Some Basics about Breast Cancer
This page is meant to cover some basics and provides some resources. Wherever possible, I am going to link to more useful information, but thought I would share some of the things I have learned. They say Breast Cancer impacts 1 in every 7/8 people. One thing I recently learned is there are a bunch of different kinds of breast cancers and there are a variety of treatments that go along with those kinds. The initial shock of everything makes it very hard to digest and where to even start with how to ask for help. Being part of a Jewish community, no matter how religious or not, there is often a group of people who will help out in some way and help make going through the process much easier. Whether having a new baby, a loss of a relative or going through sickness for yourself or a child, it reminds you how amazing it is to be part of a community. Here’s a first stab at what I have learned and some of the helpful resources out there. If you have other ideas or resources that you found useful, please share.
A few basics to understanding a Breast Cancer Diagnosis
Once you have been identified with cancer, they will test the biopsy that they have done to see whether you are hormone receptive. They currently test for three things Estrogen, Progesterone, and HER2. You can be any combination of receptive to these or negative to all of them. For those who are HER2+ this only impacts about 20% of those diagnosed with breast cancer. And only about 5% are HER2+ only. And the percentage is less for HER2+ BRCA-, which is my diagnosis.
The National Breast Cancer Coalition has a list of terms that might be helpful in understanding the lingo and so does the American Cancer Society. In addition to those listed a few that are often used are:
- NED: No Evidence of Disease
- DMX: Double Mastectomy or BMX: Bilateral Mastectomy
- MX: Mastectomy
- AC: Adriamycin + Cyclophosphamide
- TCPH: Taxotere, Carboplatin, Herceptin, Perjeta
- DIEP Flap: deep inferior epigastric perforator artery (using fat from your tummy for reconstruction)
Sharsheret does a lot of advocacy work and programming about having genetic testing done. At our synagogue, they did a Pink Challah bake and also genetic testing for the BRCA Genes. Testing is helpful to know risk if you have a family history of any kind of cancer. You might have a negative result and still end up having cancer. If you haven’t done testing or your testing doesn’t cover current tests, your oncologist will probably order a full panel of testing after you are diagnosed.
There are a variety of tests that could be done depending on your specific diagnosis, genetic testing, family history, symptoms, and staging. Bone Scans, Pet Scans, MRIs, Onctotype, and MamaPrint to name just a few.
There are four/five stages, 0, 1, 2, 3, 4. What they are looking for is the size of the tumor, whether it has moved into the lymph nodes, and whether it has moved to another place outside of the initial placement of the tumor. BreastCancer.org also has a nice description of the different stages.
There are so many different treatment plans depending on your personal workup. There are some treatments that are similar. There will most likely be a variety of combinations and you might have some choice. Often the combination might include chemo, radiation, and surgery. Your personal workup will help guide where you start in the process. The path can be different depending on how aggressive the cancer is, how large it has gotten, and your personal family history. American Cancer Society provides some starting questions, but there are so many more. Sharsheret provides a nice flowchart and questions to ask.
What is a port?
Most likely if you are going to undergo chemo, you will need a port put in. Memorial Sloan Kettering Cancer Center has a great description of a port. Some people can’t wait to get rid of the port and some people want to keep them forever. Some people even give it a name.
What to bring to Chemo Infusions
Chemo process is different for everyone because there are so many factors that go into it. There are a lot of questions about what to bring. So here are a few ideas:
- Warm fuzzy socks
- Cold Cap stuff if you are trying to save hair this way
- Ice Gloves for those that are going to need to ice during treatment
- Your own pillow for back or neck support
- A blanket
- A Sweatshirt
- Head covering
- Coloring Book to relieve stress
- Work if you plan to do some work.
- Lip Balm
- Phone Charger
I worked through my chemo sessions. Took lots of conference calls, so I had a headset and my computer and chargers. I made the most use out of the time and it flew by. It felt great to be productive while you basically sit there. Other people just slept or chatted. And other people watched netflix or read books.
Lumpectomy / Mastectomy / Double Mastectomy
There are a lot of surgical options depending on the stage, type, family history, genetics, etc. Sometimes there is a clear path. And sometimes, the doctor will say, you can make any decision you want. That is probably the hardest decision to make. Hopefully, your doctor will be able to answer all of your questions, but there are always more. Here are some of the questions you might ask or thoughts that will cross your mind:
- Why would I get rid of a perfectly healthy part of my body that shows no signs of disease?
- I have a family history, so why wouldn’t I do everything I can to prevent this?
- I have no family history or genetic markers, but I never want to go through this again.
- What is the recurrence rate?
- I had a lumpectomy, but now am showing signs in the same breast, should I just do one or two?
- Should I go flat, reconstruction with belly fat, reconstruction with silicon, under muscle, over muscle?
- If I have a mastectomy will I have to wear a bra?
- Can I have immediate reconstruction?
- What is an expander?
- What is DIEP?
- How do the ports for the expanders work with the port for the chemo?
- What kind of implants do you use?
For me, it was a difficult decision to decide what to do. I just wanted to have things looks as normal as possible. Because I fall into a very small group there is no clear idea of what I should do. I am glad I decided on the bilateral mastectomy. I don’t know if I won’t have a reoccurrence, but my hope is that there is less of a chance. I found the waiting period between the mammogram and the official diagnosis to be the longest three weeks of my life. I hope never to go through that again.
What to bring to the hospital for surgery?
- For car: plastic bag, water bottle, Car Pillow
- Check-in: Insurance card, Id
- Leave at home: valuables
- Advanced Directive
- Admission Papers
- Hard candies
- Toothbrush and toothpaste
- Reading material
- Comfort pillow
- Shirts that zip or fasten in front (you won’t necessarily be able to lift your arms)
- Elastic Pants
- Slip-on Shoes
- Front closing bra (hospital may give you one)
- Bathrobe or Apron for Holding drains
- Shoelace or Landyard for holding drains
- Cell Phone & Charger
- Drain Chart
- Pill Chart
- Lip Balm
- Nail Clippers
- Back Scratcher
- Grabber to Reach Things
- Fuzzy Socks
- Head covering / Beanie / Hat
- Water Bottle
- Uber eats for the person who is with you.
It’s a good idea to get a bra or cami that has pouches for the drains. Many people recommended button down shirts, but I couldn’t move my arms to get into the shirts, so a cardigan over the cami was all I wore for several weeks after surgery. Glad it wasn’t too hot. I was also gifted a drain pouch, but you can go to home depot and get one of their mini aprons to hold the pouches. Ask about Physical Therapy, it has really helped with gaining back motion of my arms. It might be difficult to get in an out of bed for a couple weeks, so a very comfy recliner is great.
For me, radiation was probably the easiest part of the process. The biggest thing is it is daily and just hard to plan around. I didn’t get my official timing until the day I started and so it was hard to plan days. The process was anywhere from 5 minutes to 20 minutes if they had to take films. Because my cancer is on the right side, it was super easy and I just had to stay still for the entire time. On the left side, you have to hold your breath during the process so that no vital organs are hurt. Throughout the process, my skin was fine. It wasn’t until the week after that it blistered, but it healed pretty quickly.
They recommend applying cream multiple times a day. I have seen Aquaphor and Aloe, but my radiology oncologist recommended calendula. I was able to add it to my subscribe and save and ordered 2. One to keep at home and one to keep in my purse.
There are a lot of helpful resources out there. Here are just a few:
- Your insurance company might provide a nurse/social worker to help navigate the insurance company, do check-in, or just check in on you. Some insurance companies do this while you are pregnant. It’s usually a free service and gives you a person to ask questions to.
- Your work might provide benefits for Mental Health/Counseling through their employee assistance program. It might even cover family members who are navigating the process with you.
- Sharsheret provides a ton of resources. They provide books, reading, and a busy box for your kids to help them get through the process. They also assign a person to check in with you and help you find resources.
Talking to Kids
My husband, Ari Yares has put together some resources for how to talk to kids and some books to read.
Donating Your Hair
When my grandmother was going through cancer treatment and wearing a wig, I had an interesting experience. We were walking back to their hotel from My Most Favorite Dessert Company in New York and some woman stopped my grandmother and told her she looked so beautiful and wanted to know where she got her hair done. My grandmother had a different kind of smile on her face but explained to the woman that she was wearing a wig through her insurance company. After that day, I began donating my hair and have done so about every 18 months since 2003 and am about to donate for my 10th time. I have donated at least 8 inches each time, but this last time I am donating 14 inches. Family members might feel like they want to do something and one thing they can do is donate their hair.
When we cut my son’s hair when he turned 3, it became a family affair and myself and my oldest daughter also all cut 11 inches. What was meaningful about his haircut is his Hebrew birthday fell on my father’s birthday. My father passed away from cancer and we were able to donate 33 inches of hair in memory of my father. A couple of months later my 2nd daughter also cut her hair and we donated another 10. We donated to Zichron Menachem, but I have also donated many times to Pantene Beautiful Lengths, which unfortunately no longer takes donations.
- Wigs for Kids – 12 inches Minimum Donation, but 14 Preferred
- Chai Lifeline – 14 Inches
- Wigs & Wishes – 12 inches
- A Child’s Voice Foundation – 12 inches
- Zichron Menachem in Israel – 11.8 inches or 30 cm
- Wigs 4 Kids – 10 Inches, but will take 7 – 9 to make shorter hair or boys wig
- Children with Hair Loss – 8 Inches
- Matter of Trust – This is not for wigs, but environmental cleanups. They ask for a minimum of 3+ inches and they can take any kind of hair.
Covering your Head
You might have already been wearing a sheitel/wig or tichel/scarf/wrap, but for some of you, it will be something new. One suggestion if you decide to shave your head and don’t want to shave it yourself is to find a place that specializes in military cuts. They might do a better job. There are a number of salons that will also shave you for free depending on where you are in the country.
- Wrapunzel Foundation
- They provide starter kits for those diagnosed with cancer and will be losing hair because of their cancer treatment.
- They also provide spa workshops that help people learn how to wrap.
- Their storefront has beautiful wraps to purchase as well and there is a network of people on Facebook who wrap and are willing to give you support.
- Essential Items for wrapping might include:
- Some basic wraps:
- Regal Wrap
- Beginner Wrap
- Regal Wrap
- A turban or beanie might be helpful
- Good wishes provide free caps to people and might be easier to wrap.
- Headcoverings Unlimited is not free, but they have easy to go caps that can be put on.
- A great opportunity for someone supporting you is to have them knit or crochet a cap. There are tons of free patterns out there for various chemo caps and this is an easy way to let someone support you. Plus if you find someone really talented you might have awesome hats to wear when your hair eventually grows back.
- The facility where you are undergoing treatment might have a place that you can purchase or find a wig. Some of these facilities work with E-beauty. Which you can also find wigs through their website if you don’t have access to an onsite location. Another donation opportunity is those that have wigs can donate their wigs and they will be redone by a salon-like Paul Mitchell and repurposed.
- Your insurance might have specific stores that they work with.
- If the store is more than 30 miles away (may differ by the insurance company), you can have your doctor help you apply for gap coverage. If approved, the insurance company might allow you to go somewhere much closer.
- A wig gemach. If you are in a religious community or have one nearby, there are often gemachs just for wigs.
- You might want to also find a Sheitel Macher who is a specialist and would be helpful in helping you choose the right kind of wig for your needs.
- There are a bunch of wigs available through Amazon, Aliexpress, etc. There is even a Facebook Group that might help you in finding a wig called “Wigs you wished you own but can’t afford.”
A port is often placed under the skin and you are told to wear a V-neck, Button Down Shirt, or there are chemo shirts. The chemo shirts might have been great for breastfeeding also, but they give easy access to the port.
Blogging, Meals, Carpools, Playdates, Grocery Shopping, Walking the Dog, etc.
When you let people know, chances are they will want to help in their own way. You might be overwhelmed and not sure where to begin. You might have a lot of energy or none at all. Your caregiver might be exhausted and so it’s a great volunteer opportunity for someone else or a group of people to help coordinate everything you need.
- Caring Bridge – If you want to journal and keep everyone updated, this is a great place they also provide a place to organize things.
- Lots of Helping Hands – This is built for organizing everything in one place.
- Google Spreadsheet – With sheets for all the needs. It’s easy to update and you can give access to everyone through a shareable link, so one less login.
- CareCalendar – We used this to help with babysitting, playdates, dog walking, and providing meals for a friend.
- Take them a Meal – Meal coordination
Support in Groups or from Other Cancer Survivors
There are a lot of places to find support depending on what you are looking for.
- Your synagogue might have a number of people who are survivors. Some synagogues even have formal and informal support groups. It might be good for you and your spouse/partner (if you have one) to connect with other people who have gone through the process. Even if their process was different they will share things you never thought of and are great resources.
- Your hospital or cancer treatment center. There are often free groups that get together and talk. There are often groups for people going through the treatment and then those in remission or have no evidence of disease (NED).
- Facebook Groups. There are a lot of specific groups for type, ethnicity, or even locality. Here are just a starting point:
- Breast Cancer – I got this!
- Breast Cancer – Women Supporting Women
- Young Women with Cancer – Australian Based
- Her 2 Positive Groups
- Jewish Cancer Warriors – This is only for those in treatment or surviving. It’s for Jewish women who are patients or survivors.
Kits, Gifts, Etc
There are a number of additional ways that you can request support or friends can brighten up your day
- Hope Kits from National Breast Cancer Foundation. They are backlogged, so they are not currently taking any new requests for free kits, but someone can send you a kit.
- Breast Cancer Kits from Pinked Perspective. Someone can send a support kit.
- Care Package Ideas. Friends might be far away and looking for things to send. There are a number of ideas here on this Pinterest board from the National Breast Cancer Foundation.
- Elana Designs LLC and her awesome Breast Cancer Warrior String Art. She is a very talented designer and her piece is an awesome gift for anyone going through breast cancer.
Mishaberach, Tehillim, Prayer
Another way friends, family, and other people can help out is through prayer. To do this they would need to have your Hebrew name (Your name bat Mother’s name). Many synagogues also have Mishaberach lists that you can be added on.
- There are many people who take challah every week and will keep you in your thoughts when they take challah. People are constantly posting on I don’t cook but I give out recipes for names of people. There is also a WhatsApp Called Taking Challah send names or Hafrashas Challah that has a list of people.
Cleaning for a Reason will match patients with local cleaning services to provide house cleaning.
If you are a knitter, there are a number of ways to support people going through cancer treatments. With chemo, the patient will most likely lose their hair. My mom was able to help from far away by just knitting a bunch of beanies that I could wear throughout treatments to cover my hair. Now that my hair is growing back in, I have cute winter hats. It’s such a small act of kindness but really makes a huge difference.
You can also make knitted knockers. You can download free patterns on their website. There are patterns for knitters and crocheters. Great for those who have a full mastectomy with no reconstruction.