backed off.  At the time I was the only one of her family and friends who said anything, and many were glad that I had been straight forward to her about my concerns but were also afraid/reluctant to do so. At any rate, we were as supportive of her decision as we could be.

Over 2 years her condition severly deteriorated.  The breast cancer appeared in both breasts.  One of the breasts is very hard. The other has completely collapsed with an open wound and diseased tissue about 3 to 4 inches in diameter.  At her lowest point, she was very anemic with a blood count around 12.  Her left arm is swollen to about 5x its normal size, and she has swollen lymph nodes.  At the rate she was deteriorating, I figured she only had a matter of weeks to live.

At that point she had to go to the hospital for a transfusion.  She gave up on the Protocel and listened to the advice of a friend that conventional treatment would help her with symptoms.  She started chemo several weeks ago and has improved much.  Her wound does not bleed as much.  She is not anemic like she was.  But the cancer has taken its toll. It is triple negative and has metastasized.

After she responded negatively for how I expressed my concerns about her choice of treatment 2 years ago, I have not pressured her.  I try to tread lightly on the state of her condition and so forth.  But I still have questions about her status and her prognosis.  I'm not even sure she is fully aware of her status and prognosis...sometimes it seems like she doesn't ask her doctor very comprehensive questions.  Maybe she doesn't want to know.  And I don't want to put any unwanted pressure on her.

The chemo seems to be working, but we won't know how well until she finishes this first treatment and does a set of tests in a few more weeks.

Is it true that less than 20% of stage 4 cancer victims live more than 5 years?

Is it possible that chemo alone can kill off all/most of the cancer cells?  Even large tumors?

Is it possible that the chemo can reduce the swelling in her lymph nodes and arm so that she can have her health somewhat back to normal?

Also, any one who responds, please be flat out straight-forward in your comments.  I don't need hand-holding or emotional support.  I want facts.  I'm trying to get information without stepping on my sister's toes so that I can help her in whatever way I can.

lolmarsha

I really can't help much. But can give you hope. I'm not as bad as your sister, but it isn't happy new either. They won't do chemo on me until nothing else works. so far femara is holding the cancer. If i get 5 years i'll be happy.They can't cure me. Only treat me as long as the treatments work.Health is NEVER back to normal. Rads have helped with mets to the bones. They are gone. Wish your sister the best! You are doing great by her. Just remenber this is her life, if she wants to stop fighting ,let her!This isn't a fun thing. always marsha ps hope I helped. If you want to talk some more . I will be here.

chumfry

Well, to be perfectly frank, it doesn't sound good for your sister. It really depends on how well she responds to chemo. I'm no doctor and I don't have mets, but I've been on these boards for many years. From what I've seen with other women, who eventually died from this disease, I would be very surprised if your sister lived more than another year or two.

For some people, I think chemo and/or radiation can reduce cancer pain. Other people may decide that the side effects of chemo/radiation aren't worth the extra months of life. I think every cancer patient has kind of a boundary in their head, when they'll decide to stop treatment.

If I were you, I'd spend as much time as you can with your sister, even if it's just on the phone. Just being available to listen to her will help a lot. No recriminations about the nontraditional treatment. Just love her and be with her in the "now."

It's very, very hard to walk with a loved one through the valley of the shadow. But try to be there for her and help her process her feelings and what needs to be done.

One thing that I've seen over and over is that hospice usually isn't called in early enough. This is a tragedy because hospice can help make the time left less painful and more peaceful. Maybe you can be an advocate for your sister if/when she decides it's time for hospice.

She may prefer to pretend that all is well and that she's getting better. And she *might* get a little better. I would take my cue from her. I know some cancer patients put on a brave face to "spare" their relatives and I think that just makes things harder for everyone. I would think your sister will need someone to talk to about her fears.

I'm sorry this is such a downer of a reply. I may be way off base. But from what you've written, I'd prepare for the worst, while trying not to dash her hopes. Good luck and hang in there.

--CindyMN

badboob67

Meisorori,

I have bone mets--not triple negative initially, but I have quit responding to hormonals so I am sort of in the same boat as others with TN disease.

Chemo can and does effectively kill cancerous cells. The problem is finding the right chemo for an individual and also that the length of time the chemo remains effective. Some chemos can work for several months to a year or more and others won't work at all. Being metastatic and TN usually means being in treatment (chemo) constantly, which can really be hard on the body's systems. Where your sister's mets are is important, too. There are surgical options available for some types of mets as well as other procedures that can be effective.

The generally accepted prognosis for all types of metastatic bc is 2-5 years. It is really highly dependent on the individual's response to tx and the particular characteristics of the individual's cancer. I have seen wide variances from that 2-5 year prognosis.

Please, do come visit us on the "recurrence and metastatic disease" section of the boards. Many of our "metsters" have more information than I and would be happy to answer your questions. Lots of us don't stray too far from that section of the boards, so they might not see your message here.

(((HUGS)))
Diane

meisorori

Thank you for the responses so far, and for helping me settle my expectations.

I have no intent to give her any more advice after trying to convince her 2 years ago to follow conventional treatments.  That was the time for her best shot at beating this thing, and I've already accepted that her life expectancy is probably going to be short. And if she does better than that, then I consider that a gift. At this point, all I care about is supporting her in whatever way she wants, whether she wants to fight or stop fighting ro whatever.

I live far away, but visited her recently.  The most I can do is support her emotionally over the phone, and plan to do that.  Thanks again, and any further comments are appreciated too.

Shirlann

Hi good sister, I wish whoever came up with the "cut/burn/poison" comment was drawn and quartered in the public square, I truly wonder how many women are dead because of him/her.

I grant you this treatment is not easy.  Chemo works on the principal that they poison you to just the point you can stand and this is because the cancer cells are more susceptible to this and die first.

The rads are similar, the cancer cells are slightly more susceptible to them than our normal cells. 

And someday, I am sure, they will remember these days as "Back when we killed a fly with a hammer".  But until then, this is what we have, and it saves lives.

About 80% of us recover completely.  I am 10 years post treatment and I have many, many friends in the same situation.  Cancer is gone.

It is a nasty miserable journey, but most of us do quite well.  And it sure beats dying.

I am so sorry that your sister took this route.  My sister, if she gets anything, will do the same, she is a total herbalist, all the way, I have had breast cancer and we have a first cousin on the other side of the family with breast cancer, but she won't have a mammogram.  She also let her blood pressure get up to 178/90.  I was shocked, I said, "What in the world are you doing?" Our mother and grandmother died of strokes.  She said, "Oh my herb book says we get one point higher with each year of our lives".  I said, well that is absolutely correct, but that doesn't make it smart to leave it up that high, when high blood pressure is so easy to treat and has little if any side effects.

But I cannot tell her anything, she won't even get the Shingles Vaccine.  Stubborn mule.

Nothing you can do, good sister, but love her and support her now.

Gentle hugs, Shirlann