You Are Not Alone… Breast cancer community education and support
I will go with you from diagnosis, through treatment to survivorship!
About Your Cancer Navigator
My Mission
Hearing ”you have cancer” is one of the hardest things you will ever hear. I know how scared you are.
I have survived cancer twice, being diagnosed in 1992 and again in 2012. I am also an oncology RN.
I have shared this information with countless patients through the years. Patients have found it invaluable to have both my personal and professional experience to help them.
I want to help you too.
Betsy
Breast Cancer…“Brest” Friends Project
Brest Friends Inc is a 501(3)c nonprofit organization!
I am a firm believer that early detection saves lives.
I will provide community education to teach about self-breast exams, risks factors, genetic factors, etc.
This information isn’t just for ourselves…but our daughters and granddaughters.
I hope you will invite me to share with you and your church ladies, your book club…wherever you will have me. So let’s get together and be brest friends.
This is free.
a 501(3)c
I‘m in search of breast cancer survivors to photographed and their stories shared in a fundraising calendar.
Call or text me; 304-989-4498 breast care health education breast cancer education
My Approach
I have been where you are…I have experienced the fear and the stress that comes with a cancer diagnosis. I understand, and can talk the talk. I will provide you with honest conversation, and a compassionate ear for you to share your thoughts and concerns.
Topics…
Newly Diagnosed…now what?
One of the hardest things you will ever hear, is that you have cancer. How are you react to the news, and subsequent treatment, will be from any experiences you have had or heard about from family and friends.
I know your first thought is “oh my God “, your hearts sinks, and fear creeps in. One of the most important thing you can do is to get as much information you can about your diagnosis and treatment plan. There may be things you don’t want to hear that you need to hear everything involving your care.
I know your mind is racing with the “what-ifs”. You can’t do that. Focus only on what you know is true. The what-ifs will drive you crazy. Don’t allow yourself to go there.
As you are being told of your diagnosis, you will be told that you will need further testing to see if the cancer has spread to other parts of your body. That is important information. Your doctor needs to know to develop your treatment plan. When you had your biopsy, the tissue was sent to pathology for further testing as well. It's your pathology report and radiology studies that allows your doctor to stage your cancer. It is with that information that they determine your chemotherapy and/or radiation treatment.
it is important that you do not leave the doctors office without understanding what you need to know. Everyone that works with cancer patients understands how stressed you are right now. It is OK to ask the same question multiple times if necessary. We know you are being bombarded with information and are feeling overwhelmed. Many feel that the doctor, or nurses, are too busy to be bothered with your questions. That is not the case we are never too busy for you. .
Once your friends and family find out about your diagnosis, they will want to rally around you and offer support. Don’t be shy about accepting. You will find others will want to do for you, but not really know what to do.
Most will steer clear of talking to you about your diagnosis. They’ll tell you, “oh, you’re a fighter “, or “you’ll be fine", and so forth, in an attempt to make you feel better. Although they meant well, I felt they were blowing me off. I wanted to talk about my cancer...I was scared. I wanted people to talk to me about my not so good days, let me tell you about my treatment, etc. I later realized that those that love you are scared to. Sometimes it was their fear that prevented the honest conversations that cancer patients long for. Tell those around you that it is OK to talk to you, in fact, you would appreciate it.
Choosing your doctor…
You initially saw your primary care physician who referred you on to the surgeon. Now the surgery is completed you’ve been referred on to an oncologist; your cancer doctor.
it is crucial that you trust your oncologist, as well as the treatment he has planned for you. You need to feel confident that you receive the best, and the most appropriate care. Should you have a recurrence or a new cancer crop up, you can feel that you did all that you could’ve done at the time.
Do you go with your local doctor, or go to a larger cancer center in another town? It is totally your choice. Again, you must have confidence in your cancer care.
However, there is something to consider. If you have cancer that is better treated elsewhere, they would refer you to an oncologist that specializes in that one certain cancer. The point is that all oncologist are highly trained in their specialty. You may want to consider your hometown doc for two reasons. Firstly, your support system is at home…you will need them. Secondly, the cost. Your cancer treatments are covered by your insurance regardless of facility. You will have multiple trips for treatments and doctors appointments. You may have to pay for motels and food. Cancer is very expensive to treat and put many into financial ruins.
I just wanted to make sure you are aware as you are deciding on your treatment path. With all that being said, I can’t stress enough that it is critical that you are confident in your choices.
Treatment
It’s time for your first oncology appointment. You’ll sign in and take a seat…you can’t help but survey the others waiting for treatments or doctor appointments. You noticed the wigs or scarves, a gentleman wears a surgical mask, a daughter helping her weakened mother into the waiting room. Nervousness increases as you wonder what will be your story, your journey.
You will be placed in the examining room. Your height/weight along with your vitals are charted, then you sit and wait on the doctor. It won’t be unusual to just have a sick feeling being there, you want to be anywhere, but there. For most, the feeling will never go away.
The moment has finally come that you meet your oncologist. Your doctor will talk to you about the details of your pathology report. Treatment options will be discussed at this point. The choices are chemotherapy, radiation, hormone therapy, immunotherapy, or targeted therapy.
Surgery for some is all that is needed, and most likely has already been completed. Even if no treatment will be needed, anyone with a cancer diagnosis will still need to be seen and followed by an oncologist.
CHEMOTHERAPY...
So, what will your chemotherapy day be like? Once you are called back to get your treatment, the nurse will access your Mediport or PICC line, or start an IV. They will draw some blood to make sure you are ok for your treatment. It something is off, it is dealt with before you can continue with your treatment. Once everything is established it's ok to proceed, your nurse will administer the "pre-meds" through your IV. Those are given before each treatment and most likely consist of a steroid to help lower your immunity, nausea medicine to help keep the nausea at bay. Ther may be other meds given as prescribed by your physician. Once those medications are completed, you will receive your chemo.
The chemo will be just like receiving any other IV fluid...you won't feel a difference.
Depending on your chemo regiment that will determine how long your treatment will last. It might be an hour or could be five to six hours. Each treatment will be the same for each cycle. Dress warmly as it tends to be cool, and you may feel cold while receiving your treatment. You could bring a throw or the nurse can get you a blanket if you need it. You will be in a recliner and most facilities have individual TVs and magazines to help you pass the time. You could listen to music and relax. You may opt to take a nap. The staff will provide you with snacks and drinks, so don't be shy in asking.
Chemotherapy comes in various forms and is based on your pathology report. Most of the time it is a combination of drugs...this is your regiment. It is referred to with a letter that is standardized so that any healthcare professional will know what the letters stand for. For example, one regiment I took was TCH. That stands for the drugs Taxatere, Carboplatin, and Herceptin.
For forty-eight hours after your chemo treatment your urine is considered hazardous. If you are caring for someone, be sure to wear gloves if you have to empty any urine. If you go to the bathroom in the toilet, you don't have to do anything special...just be sure to flush after each time you go.
RADIATION...
You will see yet another specialist for your radiation treatment...it is a Radiation Oncologist. They will determine the dose of radiation and number of treatments. You then will receive your "markings". These are actual markings on your skin that stays on throughout your treatments. The are the guides needed for the radiation technician to get you properly placed so that the correct area is radiated. You will lay on the treatment stretcher...laser beams are used to line up with your markings. You will not feel anything as you receive your treatment. It will last usually approximately ten to fifteen minutes. The treatments are scheduled Monday-Friday for the number of weeks the Radiation Oncologist prescribed.
It is very important to apply Aquaphor, an emollient cream, to the skin that was radiated. Over time radiation could burn and cause blisters on the skin if not protected. You apply Aquaphor after each treatment and removing before the next. I received thirty treatments for my breast cancer. Once completed, my skin looked tanned and peeled like a sunburn.
When you’re going through all the unpleasantries, it will fe Mosy of hel like it will never end…but it does. Once you get through it all, you will look in retrospect and realize it was just a short period of time. You have made it to the other side!
Managing side effects…and still having a life.
Your treatment is done in cycles, meaning the time you receive your chemotherapy through to the next time you receive your treatment, is called a cycle. Cycles can vary, it's based on the drugs that are being used. Treatments are very structured in the way they are given. Perhaps you take treatments for two weeks and then off for two, or your treatments are every three weeks. Just as predictable as the routine of the treatments, so will be the side effects that you will experience, and will be the same each subsequent cycle. You manage by treating the symptoms. Your Oncologist will make sure you have what you need for nausea, pain, etc.
Each cycle consists of treatment time and recovery time. Just as regimented as the treatment, so are the side effects. If you start having nausea on day three following your treatment, you will have nausea begin on day three of the remaining treatments. You experience the same things, on the same days each cycle. Many worry about what's going to happen the next cycle, that it is totally unpredictable each cycle. I assure you that it is the same each time. It is because of that consistency of side effects that allows you to continue with your life as normal as possible.
Pay attention during your first cycle to what symptoms you have on what day and how long they last. For instance, if you know that you start feeling queasy on day three, when you wake up on day three each cycle, you will start taking your Zofran the doctor has prescribed, just as prescribed, for the days you experience nausea, You will be able to keep ahead of the game and keep the side effects to a minimum.
Whatever the symptom, there is something that can help to keep you as comfortable as possible. Be sure to report all symptoms to your doctor so they can help you manage those symptoms.
Another symptom is fatigue. This is experienced by everyone at varied degrees. Know your limits. Remember, wherever you go, you have to get back. The first time I realize this I was at one end of the mall, and my car was at the other! I thought I’d never make it back. This too, can be managed by planning ahead for the task at hand. Learn to pace yourself and rest when necessary. One thing I found interesting is it was chemo you feel the overall fatigue, but if you take radiation treatments, they make you sleepy. You’ll have to take a nap every day after treatment. You may not be able to work while receiving radiation.
Your Employer…
You may or may not be able to work while you undergo your treatment. It will depend on the type of work you do, your health going into the treatments, and the type of treatment you receive. The different chemotherapy drugs can cause different side effects, and their severity. I was able to work the full six months the first time I went through treatment, but couldn’t the second.
Hopefully you will have and understanding and supportive boss should you need to take time off. The American with Disabilities Act protects you from employers and any action taken against you for taking the needed time off for your treatment.
Furthermore, employers are required to accommodate you when you work, i,e,; longer breaks to rest, light duty, et,c, You need to understand that your employer can not fire you. because of your diagnosis and needed treatments.
Relationships…
Cancer treatments, and their side effects can affect relationships, intimacy, and reproduction. Many couples turn together, and their relationships become stronger. Many breast cancer patients feel disfigured, and have expressed the lack of intimacy from their partner. Couple that with their own self esteem issues, and insecurities, that can wreak havoc in their relationships. On the other hand, many find their partners very excepting and supportive. Regardless of the type of cancer that you have, it is important to keep intimacy alive in your relationship. Yes, you are tired. Maybe you feel unattractive without your hair. The fact is that intimacy has a positive effect on your recovery. It has been proven that love, sex, cuddling, and the like stimulates chemicals in our bodies to help us feel better. It is true that a hug can be good medicine.
Spiritual Well-being…
One source of comfort for many is prayer. Your spiritual life may be tested. You will wonder why did God allow this to happen to you. Many people turn to God during this time...have faith. God will be there for you. Even if you aren’t a believer, there will be others praying for you. God hears those prayers as well.
Some of you will have feelings of grief from the loss of your appearance, loss of a breast, loss of the ability to maintain an active lifestyle, loss of a job and so forth. That's pretty common actually and many seek out counseling during this time. I went through counseling with my second cancer experience. I found it to be very helpful. Your cancer center may have someone available to you, or ask your doctor.
Wigs, breast forms, garments, etc
WIGS...
The main thing on most everyone’s mind is hair loss. It will affect most people. The distress of hair loss is not just limited to us women, men also get upset about it. You will need to prepare yourself for this. Even if your wig looks exactly like your hair, it won’t look right to you. At first, you will be self-conscious, and think everyone is looking at you… They aren’t. Your family and friends will see you bald and it will not bother them. They get used to your new look.
You need to get your wig as you’re starting your treatment so you can get adjusted to your new look. You’ll be more comfortable wearing a wig out in public when it’s necessary how do you pick out a wig? First, check at your local American Cancer Society. They have new wigs that have been donated that you could get for free. If you choose to buy one, you should look for quality brands, such as Raquel, Welch, Eva Gabor, etc. Many of those wigs are priced in the $120 Dash $175 range. There are wigs that cost more but there are plenty of styles to fit your budget . The wigs will be synthetic and I highly recommend that over human hair wigs. . The wigs will be synthetic and I highly recommend that over human hair wigs.
synthetic wigs are easy to care for. You washed them in a cat full of all light and cool water. You don’t need to buy special wig shampoo… Save your money for something else. Once you rinse your wig in cold water, just take a towel and squeeze the water out. Shake it out and hang it upside down to dry, it will look like a drowned rat, but don’t worry, just shake it out and it’s as good as new. The style remains. It would wash it every 2 to 3 weeks, more often if sweaty, it will just depend on your lifestyle. Some wigs have special fibers that allows you to use a curling iron or flat iron on them to stall if you wish , make sure your wig is clearly marked as one that can withstand heat before applying any heat to it. Otherwise you will ruin your wig.
Another thing to consider is the Cab construction of the wig. They are lightweight and vented to keep your cool. It’s a front hairline you can get wigs with a soft felt fabric or with a lace front. The lace front allows you to wear your hairbrush back from your face without noticing it is a wig. it is a good idea if that’s the way you normally wear your hair.
You don’t need to buy something special to put your wig on when you’re not wearing it. Hang it from a door knob or bed post, etc. allowing it to hang upside down when you like when you wash it the crown is the first place that will break down. To keep it in good shape don’t just take it off and lay it down the way it folds when you lay it down like that speeds up the breakdown of the cap construction.
You will feel self-conscious. Trust me, with the wigs out today, no one, even someone standing behind you at the checkout line, or even notice.
Whatever you feel about it, it is OK. For those of you that want to get a wig, let me give you some helpful tips. Your hair loss generally starts after the second cycle of your chemotherapy.
Your insurance will cover the cost of your wig. However you will most likely have to pay upfront. You would then send your receiot in to your insurance company for reimbursement.
BREAST FORMS...
These are made of silicone and are used to replace yoiur breast following a mastectomy. This is an option for you if you choose not have breast reconstruction, a surgical procedure,
Another term is breast prosthesis. This is cover by insurance. Specialty garments include bras, camiosles, swimsuits, etc, all having a special built in pocket to hold the breast form in place. You need to see a specialist to be fitted for your prosthesis. These are covered by insurance as well.
Survivorship
You did it! Undoubtedly you will be a different person once you finish your treatments. You will see life through different eyes. You will cherish even the smallest things, and every moment is not to be missed. Do things you've always wanted to do...take the trip, take the class, whatever it is...DO IT!
You will find that you run on a different clock than those who have not gone through what you have. Don't put things off...live your life to the fullest!