Supporting my Mother

This is going to be tough for you, because it sounds like you don't live close enough to go with your mom to appts, etc. I've been in the same situation when my mom has faced medical issues, and it's terribly frustrating.

To make things worse, it sounds like your mom was having problems before she was ever diagnosed with BC. For some people, a cancer dx sweeps out all the non-important stuff in your life. Other people seem to focus more on these things.

I don't think I knew about my triple-negative status until after my surgery. I'm not sure that PCPs really know much about cancer information. Hopefully, your mom will get more info from the surgeon tomorrow.

I'm concerned about the fact that your mom's breast has been inflamed and painful. She should have gone back to the doctor about that. Perhaps there's an infection. Or she may have inflammatory breast cancer, which has its own dangerous aspects and needs prompt treatment.

Is there any friend or relative that can go with your mom to her appt tomorrow? You really need two sets of eyes and ears (and two brains) to process all the information she's going to get.

In general, a lumpectomy followed by radiation is just as effective as a mastectomy. If she has a very large tumor or perhaps several tumors, a mastectomy might be a better choice.

They might not even talk to her about chemo until after her surgery. If her tumor is smaller than 1 cm, she probably won't need chemo because the risks of the treatment typically outweigh the benefit at that tumor size.

However, if her tumor is bigger than 1 cm, she really needs to do chemo. Triple-negative women have no other weapons to fight the cancer. None of the hormone-related treatments (tamoxifen, herceptin, etc.) will help us. Most people say it's best to hit the cancer as hard as you can at your very first opportunity. Nuke it from space.

I wouldn't even worry about diet and exercise right now. Your mom is going to be fighting for her life here. She's got to completely focus on getting through treatment. Afterwards, she can make her own decisions about diet and exercise. You're not going to change 64 years of habits.

And if she chooses not to do treatment, that's her choice. It's a hard one to stand by and watch, because I can practically guarantee that it will shorten her life. But your mom's an adult and gets to make her own decisions about these types of things.

I'm so sorry that your mom's going through this. This is a very difficult experience for the entire family. Is there any chance that she might go to counseling to help sort out her feelings about all this? To tell you the truth, it may become easier once she starts treatment, because she will be too busy/tired to do much except just put one foot in front of the other for a while.

I don't know if my words will make you feel better or worse. But I am sympathetic to your situation. Don't forget to take care of yourself during this stressful time.

--CindyMN

Hi Maraena,

That's wonderful that you're so concerned and involved in your mother's treatment and care.  My mother passed away a few months ago, after going on dialysis just so that she could see me through the worst of the bc experience (diagnosis, chemo and surgery).   I'm happy to report that I'm doing great, and although I've been "let-go" at work, it gave me the time I've needed to start a real exercise program and diet. Everything I read about bc, and tn in particular, tells me that weight control and exercise are critical to a recurrance-free survival. 

While in treatment, my onc put me on an anti-depressant. She said it was for the chemo-induced hot flashes, although I doubt it.  I think it was because she's learned that bc newbies are apt to be depressed.  (I'm 55, btw, so I know about hot flashes; been there, done that!).  Anyway, I went off the anti-depressant about 6 months ago because I know from past experience that it wasn't helping with weight loss, and I didn't really need it.  But, as I read your post about your mother, the first thought I had was that she's probably terrified inside, and in denial (denial about the future, not about what she's going through now).  Consequently, I thought she would be a great candidate for an anti-depressant to "take-the-edge-off" things.  Just a thought?  

As for me, I didn't really start thinking about the future and what I was going to do to survive this beast until I was all through with chemo and surgery and began to get my life back. I think the important thing may be to get your mother through the initial treatment - which will probably definitely include chemo (for tn), and take it from there.  Hopefully, her onc will be able to explain the benefits of chemo on tn bc.  If not, try another onc?

Good luck and please keep us posted!

Sue

In 2005, I hardly heard of anybody getting chemo before surgery, but it is now much more common. If it is a really large tumor, the surgeon may want to shrink it down so it will be easier to obtain clean margins. Another benefit of chemo before surgery is that you will be able to see if the chemo drugs are actually working. If the tumor shrinks, it's a good match.

Usually, chemo for breast cancer lasts about four months. It can be given once a week, once every two weeks or once every three weeks. The norm used to be every three weeks because the patient's white cells took that long to recover before the next dose.

Now they have (very expensive) shots they can give you to boost your white cells. There's a variety that you shoot yourself once a day for like five days. I think it's called Neupogen. I had Neulasta, which is a single shot from a nurse usually the day after chemo.

When you take these shots, you can have chemo every two weeks. In theory, it hurts the cancer cells more thoroughly because they haven't had as much time to recover. However, these shots make your bones hurt, especially the long bones in your legs. And I mean: "Hurt so bad you can't go to sleep without Percoset." But that only lasts a few days. Each time. <grin>

I've had breast cancer twice, two separate types of primary tumors, both triple-neg. The second one was not related to the first one. In 2005, I got chemo every two weeks. Four doses of adriamycin combined with cytoxin (sp?) and then four rounds of Taxol. 

Triple negs almost always get a taxane. The most common is Taxol. It can damage the nerves going to your fingertips and toes, but it works incredibly well on triple-neg tumors. The adriamycin can cause heart damage, so it was not a repeat option for me in 2007.

Instead, I got weekly doses of taxol and carboplatin. The weekly doses were smaller, so it was MUCH easier on my body. I got tired but that was about it. In fact, I only threw up once in 2005. They give you lots of anti-nausea drugs, so that isn't as much of a problem as it used to be.

I never really needed anybody to take care of me during treatment. I needed a ride to and from the appointment, mainly because they give you benedryl which can make you sleepy to drive home. My husband would drop me off (he was unemployed at the time) and pick me up when I called.

Some people like to bring a friend to chemo, but I just brought my iPod, some crosswords, a book to read, snacks, etc. My 2007 infusions took three hours, so sometimes I'd take a nap. It doesn't hurt going in or anything.

I've had two ports and, IMO, that's the way to go. Lots of my friends who didn't get ports have fried veins now, which makes blood draws from that arm almost impossible. The port itself is about the size of four half-dollars stacked up and it goes under the skin just below your collarbone.

It's like a drum with a rubber top on it, which gives the nurses a giant target for the IV needle. Tubing is threaded through the jugular all the way to the heart, protecting the vein from the chemo meds. In the heart, there's a pool of blood to dilute the caustic effects of the drugs.

If I knew I were only going to get four treatments, I might not opt for a port. Anything more, I'd definitely get one. I had eight separate treatments in 2005 and 12 in 2007.

Most people I know go to work during the four months of chemo, taking off a few days around each treatment. You're tired, but not incapacitated. Almost everybody loses their hair, typically about 14 days after the first treatment. It's kind of traumatic at the time, but it's really not that big a deal. Insurance will pay for a wig ("head prosthesis") <grin> but I just wore stretchy hats.

Hope this info helps!

--CindyMN

No problem!

Treatment sucks, but it isn't nearly as horrible as most people expect. A few people have a harder time with it than others, but it's really very few. It may help your mom to have a journal to write down her side effects, etc., so she can talk to her doctor about tweaking her pre-meds. Everybody reacts a little differently, but they've got LOTS of drugs to manage the side effects, so she shouldn't be shy about getting her side effect meds changed if needed.

In the chemotherapy category of BC.org's discussion boards, there are separate threads for each month that chemo starts. So there's always a group of women who are going through the same thing at the same time. You might steer your mom towards that.

I'm still friends with about a dozen women who all started chemo in October 2005. We meet every year for a long weekend visit. We've been to Chicago, Las Vegas and Seattle. This year is our fifth anniversary and we're going to Nova Scotia!

We're from all over the world: United States, Canada, Australia, Britain and Israel. And although two of our four triple-neg girls have had second primary tumors, we're all still kicking! <grin> 

--CindyMN