I love my mom and am looking for answers

[kiki]

Hi. My mother (54 years old) had a mammogram this fall that came back iffy. A second mammogram saw microcalcifications in her left breast. About 10 days later she had a biopsy that confirmed she had DCIS. We were happy (well we weren't scared)....the best of the worst and it was Stage 0.

My mom always said that if any cancer was found she would have a double mastecomy. This was done in early December....and god bless her surgeon. The "blue die" wasn't "taking" so while she was in surgery her surgeon dug around to look for lymph nodes that did not look so great. She did find one, a frozen biopsy was completed and they ended up taking out 15 total lymph nodes, of which 9 showed to have cancer. The nodes were taken from her left breast where the DCIS was. Her right breast was clean.

The DCIS and the cancer in her nodes were separate, it was not invasive DCIS.....

My family went from thinking she had stage 0 cancer - "Not much to worry about" to Stage 3 HR2+...."wow."

In addition to knowing she is HR2 positive, I donn't know anything more.

I went with her to interview oncologists and she starts chemo this week with the Doctor, she, my father and I were most comfortable with.

I have heard she will be tired, etc... during chemo, but being that I have never known anyone to go through cancer, I don't know what that means. I am an adult, 28 years old, and this is so very new to me.

To date, the hardest part is seeing my rock, my mom, so broken by everything. I am the oldest of five, the youngest is 17...and I am the one now who is taking on the "lemons into lemonade" roll.

So.... a couple of things......

What do I expect during chemo?

What questions should I be asking her and her oncologist?

What do I expect of her cancer and possibilities for living a full life...I realize this is a difficult question to answer? (we don't believe it has spread anywhere - besides the 9 nodes it was found in - she had her heart scan, bone scan and cat scan last week and we have not heard the results)

AND FINALLY after reading some of the postings on this site, I cannot even begin to tell you what wonderful people you all must be....and I truly mean this with all my heart. My mom is known as the strong person....not just in our family, but in her circle of friends, etc..... and I see her so temporarily damaged by this (I think she is still absorbing it all) and I give you all so much credit for being as strong as you are. I honestly mean this. Sometimes people need to know they are appreciated and I appreciate all of you for showing your strengths, weaknesses and knowing their is more.....

Mary Kate

P.S. - I am sorry for any misspellings :-)

[Bev]

Hi Mary Kate,

Sorry about your mom. Sorry you have to make lemons at such a young age.

I think doing the research for her will be a great help. I lept in and did my own research. When you don't have a clue what you are looking for, some of the info you find can be scary. Driving and hanging out at infusions and cooking dinner are also useful.

Everyone has different reactions to chemo. It can be very bad for some. Most us find it not as bad as we expected, but not fun. Emend for nauseau, colace etc for constipation. neulasta or procrit for counts. For the counts though I would recommend avoiding nuelasta if you can as it makes you feel really crappy. Even if your Mom is a rock, she is gong to be on an emotional roller coaster. In the beginning I needed sleep aids, only did them a few times. Then I asked for anti-depressants for anxiety. Long ago I thought people who did pills were just off-balanced. Not long into this journey, I came to the conclusion I needed to sleep and function.

The next step I think would be to post her full path, grade, Er, Pr, etc and the oncs recommendation. Herceptin is a must. I don't remember anyone on board with stage 3 DCIS, but I bet there's at least a few.

The beginning is the hardest. Hang in there. Bev

[Bev]

Hi Mary Kate, just reposting so your question stays up. BB

[VirginiaGirl]

Kiki - I'm sure you've been reading a lot on the Web and here. There's a lot of good info, but it can be scary to read the stats. Remember, though, the excellent point that these stats are primarily pre-Herceptin, lots of meds out there to try and more being tested. If your mom is the "strong one," and now you are taking on that role too, it may be difficult for her/you to ask for/accept help even though there are genuine offers. As you probably know, people feel helpless and need to do something concrete and practical. At first I was reluctant, but I've discovered that I love being sent meals for my freezer, even though most days I feel great and have continued working full time. Dealing with the emotional needs of my immediate and extended family at the same time as my own, recognizing that they need things/time from me to talk about it or even just hang out together even when I didn't feel up to it has been hard at times. Sometimes it's all you want to talk about and other times the last thing in a search for feeling "normal" for a while. Remember to take care of yourself, too! Despite the hardships, there are a lot of good things that come from this journey, and many blessings along the way.
Peace,

[kari]

Hi Mary Kate,
So sorry about your mom. You all will be starting a long, difficult journey, but it sounds like there is a lot of strength and determination in your family. I strongly believe that positive attitude, faith and the love of family and friends are some of the biggest factors in fighting this disease.
As the other posters said, there is a LOT of information and support out there. It can be overwhelming at times. I am almost 1 year survival of stage IIB IDC, so I can certainly empathize with what you and your family are going through.
Be sure to have someone go along with your mom to every appointment, as two (or more) sets of ears are a big help. Write down your questions (no matter how insignificant or silly you may think they are) and the answers, so you can review them at a later time when your mind isn't so frazzled. Get printouts of the chemo drugs she'll be on, which should tell you potential side effects. I kept a diary of all my treatments, including how I felt (physically, emotionally and mentally), meds (whether they worked or not), questions to ask, etc.
There are a number of different combinations of chemo treatments, each having its own set of side effects. Your mom's onc may give her an option regarding drug choices, or he may already have the course set up.
I was on AC chemo, every three weeks for four cycles. I was not given "dose dense" (every two weeks, with a drug to increase white count). Even at three weeks, my last two treatments were deferred due to low white counts. Once I told the chemo nurses about my severe nausea, they gave me a stronger anti-nauseant, which helped greatly. Hair loss came just before my second treatment. I felt tired, but not overly so. Loss of appetite, because food and drink just didn't tast the same. Small, frequent meals worked best.
Don't be afraid to let other people help in any way they can. Most people want to "help", but don't really know what they can do. You won't be able to do it all yourself and now is the time to call on others to shoulder some of the load, such as laundry, clean the house, provide meals, drive to appointments, grocery shop,etc.

My prayers go out to you and your family. Keep us posted in the days ahead.
Karen

Lumpectomy-Dec9/05;
Dx Dec 16/05-Stage IIB IDC, 2.2cm, grade 3,ER+/PR+, Her2+++;
Mastectomy&SNB-Jan 11/06 (2 nodes +);
Axillary Nodes-Feb6 (all 17 neg);
4 rounds AC-Mar6;
4 roundsTaxol-June20;
25 Rads-Sept26-Oct31;
Tamoxifen-Nov5(for 2-5 yr);
Herceptin-Nov16(for 1 yr);
Surviving!
"The Good Lord gave us mountains so we could learn how to climb!"

[kiki]

Bev, Thank you. I will be sure to get more information from my mom and/or dad this week...so I know more and so I know what questions to ask. Chemo starts tomorrow. I am sure you understand, this past month has felt like 10 years and I am THRILLED we are here and finally starting Chemo. Good news - My mom's bone, cat and heart scans came back and all looks good!!
Mary Kate

[kiki]

Kari, thank you for your words and congrats to you on 1 year!!

My dad and/or I have been at every appointment so far (mostly my dad) and one of us if not both will be at all future appointments.

I am not 100% sure what my mom's chemo cycle it is, but it set up for 4 treatments every 3 weeks. She met with her oncological surgeon today (not her oncologist who will be her Doctor during chemo) regarding the two week vs. three week apart treatments...and the drug given to increase her white blood cells if she were to do two week cycles....tomorrow is her first chemo session and she is going to speak to her oncologist about this.

My mom also met with an herbalist and obtained herbs to help with the chemo side effects. We are a conventional medicine family and this will be a first. I will be sure to let ya'll know about the herbs and how they work. However, she is still not 100% sure she will take them, though people she knows did while undergoing chemo. She wants to check with her obcologist first since she heard there was a study completed stating foods/herbs that were high in antioxidonts did not only help "the good cells" but also may "help" cancer cells grow. I do not know if this is a fact. But that is what she heard...

Thank you Kari and and to you too Bev!!
Mary Kate

[kiki]

Liz, thank you for responding.

The emotional issues have been, at least for the last month have been 90% of the pain she has gone through. Now with chemo starting, we are so happy it is finally here and so sad for the pain and other feelings she will go through. Just in the past few days I have seen a difference in her. We received the results of her bone scans/cat scans, and all is positive....I am starting to see a sliver of my rock again!! As time goes by and she is able to accept more emotionally the better she is and the better I know she will be in beating this.

After my mom had surgery it was overwhelming for her the care and support and frozen dinners she received. I think it was hard for her to see how many people cared and were concerned for her and our family. BUT, my two brothers have been home from college for Christmas/Winter break and wow! They were so happy about the frozen dinners, that it kept my mom's spirits up...seriously, my family is quite comedic and the dinners did add to it. :-)

I told my parents I would make dinner a few nights in the next week and a half. I guess with tomorrow being her first chemo treatment we are all waiting to see exactly how things will be. My mom was told you get a metallic taste in your mouth during chemo and to mix up the foods you eat with some flavored candies, etc... My dad has three huge (huge huge) bowls in their house with different flavored candies - Cinnamon Hot Tamales, Jolly Ranchers and Tic Tax/Mints.... it is very dear to see how he is trying to help.

Take care....and THANK YOU for responding!
Mary Kate

[4evergrateful]

HI having the meals prepared so mom doesn't have to make them is a big help.
a few freinds had brought over meals for the first two weeks I found myself being weak after treatment. I also found when I rec'd the injections to bring up my blood count my bones pained me alot and then I really needed to have the meals cooked I mostly wanted for myself a cold drink I had alot of oranageaid snapple that gave me energy and it was soothing sometimes a yougart or ice cream I also found that carbs affected the hot flashes more then if I didn't have them anything with white flour makes them worse so rice, pasta, potato all made me feel worse. Zofran is a medication that helps with nausea the Emend is a trifold 3 day pack to be taken the day of treatment and two days after
Zofran is to help with nauea on in bet. days of treatment saltine crackers also help I never had to regirgate druing treatment just felt extremely weak I had a Dx. of HER-2 breast cancer not in the lymph nodes but it was invasive in the wall to my surprise bec. I had a mamo every year and with last year mammo July 25, 06 it was suspicous and my sonogram turned out normal I was told I can wait 6 months and watch to see if the calicification forms but I went with my gut and had a biopsy sure enough it was cancer Grade 3 but stage 1. I thank God I had the mastectomy. I went through 4 months of chemo and now I am on Femara I take my cancer marker test on the 13th that will be my 1st check up after completion of chemo now it is every 3 months and as the date approaches I feel anxious just hoping it is normal.
This is my first posting on this sight my name is Elizabeth hope this info is helpful take care