Did anyone choose NOT to do chemo?

sherryjananderson · August 2008

My mom just learned she was triple negative after a mix up at the path lab. We were originally told she would not need chemo and are now told that is her only option. She's wondering if there is anyone out there who is also triple negative who chose not to get chemo.

HeatherBLocklear · August 2008

Hi Sherry,

First question: why would you mother even consider not doing chemo? Is she over 90?

Second question: Has anyone suggested to her that other options are equally viable?

Triple negative BC is very aggressive and needs to be addressed as rapidly and forcefully as possible. The GOOD news is that triple negative reacts so very, very well to chemo. Most of us see a dramatic decrease in our tumors after we've had chemo.

Please urge your mom to go the chemo route. If possible, also ask her medical team if she can get Avastin.

Let us know what you all decide. We really do care.

Love,

Annie

sherryjananderson · August 2008

She's in a lot of pain already from arthritis, which has disabled her, and she just doesn't want to go through any additional pain. She had a mastectomy (2.4 cm no node involvement). The sentinel node injections were extremely painful. Then about a week after surgery she had an infection that hospitalized her for a few days. She now has a wound vac that she's had for about 2 weeks. Now they tell her she has to get a port (yet another surgical procedure) for the chemo. It's been hard to explain to her why she needs chemo since her surgeon told her that if she has a mastectomy there's a good chance she won't need chemo and definitely no radiation. She was led to believe (through a mistake at the path lab) that she wouldn't need chemo according to our oncologist. Then they reversed their decision a week later. At this point, she's skeptical of everyone. Our family is telling her she has no choice but she seems to think that she's going to get recurrence anyway so what's the point. She's not in good shape either mentally or physically. She's terrified of chemo. I'm not sure what to do. She's afraid she's going to get another infection from the port or that they are going to prematurely take out the wound vac because it's now been four weeks since her mastectomy and they need to start chemo soon. Any suggestions for convincing my mom would be greatly appreciated.

jeanne46 · August 2008

Sherry,

I have a few suggestions for your Mom regarding chemo advice. One is to contact your local chapter of American Cancer Society - they have a program called Reach 2 Recovery and you can request a visit (if your Mom is up to that) from a volunteer who had undergone chemo. It might help ease your Mom's fears if she can speak with someone who has had direct experience.

Another suggestion is arrange for you Mom to speak with the chemo nurses (at her oncologist's infusion center). They have a lot of experience with chemo and might be helpful in assuring your Mom that chemo CAN be very doable.

The other suggestion is to tell your Mom that she can always try chemo - and if she finds it too awful, then she can either decide to quite or make some other kind of adjustment. Most importantly, I think you Mom needs to have a good talk with the oncologist and make sure it's someone with whom she has confidence and trust.

Best of luck to your Mom and to you! She's lucky to have you as her advocate.

spar2 · August 2008

Having the port put in is really not bad and it makes chemo pain free since they don't have to find a vein to stick each time. Hopefully she will get some good advice and do the chemo.

IsabellasMom · August 2008

I refused chemo. I thought I was different. I needed my energy to take care of my then 1 year old. I wasn't going to have chemo. I had a bilateral mastectomy. I thought since they took them both, I was clear. I was wrong. Less than 1 year later, I was diagnosed with a regional recurrence (internal mammary node). I then did radiation and chemo. I got through it. I'm glad I did it, although I wish I never have to do it again. But, what choice did I have. I had to live for my little girl. Does your mom know how much she is needed and will be missed? Maybe a little reminder is all she needs.

LuAnnH · August 2008

Is this her first breast cancer? The reason the onc may have changed is mind is based on the pathlogy of the cancer. Sometimes a surgeon will glance at a tumor and can give you an idea of what it might be but until they run the pathlogy they don't know for sure. So I bet someone gave you info based on what they thought was going on. Then when the path results came it, the cancer could be more aggressive or more advanced than they thought. That would change thier opinion on whether to administer chemo or not. If you are not 100% comfortable with this onc opinion you could opt to see someone else to get a 2nd opinion. Lots of people do that and I highly encourage it.

bar62 · August 2008

I am almost as afraid as your mom of full blown chemotherapy...I will see my Oncologist first time this Thursday. I am Diabetic, with subacute cutaneous Lupus, Non serologic Rheumatoid arthritis in remission, Fibromyalgia and a few other dxes thrown in for good measure.

I will think about all the advice given to you here when I meet my Onc MD and try to be brave for my son. I had a horrendous reaction to the Methotrexate I took for my RA though it worked; it stopped the horrid pain and prevented any deformities...my brain drain was awful but I love the pain relief.

sherryjananderson · August 2008

Thanks for everyone's comments. I think my mom will be getting chemo. It's starting to become clear to her that she doesn't have a choice. And I read off the responses here to her, which I think helped her a lot. As far as the change in treatment...,my mom's info was accidentally switched with another woman. the secretary at the path lab input the wrong data into my mom's hospital record, which is what our oncologist was looking at when he told my mom what treatment she would need. The mistake wasn't noticed for a week until our oncologist received the original out of state lab report that didn't mesh with what the local path lab had sent him. To add insult to injury, my mom's case was taken to the weekly cancer conference and presented with the wrong information. Some of the people at the conference noted that she had a high grade tumour with extremely high positive (over 90%). They thought it was a tad unusual but didn't think to double check her info. She was initially told she was pos, pos, neg but was later confirmed to be triple negative.

HeatherBLocklear · August 2008

Hi Sherry,

I had surgery yesterday, and am still feeling a bit woozy. However, there were a number of people on these boards I wanted to keep up with, so here I am, checking in on you and your mother.

All I can say after reading your last post is -- THANK GOD! I am so happy and relieved your mom is seeing the light. This means you get to keep her for many more years to come. What a blessing for all of you.

I know better than most what it means to think one has a specific diagnosis, and then to find out that there was a mistake. My triple negative was initially diagnosed as a benign condition (there's often a bit of confusion about triple negative tumors because they are rare and therefore puzzling to professionals who may not have seen a lot of them). So I went from thinking I was OK to knowing I had stage III cancer, and a very aggressive one, at that. So yes, I do understand her shock as well as her initial unwillingness to go through chemo. It's tough; nobody enjoys it. But, on the other hand, it means the difference between life and death.

Give your mom a big hug from me and tell her we love her. Ask her to come and post here herself; we will rally around her and give her the support she will need now.

Love,

Annie

Did anyone choose NOT to do chemo?

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