mom getting double mastectomy for spindle cell

missourimom

Hello all ! I am new here and could really use some support.

Leave it up to my mom to get the most rare form of cancer there is - spindle cell. I typed in spindle cell in the search bar and there is nothing on it! In fact when I google it, there really isn't much there - just a bunch of medical jargon that is way above my comprehension. They are doing surgery this Friday - a double mascetomy with lymph node removal and breast reconstruction. I know that this surgery is done all the time with a high success rate, but I am still very scared for her. I know she is terrified.

The one thing that really worries me is the risk of infection afterwards. Having cancer lowers your immunity, so what do they do to use extra precautions against infection?

After the surgery she will be undergoing chemotherapy (the kind that makes you sick and lose your hair) & direct radiation. She is getting it all 4 ways! I am glad that they aren't taking this lightly and are treating it aggressively - but what if it is TOO aggressive? It's killing me to know that my moms life is in the hands of a total stranger who is going to discect and cook her. (I know it sounds bad, but it's reality!)

Does anyone know the risk factor percentages of the surgery and chemo?

A lady from my work was recently diagnosed with colon cancer. They began treating her aggressively with chemotherapy - but it went all wrong and wound up frying her intestines. She died this last weekend. What's to say they aren't going to fry my mom?

Hattie

Your mom's doctors can answer these questions--they are working for your mom, so she should not hesitate to ask. It's their job to take care of people in this situation--I found it reassuring to have competent trustworthy docs. Surgery, chemo and rads can be very very effective in getting rid of cancer. I've been thru them all, and so have many others here and elsewhere--they are all doable (scary to think about, but not that bad in actuality). If your mom is in good health, that helps getting thru everything. Most people do not get post-surgery infections or bad side effects from chemo. Read on the home page here about each of the treatments. Try not to worry about other people's experiences--they will not be your mom's.

Take care,
--Hattie

Anonymous

Hi ravenstar,
Sorry to hear about your mom.

If you really want information on the spindle cell you might call the ACS and tell the person who answers the phone you would like an Oncology Nurse to research this for you and explain it. This is a free service and the Nurses are VERY thorough and break things down well.

1-800-ACS-2345

Good Luck

Shemp

Hi Raven, I'd not worry too much about the mights and coulds, as unfortunately, these treatments are all too common anymore. I don't know how much cancer really effects your immunity, as it's the chemo that really brings down the white blood cell counts. I'm sure the surgery will be fine, as will the other treatments. That's not to say that enduring any will be easy, but the outcomes are highly likely to be positive. I wouldn't let your coworker's experience worry you much. You'll probably be impressed with the technology and precision that goes into today's radiation therapy.

I'm big on advocating you get second, and maybe even third opinions. It made my wife and I more comfortable. Everything has a risk factor, including the choice of how aggressive you want to be. This is a good time to go to a teaching hospital that's alsa deemed a "National Cancer Institute." It was very reassuring to hear opinions from two major university hospitals match those of our local doctors. http://www.cancer.gov/cancertopics/factsheet/NCI/cancer-centers

Good luck to your whole family. Check in around here as often as you need.

cowgirl

Raven I have not heard of spindle cell, I will try to google it for you. I worked for doctors, so some stuff sounds weird to someone else sounds normal to me.

I can tell you her course of treatment is aggressive, but you want that. Colon Cancer is treated very different from breast cancer, I have a colon cancer friend that is a survivor. But he had a very hard road, so don't really compare the two except that chemo makes you sick.
Spindle Cell Breast Tumor

Okay from this site it says that they treat it, and follow up with either chemo or tomoxifen, and those on the study(very few as it is rare) none had reoccurance.

So while it sounds scarey her prognosis sounds good.

I love to google!

missourimom

Thanks all for the info and time spent responding!
Mom had her surgery last Friday and she is home now recovering very well. The recovery time is 8 weeks, then after that she will begin the chemo. I've been doing a lot of shopping for her getting scarves, wigs, eyebrows and eyelashes. Hopefully that will help to make her feel a little better.
My step dad is going away for the weekend on business and I will be staying the weekend at her house to take care of her. I am a little nervous, as I am going to be in charge of changing her dressings and emptying her tubes. (ACK!!) Wish me luck that I am able to do this without messing up and without showing any signs of being grossed out!

cowgirl

It really is not all that bad I promise! I had two drains for over 2 weeks, the first night my DH went back to work my drain stopped up again. My middle kid helped me clear it, if he can do it you can too. He was 11 at a the time! Keep up her pain meds, tell her I said so. I tried to come off them to quick and that was a bad move. So for now keep her comfortable and well hydrated!