1. Get specifics on your diagnosis and treatment. - Bring your questions with you in writing to your appointments. Ask for copies of your test results. Keep a notebook of all these results. Keep a list of questions that arise between visits so you don’t forget, and take notes of the answers.
2. Spend time choosing your doctor. - I went and got second opinions. I would have went with a third if the two physician's opinions did not match. Both doctors recommended the same treatment. I ended up choosing my surgeons and oncologist based on my "gut instinct" and how they made me feel as a patient.
3. Get the support you need for talking about your diagnosis. You may feel concerned about upsetting your family and friends or worried about how they will react. Even after you have shared the news, at times you may find it difficult to communicate openly. Sometimes it is helpful to find another group of survivors to talk to. I found a great community at www.youngsurvival.org . I also talk with a Mentor Angel from an organization: Immerman Angels, which I have found very helpful.
4. Seek help in navigating financial issues. I am a social worker, so I used my skills to find multiple financial organizations and donations to help me through my journey. Every hospital has a social worker on staff, but I always find it is best to get the job done ourself. As a young woman with breast cancer there are many organizations that are willing to donate wigs, money, etc. to help our cause. Email me: ckennedy1984@gmail.com If you want ANY help with this.
5. Treatment and work. I told work about my diagnosis & I knew that being in a high-stress field in a hospital, that I would not be able to work through most of my treatment. Some people are able to work throughout their cancer treatment. You may want to talk with your employer about options such as flextime, job sharing or working from home. I have found it most helpful to keep my employer informed about my treatment and my expectations to return to work.
Mastectomy Tips:
I had a bilateral mastectomy with immediate tissue expanders. There are many various types of reconstruction and surgery for breast cancer. I can only give advice based on my type of treatment and experience.
~ Laxatives are must if on pain narcotics
~ Have a note pad by pain meds, write down time you take pain meds, that way you won't over or under dose.
~ Be sure to take pain meds. studies have proven that a patient who has less pain recovers better. Don't try to be a hero and not take them.
~ Get copies of your pathology report and any other tests, etc
~ Get some yoga pants or comfy sweat pants & zip up hoodies went a long way.
~ Drink plenty of fluids
~ Get two post-surgical bras or camisoles - one to wear and one to put in the wash Mastectomy Bra
~ You can't shower with the drains - Get baby wipes and wet facial cloths...you will need to take a "semi" shower
~ If you have drains get a pad to record the date, time of day and amount emptied
~ Get an electric razor, you will never be able to shave your underarms with a regular razor again if you had your lymph nodes removed. It helps to get a close shave by adding baby powder to the shaved region first
~ It's so important to do exercises after surgery to get your range of motion back. I did my OT/PT exercises 3x daily for two weeks, my ROM came back within 3 weeks.
~ Have a note pad by pain meds, write down time you take pain meds, that way you won't over or under dose.
~ Be sure to take pain meds. studies have proven that a patient who has less pain recovers better. Don't try to be a hero and not take them.
~ Get copies of your pathology report and any other tests, etc
~ Get some yoga pants or comfy sweat pants & zip up hoodies went a long way.
~ Drink plenty of fluids
~ Get two post-surgical bras or camisoles - one to wear and one to put in the wash Mastectomy Bra
~ You can't shower with the drains - Get baby wipes and wet facial cloths...you will need to take a "semi" shower
~ If you have drains get a pad to record the date, time of day and amount emptied
~ Get an electric razor, you will never be able to shave your underarms with a regular razor again if you had your lymph nodes removed. It helps to get a close shave by adding baby powder to the shaved region first
~ It's so important to do exercises after surgery to get your range of motion back. I did my OT/PT exercises 3x daily for two weeks, my ROM came back within 3 weeks.
~ Walk, walk walk! I walked daily, even if it was slower than a snail. I feel the blood flow helped speed up my healing process and helped increase my ROM.
Chemotherapy Tips:
1. Get good nutrition. Epirubicin/Cytoxan messed with my ability to taste and smell, and it altered your digestion. For the week after my chemo treatment, foods that I normally enjoyed may not taste good during treatment. Protein and iron rich foods may help boost RBC. I generally liked eggs, milk, and cheese as my sources of protein during times of nausea. On my good weeks, nuts, organic chicken, grass fed beef, eggs, dairy, etc were all included in my snacks & meals to prep for my next treatment. Crackers help. Clear sodas, gatorade, water, and plain juices (drink whatever appeals to you) - make sure you get 2-3 L of fluid a day. Ice Cream, Smoothies, and Ice Pops are great ways to get food into you when you have mouth sores or an achy stomach. I also took Children's Flinstone Vitamins through treatment, low dose of vitamins are preferred during chemotherapy.
2. Items to purchase before chemotherapy. a. Purell-type hand-sanitizer to put in your purse, on your desk at work & in your car. b. Aleve or Ibuprofen to help with the bone pain. c. Biotene mouthwash & Sensitive toothpaste which has 0 alcohol to increase risk for mouth sores. d. Anti-constipation Treatment: Colace, Miralax, Senekot-S, Smooth Move Tea (see what works for you). e. Acid Reflux Medication - Pepcid or Zantac. Ginger Tea or Ginger Candies. f. Moisturizers and Cleansers for sensitive skin - Aveeno Anti-Itch products were great or anything meant for babies. g. Thermometer (since tracking temp matters) h. Many boxes of kleenex (0 nose hairs = dripping nose) i. a box/packet of the flushable moist wipes (prevents UTIs and sometimes it hurts to go to the bathroom) j. 2 Jars of Clorox-type wipes to clean desk at work and gym equipment.
3. Get exercise. Gentle exercise during treatment, such as regular walks, can help with both the mental and physical effects of treatment. Getting your circulation going may also help with chemobrain, the mental fogginess noticed by some patients during and after chemotherapy, and it can certainly improve your mood and your outlook on life. I try to get at least 30min of exercise in daily. I will usually exercise lightly for 30min on my "bad" days and for 2 hours on my good days (keep in mind I am an athlete, so my physical activity generally ranges on the high end). I will run/walk or hike or cycle on my good days. It gives me a sense of normalcy and control over what is going on inside my body.
4. For Those Facing Hair Loss. www.4women.com ; www.headcovers.com ; www.wigs.com . I had my long hair cut short a month before chemo, so I could adjust to the hair loss. I did not lose my hair until after my second EC treatment. I had my mother buzz and shave my head. It is best to get a lint roller to help "collect" the falling stubble. It sounds gross, but its better than getting it all over your clothes. I got many wigs, sometimes it helps to get more than one, but really this "head-cover" stuff is about personal preference. I love the wigs & scarves. I am not much for the hats at all.
5. Pointers on tying scarves: http://www.coveryourhair.com/HowToTieTiechels.html OR You Tube: search "how to tie head wraps." The video is by galaxyswurl.
17. Low Iron & Potassium. My iron counts dropped before treatment a lot ... I am always cold (sign of lower iron I heard). Iron is absorbed best with Vitamin C. I have incorporated one serving of grass fed beef into my diet the week of chemo & it has helped. I usually never eat red meat. Also my salad base is always spinach. Beans, beans, beans! Aim to have at least one or two from the list each day. I also take a kids multivitamin daily. Its 1/2 of what we are daily recommended but it still helps me get through treatment a bit.
~Top foods for Iron: Beef, Clams, Oysters, Black beans, Kidney beans, Lentils, Lima beans, Navy beans, Oatmeal, Pinto beans, Soybeans (Edamame), Spinach, Tofu
~Top Foods for Vitamin C: Guava, Red sweet pepper, Kiwi fruit, Orange, Orange juice, Green pepper, Grapefruit juice, Grapefruits, Strawberries, Brussels sprouts, Cantaloupe, Papaya, Broccoli, Sweet potato, Tomato juice, Cauliflower, Pineapple, Kale, Mango
~Top Foods with Potassium: Sweet potato, Tomato paste, Beet greens, Potato, baked, White beans, Yogurt, plain, non-fat, Tomato puree, Tomatoes, Clams, Carrots, Carrot juice, Halibut, Soybeans, Tuna, Lima beans, Winter squash, Cod, Pacific, Bananas, Spinach, Tomato juice, Tomato sauce, Peaches, Milk, non-fat, Apricots, Cantaloupe, Honeydew melon, Lentils, Plantains, Kidney beans, Orange juice, Oranges
18. Stomach Issues:
I had reconstruction with Silicone implants. I did not have drains put in, although some people do. I was lucky to not have to go through the drain experience again. I would definitely give similar advice for the mastectomy tips, that I will give for the reconstruction tips, as the procedure was similar in some aspects. Also, you most likely will have to go back for a revision surgery 6-9 months later. That is okay, its easy and NOTHING like your mastectomy.
~ Laxatives are must if on pain narcotics, so Milk of Magnesia is a good one to use post anesthesia. I had bad reactions to Tramadol, so two days post surgery I was able to use Tylenol extra strength instead of the narcotic pain medication.
~ Get some yoga pants or comfy sweat pants & zip up hoodies went a long way the first few days after surgery.
~ Drink plenty of fluids, eat fruits & veggies & take your vitamins. You want to push in healthy nutrients to speed up healing.
~ Get two post-surgical bras or camisoles (ones to hold drains and/or hold in ABD pads )- one to wear and one to put in the wash Post-Surgical Bra
~ You can't shower 48 hours after surgery if you did not get drains- Get baby wipes and wet facial cloths...you will need to take a "semi" shower
~ Walk, walk walk! I walked daily, even if it was slower than a snail. I feel the blood flow helped speed up my healing process and helped increase my ROM.
~ You also need a surgical bra, most doctors will give you one & you have to wear this 24/7 for 6 weeks post surgery. I'd advise getting more than one, so one can be put in the wash. Good Bras :
1. Underarmour Zip Front Sports Bra
2. Underscore Zip Front Sports Bra (JCPenneys)
3. Marena Breast Lift Bra
4. Marena Tube Top Bra
5. Antia Care Compression Bra
RADIATION SKIN CARE
1. Pure Aloe + Prutect (prescription lotion)- AM/After shower
2. Prescription Lotion (Prutect) - right after radiation.
3. Aquaphor or prescription lotion - After home from radiation
4. Aloe + Aquaphor- bedtime/after shower
~ Avoid the sun - No tanning & wear sunblock when outside or you risk increasing damage to your skin
~ Take a good multi-vitamin (one without vitamin e)
~ Stay Hydrated
~ Try to get active 30min a day
~ Get a lot of rest, radiation fatigue is cumulative. Each week gets worse and by Friday, I was ready to take a nap ASAP.
5. Pointers on tying scarves: http://www.coveryourhair.com/HowToTieTiechels.html OR You Tube: search "how to tie head wraps." The video is by galaxyswurl.
6. Bring a "Chemo Bag". a. I come with all sources of entertainment - magazines, crosswords, coloring books, DVDs, iPod, Lap Top. Chemo can be long & the IV steroids get me hyper, so I need many sources of entertainment. b. Water & Gatorade. c. Plain Snacks. d. Snuggie, Blanket or Hoodie
7. Assemble a small make-up type bag with "supplies". You can move from purse to backpack back to purse to car or whatever that includes some of the stuff that's good to have on hand when you're out and about: Tylenol or Ibuprofen (ask your oncologist), Wisps, Floss, Breathsaver-type lozenges, chapstick, baby wipes, unscented hand lotion, eye drops, antibiotic ointment, Band-Aids, extra doses of your medications, Purell sanitizer or hand wipes, Saltines or granola bars & Kleenex.
8. Hydration - Drink a lot of fluid, preferably water. And when I say "a lot" I mean "a normal lot" not so much that you get sick from drinking too much water! ( I accidentally drank 2 gallons of water during my second EC, the results were gross). You want to be well-hydrated, but not too hydrated.
9. Nails! - Keep your nails short and filed throughout treatment. Also invest in a cuticle cream and tea tree oil. Apply both to your nails in the AM & PM. Also add three drops of tea tree oil to Sally Hansen Miracle Cure base coat to prevent peeling & yellowing of nails during AC/EC. If you are on Taxol, paint your nails with the same steps above and then always keep your nails in a dark shade to prevent damage. OPI makes strong, long lasting dark polishes. If you get a manicure or pedicure, bring your own manicure set. Try not to hit your nails on anything. I lost toenails due to my toes constantly hitting my sneakers during long runs. I managed to only lose one and saved the rest by having great nail hygiene. Keeping my nails short and dousing my toes with Tea Tree Oi, Almond Oil, and Cuticle Creams seemed to do the trick and saved at least 3 other toenails.
8. Hydration - Drink a lot of fluid, preferably water. And when I say "a lot" I mean "a normal lot" not so much that you get sick from drinking too much water! ( I accidentally drank 2 gallons of water during my second EC, the results were gross). You want to be well-hydrated, but not too hydrated.
9. Nails! - Keep your nails short and filed throughout treatment. Also invest in a cuticle cream and tea tree oil. Apply both to your nails in the AM & PM. Also add three drops of tea tree oil to Sally Hansen Miracle Cure base coat to prevent peeling & yellowing of nails during AC/EC. If you are on Taxol, paint your nails with the same steps above and then always keep your nails in a dark shade to prevent damage. OPI makes strong, long lasting dark polishes. If you get a manicure or pedicure, bring your own manicure set. Try not to hit your nails on anything. I lost toenails due to my toes constantly hitting my sneakers during long runs. I managed to only lose one and saved the rest by having great nail hygiene. Keeping my nails short and dousing my toes with Tea Tree Oi, Almond Oil, and Cuticle Creams seemed to do the trick and saved at least 3 other toenails.
10. Locating "Good veins". Yesterday I learned some handy-dandy pointers for making it easier to locate a "good" vein from which to draw blood or start an IV. AC/EC can be hard on the veins. I was given the opportunity to use my veins. The goal is to keep my veins in good enough health that I can use them for all 8 treatments. Another goal is to "start low" on the arm so that if one vein is blown, then they can work their way up. A nurse can go to a higher vein for attempt #2, but she cannot go lower. The standard advice is "Drink lots of water" because hydrated veins are easier to find and stick. Warm up your hands before they put in the IV, draw blood, etc. Run them under warm water.
11. Bone Pain/Aches. Tylenol is the first pain killer of choice for A/C as it has the fewest possible side-effects, but Tylenol does not work for me. I take Bayer or Aleve, with my doctors approval, 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after. I also was told to take the same medication throughout my Taxol treatments. Baby/Child medications are much safer to take daily, so find a low dose anti-inflammatory OTC. If that doesn't help, ask your doctor for a Rx that is much safer to take daily. Regular exercise (e.g., a walk) seems to help lessen or prevent Neulasta and Taxol pain.
11. Bone Pain/Aches. Tylenol is the first pain killer of choice for A/C as it has the fewest possible side-effects, but Tylenol does not work for me. I take Bayer or Aleve, with my doctors approval, 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after. I also was told to take the same medication throughout my Taxol treatments. Baby/Child medications are much safer to take daily, so find a low dose anti-inflammatory OTC. If that doesn't help, ask your doctor for a Rx that is much safer to take daily. Regular exercise (e.g., a walk) seems to help lessen or prevent Neulasta and Taxol pain.
12. Neuropathy - Taxol causes numbness in some people's fingers and toes. Avoid going barefoot. Wear slippers inside always. Gently massage feet and hands with lotion to keep them soft and improve circulation. Wash hands (and dishes) in lukewarm water, not hot. Ask onco about taking 50 mg of B6 or L-Glutamine to address neuropathy (tingling, numbness that often appears first in feet and hands). My neuropathy appeared as "nail pain." I would advise not hitting your nails on anything, because it will hurt!
13. Nausea - Do not eat directly after chemotherapy nor drink too much fluid. I took a cocktail of anti-nausea medication : Compazine was oral. Emend, Aloxi & Decradron IV during my treatment. I refused oral steroids. Ginger Tea & Ginger candies help with nausea. I am a big fan of ginger ale, picked ginger (sushi is served with it), Yogi Lemon Ginger Tea, & Gin Gins Ginger Candies.
14. Fatigue - During AC/EC, the day of treatment you will feel very tired. The next day not great but the third day is the hardest day. I had my treatment on Monday and Wednesday was the worst day. I could only eat toast, ice cream, and saltines. By Friday, I feel normal again. I will go on slow walks, use my recumbent bike, or do light yoga to help with the fatigue. During Taxol, I received weekly Taxol. The fatigue actually did not "hit" me until week 9/10 and usually it was worse on Day 2, the day directly after my infusion. It helped to get active that day & also rest when I needed it.
13. Nausea - Do not eat directly after chemotherapy nor drink too much fluid. I took a cocktail of anti-nausea medication : Compazine was oral. Emend, Aloxi & Decradron IV during my treatment. I refused oral steroids. Ginger Tea & Ginger candies help with nausea. I am a big fan of ginger ale, picked ginger (sushi is served with it), Yogi Lemon Ginger Tea, & Gin Gins Ginger Candies.
14. Fatigue - During AC/EC, the day of treatment you will feel very tired. The next day not great but the third day is the hardest day. I had my treatment on Monday and Wednesday was the worst day. I could only eat toast, ice cream, and saltines. By Friday, I feel normal again. I will go on slow walks, use my recumbent bike, or do light yoga to help with the fatigue. During Taxol, I received weekly Taxol. The fatigue actually did not "hit" me until week 9/10 and usually it was worse on Day 2, the day directly after my infusion. It helped to get active that day & also rest when I needed it.
15. Hair Re-growth - Advice from my Immerman Angel: After you finish chemo, to make your hair grow faster, take a vitamin called "Biotin" and use "Nixon" shampoo. I went the organic route and did a little research myself:
- A good Multi Vitamin with: Vitamin K 100IUs daily; Vitamin E 400IUs; Vitamin A 25,000 IUs; Vitamin C 100% daily value ; and Zinc 100% daily value
- Biotin : Word of Caution, Biotin in excess causes cell multiplication. It caused Acne in me in the past. Most Multi-Vitamins have a small bit of Biotin in it & I wouldn't over supplement the product IMO. I would also ask your oncologist about the supplement before you start it.
- L-Glutamine: It comes in powder or pill form. It is found in most protein powders. In the past, I found that Syntrax Nectar protein powders helped with hair health & also helped with exercise recovery. It is also found in all natural forms of protein, so eat up on your Beans, Poultry & Fish!
- Omega 3-Fatty Acids: Before chemotherapy I would take 1,200 mg Omega 3 daily. I would not start taking this until after Chemo & Surgery as it does thin your blood.
- Vitamin D3: 1,000IUs daily are recommended for hair health. I take this with my daily Calcium Supplement in the AM & also take an extra 1,000IUs of D3 at night.
- Hair Products I Used: Jason Organics Thin to Thick Revitalizing Scalp Elixir (daily before bed); Therma Scalp Natural Scalp Repair Spray (daily after my AM shower); Giovanni Wellness System Shampoo (daily on my scalp during each shower); Avalon Organics Biotin B-Complex Thickening Shampoo & Conditioner (daily before I lost my hair & plan on returning when it grows back)
17. Low Iron & Potassium. My iron counts dropped before treatment a lot ... I am always cold (sign of lower iron I heard). Iron is absorbed best with Vitamin C. I have incorporated one serving of grass fed beef into my diet the week of chemo & it has helped. I usually never eat red meat. Also my salad base is always spinach. Beans, beans, beans! Aim to have at least one or two from the list each day. I also take a kids multivitamin daily. Its 1/2 of what we are daily recommended but it still helps me get through treatment a bit.
~Top foods for Iron: Beef, Clams, Oysters, Black beans, Kidney beans, Lentils, Lima beans, Navy beans, Oatmeal, Pinto beans, Soybeans (Edamame), Spinach, Tofu
~Top Foods for Vitamin C: Guava, Red sweet pepper, Kiwi fruit, Orange, Orange juice, Green pepper, Grapefruit juice, Grapefruits, Strawberries, Brussels sprouts, Cantaloupe, Papaya, Broccoli, Sweet potato, Tomato juice, Cauliflower, Pineapple, Kale, Mango
~Top Foods with Potassium: Sweet potato, Tomato paste, Beet greens, Potato, baked, White beans, Yogurt, plain, non-fat, Tomato puree, Tomatoes, Clams, Carrots, Carrot juice, Halibut, Soybeans, Tuna, Lima beans, Winter squash, Cod, Pacific, Bananas, Spinach, Tomato juice, Tomato sauce, Peaches, Milk, non-fat, Apricots, Cantaloupe, Honeydew melon, Lentils, Plantains, Kidney beans, Orange juice, Oranges
18. Stomach Issues:
- A/C & E/C cause constipation. During the E/C process, the day before I took Colace or Senekot 2x daily and also one dose of Milk of Magnesia the night before my infusion. I also found that eating high fiber, plain foods helped keep me regular.
- Taxol caused just the opposite. I had issues with diarrhea, but it went away by Day 2 or 3. I used Imodium as a last resort at least 2x, but it otherwise resolved itself on its own. It also helped to stay hydrated as diarrhea causes dehydration.
- Taxol also caused nasty Acid Reflux. I couldn't really find a solution to the acid reflux other than avoiding coffee and citrus fruits. I still had Acid Reflux, but I was able to cope with the side effect and go on with my daily routine. There are OTC medicines for Acid Reflux & when all else failed: Ginger Ale and Saltines did the trick.
I had reconstruction with Silicone implants. I did not have drains put in, although some people do. I was lucky to not have to go through the drain experience again. I would definitely give similar advice for the mastectomy tips, that I will give for the reconstruction tips, as the procedure was similar in some aspects. Also, you most likely will have to go back for a revision surgery 6-9 months later. That is okay, its easy and NOTHING like your mastectomy.
~ Laxatives are must if on pain narcotics, so Milk of Magnesia is a good one to use post anesthesia. I had bad reactions to Tramadol, so two days post surgery I was able to use Tylenol extra strength instead of the narcotic pain medication.
~ Get some yoga pants or comfy sweat pants & zip up hoodies went a long way the first few days after surgery.
~ Drink plenty of fluids, eat fruits & veggies & take your vitamins. You want to push in healthy nutrients to speed up healing.
~ Get two post-surgical bras or camisoles (ones to hold drains and/or hold in ABD pads )- one to wear and one to put in the wash Post-Surgical Bra
~ You can't shower 48 hours after surgery if you did not get drains- Get baby wipes and wet facial cloths...you will need to take a "semi" shower
~ Walk, walk walk! I walked daily, even if it was slower than a snail. I feel the blood flow helped speed up my healing process and helped increase my ROM.
~ You also need a surgical bra, most doctors will give you one & you have to wear this 24/7 for 6 weeks post surgery. I'd advise getting more than one, so one can be put in the wash. Good Bras :
1. Underarmour Zip Front Sports Bra
2. Underscore Zip Front Sports Bra (JCPenneys)
3. Marena Breast Lift Bra
4. Marena Tube Top Bra
5. Antia Care Compression Bra
Radiation Tips:
RADIATION SKIN CARE
1. Pure Aloe + Prutect (prescription lotion)- AM/After shower
2. Prescription Lotion (Prutect) - right after radiation.
3. Aquaphor or prescription lotion - After home from radiation
4. Aloe + Aquaphor- bedtime/after shower
~ Avoid the sun - No tanning & wear sunblock when outside or you risk increasing damage to your skin
~ Take a good multi-vitamin (one without vitamin e)
~ Stay Hydrated
~ Try to get active 30min a day
~ Get a lot of rest, radiation fatigue is cumulative. Each week gets worse and by Friday, I was ready to take a nap ASAP.
