The End of Paclitaxel (Taxol) for Breast Cancer by Diann

Denise, Diann's son, Tyler, and Diann

Denise, Diann’s son, Tyler, and Diann

Special thank you to my sister, Diann, for writing this Blog Post to share her experiences with Taxol during her 5 months of chemotherapy for Stage 3 Breast Cancer.  She had her last Taxol on October 20, 2015     Denise

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First, I would like to thank all the women out there who have written Denise, my sister, about my breast cancer diagnosis and sent your prayers and support. It means so much to me! This road is only understood by someone who has walked the same road!  I told Denise I thought I understood breast cancer treatment because I watched her go through treatment.  Going through it myself, I realize I had LESS THAN a 5% understanding of what extreme suffering a breast cancer patient goes through!

When my sister first asked me to write a blog post about my experiences with Taxol, I was a little hesitant as I had never written a blog post.  But, I will give it a shot.  These are my experiences with Taxol (Paclitaxel)- I had the 12 weekly dose version as my Oncologist said they have find there are less side effects by spreading it out.

I have found all of chemotherapy to be very trying. Adriamycin Cytoxan chemo did not treat me well. I felt like giving up. . Everyone told me Taxol would be better, and while it is better, it is not as good as I had thought it would be in my head! And because of that, I struggled with acceptance of the road I’m on.

I get chemo on Tuesdays. The thought of going and preparing for chemo is always worse than getting the actual infusion. After the infusion, I feel quite good and can go out to eat on the way home. I don’t sleep well on Tuesday nights though—I feel like I’ve had 12 cups of coffee! I’m told it’s  the steroids.  I am on an extremely low dose of steroids, the chemo nurses told me, however.  So I am grateful for that aspect!

Wednesdays I still feel pretty good, though fatigue hits after work. On Thursdays, I wake up fatigued, but I do go to work and manage about 5-6 hours. After struggling to get home, I’m in the recliner with my feet up. It seems like I live in that recliner.  Fridays and Saturdays are the same – living life from the recliner!

I watched Downton Abby, the award-winning PBS series to pass some of the time in the chair. So I pulled it up on Amazon Prime, and I watched all five seasons (like 50 episodes) in two weeks!  That tells you how much sitting I do!

I did have one Tuesday when I got the flu (vomiting, diarrhea, and a low grade fever). I was seeing the doctor that day for my infusion so I went, not knowing if the side effects I was having was the flu or just a side effect of chemo. They sent me to their cancer urgent care area and gave me 2 hours of fluids and meds to stop the diarrhea. No chemo that day! And the result was after the flu passed in a couple of days, I felt better than I had in months. This was a welcome break for me.

Here are the side effects I experienced during Taxol:

Heartburn often very severe

Extreme fatigue

Significant Coughing and mucous

Bloating

Some nausea and gagging

Chemo rash on my face

Constipation and diarrhea

Then even MORE Fatigue

High heart rate (110+)

Elevated liver enzymes

My blood counts stayed really good throughout Taxol, so said my chemo nurses.  I tried not to pay too much attention to them as it would make me feel worse!  Everyone is different in this area!

My Food Cravings:

During AC – hot dogs and onion soup (salt I guess)

During Taxol – Tomatoes, watermelon, more onion soup

I’m trying to drink 68 oz of water a day (especially the 3 days following chemo) and taking a regular Claritin daily. I’m hoping the water will flush out the chemo (I hate smelling it in my urine!) and the Claritin stops the cough I developed.

I do ice my hands and feet during chemo. I did this one for my sister! I didn’t want to do it because I would have rather reclined in the chemo chair and relaxed during the chemo infusion.  Denise finally convinced me it would definitely help me from losing fingernails and toenails, and maybe even help or stop neuropathy which is a common side effect of Taxol.  As of my last infusion,  I still have finger and toe nails with occasional numbness in my hands and feet which comes and goes.  My Physician’s Assistant said it is okay if the neuropathy comes and goes, but to let her know immediately if it stays.  So far, I am happy to report, it has not stayed.

Let me say I’m very happy to be closing the door on Taxol.  Wiith God’s grace, I won’t be back.

My next step is Radiation.  I will let you know my experiences with Radiation.

25 things to do for a Cancer Patient

I’m always being asked, “what should I do for a cancer patient??  My answer is always the same:  “It doesn’t matter what you do, but please do something!”  Every kindness is never forgotten.  Many friendships are lost because cancer patients are ignored during treatment.  Being 3.5 years out from Chemotherapy, I have never forgotten one kindness extended to me.  Watching my sister go through Chemotherapy, it becomes even more real. And I learn from my sister that many cancer patients are stubborn!  When I ask my sister, “What can I do to help you?”  her usual response is, “Nothing, I’m trying to act normal.”  Knowing firsthand, there is no normal during chemotherapy, I ask her:  “How is that working for you?”  Finally, I get truth from her when she answers, “Not very well.”

If a friend or loved one is going through chemotherapy, trust me, they can use some help and lots of it!  Here is my Top 25 list of ways to help:

1)  Offer to take them to Chemotherapy and give them dates that you are available to do so.

2)  Drop off muffins at their front door — most cancer patients can manage to eat a muffin.  Lower fat content is best.

3)  Money is always an issue with 98% of cancer patients.  Cancer is so expensive no matter what insurance they may have.    A grocery store or drug store gift card, no matter what the denomination, would be extremely helpful.

4)  Send greeting cards and send more than one.  One of my dear friends sent me a card every week for one year!!

5)  Flowers are always welcome but ask the florist to send the least fragrant kind.  Some cancer patients are not able to be around fresh flowers, so if in doubt, ask a family member before sending.

6)  Mow their grass.

7)  Drop a small gift at their front door.  Often the cancer patient is just not up for visitors.  But a small gift will bring much hope.  I found many a gift just sitting at my front door!  What joy it brought me!

8)  Offer to weed their garden or water their flowers during warmer months.  My cousin and her husband came and planted my outside flowers when I was too sick to do so.  Their kindness still brings tears to my eyes.

9)  Offer to pick up groceries for them.  Going to the grocery store is one of the most challenging things during chemotherapy.  A dear friend of mine called me every week to see if I needed anything.

10)  If they have children, offer to watch the kids, offer to take the kids to school, or pick them up for school events.  This is so helpful for moms going through chemotherapy especially on their worst days.  Moms going through chemo are the women I most admire!

11)  Drop off soup or a casserole for the family — if you are dropping off food for the patient, be sure to ask what they are able to eat.

12)  Send them a cute chemotherapy hat as a gift.  This will lift their spirits.  Check them out at my online store FBlogoI will include a gift note card and special gift wrapping at no additional charge.

13)  Pedicures and manicures are not allowed during chemotherapy because of the risk of infection.  If it is a close female friend, offer to paint her toenails or fingernails.

14)  Offer to clean their house for 2 hours.  Set a time limit because staying too long will exhaust the patient.   Cleaning is on the bottom of the list of things cancer patients are able to do.  Offering to sweep for them, dust for them, or change their bed clothes would be much appreciated!!

15) Do their laundry.

16)  If they have a cat, change their cat litter for them.  Chemotherapy patients are not supposed to change cat litter because of germs!  This is something I do for my sister on a regular basis which she greatly appreciates and so does her cat!

17) Many agencies offer services or food or money to cancer patients, but the cancer patient does not have the energy to pursue this.  Do it for them, but be sure to ask their permission!!

18)  Send a card to their spouse or significant other to show they are not alone. The cancer patient will so much appreciate your support of their caregiver.

19)  If the cancer patient needs constant care, offer to sit with the cancer patient to give the caregiver a break.

20)  Offer to fill their gas tank or wash their car!

21)  Tie balloons at their front door to cheer them up!  I will never forget my aunt tied a “Congratulations” balloon at my front door on my last day of chemo!  It still brings me joy to think of it!

22)  Send them a list of things you are able to do for them with your telephone number – let them know you are really serious about helping them.

23)  Ask them if you can research something for them – often older patients who don’t access the internet, don’t know things that will help them feel better during chemo.

24)  Take out their garbage, especially if they live alone.  I finally got my sister to admit this was extremely hard for her to have the energy to dump her wastebaskets and haul her garbage can and recyclable bin to the street for garbage pickup.

25)  Ask if they are up for a 30 minute visit.  Do not stay too long.  It is very tiring for the cancer patient, but a short visit helps lift the spirits!

Molecular Breast Imaging (MBI) Quadruples Detection of Breast Cancer in Women with Dense Breast Tissue

Molecular Breast Imaging (MBI) could save your life if you have dense breast tissue.  New studies were recently released that confirms that it is nearly four times as effective in detecting breast cancer in women with dense breast tissue:    http://www.sciencedaily.com/releases/2015/01/150123101604.htm   NewTechnologySign I did not know this technology existed until about two months ago, even though it has been around for several years.  Not many hospitals have this technology.

On my Facebook page, I posted that Susan G. Komen of NW Ohio had grant money available in my area for uninsured or underinsured women for mammograms.  A friend saw the post.  Her husband lost his job, and they have been without health insurance for quite some time.  She had not had a mammogram in two years which greatly concerned her and found she was eligible for the mammogram.  At the small hospital where she had the mammogram, she was told she had extremely dense breast tissue. so they wanted her to go to a much larger hospital (Promedica Toledo Hospital) for Molecular Breast Imaging (MBI) which would also be funded by Susan G. Komen of NW Ohio.

My friend went for the test not knowing what to expect other than she was told dye would be injected into her bloodstream and mammograms would be taken with the dye present in her system.   Here is a good explanation of what occurs:    https://www.karmanos.org/?id=517&sid=1

My friend said the test consisted of four images and each one lasted seven minutes.  She said the hospital staff did many things to make her as comfortable as possible.  She indicated that you sit for the test (some technology has you lying down), they had a television and reading material while the test was being administered to help distract you.   The Radiologist told my friend that the previous mammograms she had since age 35 were virtually useless in her case because her breast tissue was so dense.   The Radiologist saw “a small spot” on the MBI and immediately gave her an ultrasound.  She finally got the “all clear” and the Radiologist told her after the test was completed, that she would need Molecular Breast Imaging (MBI) technology every year for breast cancer detection purposes.  My friend is so grateful that her care was not “short changed” because she was on a Komen grant.

In this video, Dr. Christine Granfield, a Radiologist, gives her view on Molecular Breast Imaging: https://www.youtube.com/watch?v=q-1KIevhwao

So women with dense breast tissue, please take note of this test and pass the word to others!!  I’ve received so many emails from women with dense breast tissue that were not diagnosed until Stage 3 or Stage 4 because their tumors went undetected.  If you have ever been told you have breast dense tissue, I urge you to talk with your doctor and see if this technology is available near you.

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NEW HATS AND SCARVES ARRIVING DAILY at http://www.hellocourage.com    Please check them out!  CH-h4activitydenimred1CH-h4reversibleblackwhite2SC-hijabbrownorange1SC-orangefloral1 CH-h4STpastel1SC-DDbreastcancerinfinity

The Financial Burdens of Cancer – Part 1

If you were recently diagnosed with cancer, the feelings are absolutely overwhelming.  The ongoing thoughts that go through your mind after whether you will live or die, are finances.  Will I lose my job, will my insurance cover my medical expenses, who will take care of my family, will I have to file bankruptcy, will I have to go on welfare, will I lose my house, my car, will I ever be able to work again and the playlist continues over and over in your head.  It is beyond terrifying.

financial_burden_need_moneyWhen I was diagnosed, I felt all of those feelings as I was single and self-employed without any sick time or short and/or long term disability benefits.  Looking back with the old, “If I knew then what I know now”, I give this wisdom and advice:

1)  INSURANCE:  Most of us have absolutely no idea of what insurance coverage we have for a catastrophic illness like cancer.  Who knows if your insurance will cover all chemotherapy drugs (some are $20,000 or more per infusion!), blood transfusions, port placement, for example, the drug Herceptin for one year ($60,000), or a compression sleeve?  Most of us never even heard  these words before diagnosis.   Ask your hospital to check with your insurance company to make sure they are “in network” before you start treatment.

I made the decision to go out-of-town to the University of Michigan Cancer Center because I felt my life depended upon it.  When I called my insurance company, they said University of Michigan was out of network, and I would have to pay 40% of my medical bills, which would have resulted in over $100,000 or more of additional medical expenses. YIKES!  I called the insurance office at the University of Michigan Cancer Center for their help.  Within days, with their help in convincing my insurance company I needed their care, my insurance company agreed to pay my medical bills 100% except for deductibles and considered that hospital “in network”.  LET SOMEONE ELSE FIGHT THIS BATTLE.  If you go to a large hospital, they have staff that deal with the insurance companies so you don’t have to do so!

Also, because I did not have prescription drug coverage, the Neulasta shot was not covered.  Neulasta helps increase your blood counts after chemotherapy and costs on average $4,000 to $9,000 PER SHOT!!  A cancer patient may need as few as 4 or many, many more shots!   However, my hospital said if they administered the shot the next day with me as an out-patient, it would be covered.  It entailed my driving another 120 miles round trip on the day after treatment, but it saved me $36,000 for the four shots I needed!!

There are also very expensive anti-nausea meds, Emend, which costs $100.00 per pill.  If you do not have prescription drug coverage, the hospital can give it to you intravenously which has a much longer effect, and then most insurances will cover it.

There is a program for cancer patients who have high co-pays for drugs such as Neulasta or Neupegon – if you have high copays, check this out for help in paying those co-pays:  https://amgenfirststep.com/

2)  HELP: Ask your most detail-oriented and computer savvy friend to help you find what services are available to cancer patients in your area. Upon diagnosis, friends and family ask how they can help you.  PLEASE take them up on their offers as you need to practice this new and difficult skill of accepting help.    Many don’t qualify for state welfare benefits, but other help is available no matter how small.  It all helps!  For example, I just learned that in my city there is a new program for cancer patients and their families called Nightingale Harvest. The only requirement is that you are in active treatment.  You need a note from your Oncologist–then they provide food, cleaning supples and toiletries to the cancer patient and family throughout treatment free of charge.  What a marvelous charity!

While I was undergoing chemotherapy,  my hospital put me in touch with an organization that gave me $300.00 in gas cards based on miles driven to and from treatment.  Their only qualification – undergoing cancer treatment.  I will never forget their kindness.  It still brings tears to my eyes when I think about it.

Here is a compilation of numerous organizations that provide help to cancer patients:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

3)  BEYOND HELP – If you are in a situation such as you have no insurance coverage, have no savings, lost your job, or any other dire situation, let friends and family help by either setting up a fundraiser or an online fundraiser such as http://www.gofundme.com   or  www.youcaring.com   to raise money for you and your family.   Please don’t be too proud, as people do want to help you!

4)  CLEANING – Most cancer patients have very little energy and especially no energy to clean your house.  Cleaning for a Reason is a service in the USA and Canada providing cleaning services to cancer patients while in treatment. http://www.cleaningforareason.org/

5)  MEALS – The best thing friends and family can provide are meals with food a cancer patient can eat.  This varies from person to person.  This website offers a free calendar where friends and family can sign up to bring meals to the cancer patient, and then sends email reminders to the patient and the food preparer!   www.mylifeline.org

6)  PERSONAL CARE – Many organizations offer things such as massages, reflexology, relaxation, emotional health, and other classes for cancer patients and their families.  The hospital where I received radiation treatment, provided me with a weekly massage at no charge.  It was a great comfort to me.

7) FAMILY TIME – One amazing organization, Little Pink Houses of Hope, provide vacations to breast cancer patients and their families.  For more information, go to:   https://www.littlepink.org

8) AMERICAN CANCER SOCIETY –  http://www.cancer.org  The American Cancer Society will put you in touch with help.  They also offer a free program for female cancer patients…Look Good, Feel Better.   http://www.lookgoodfeelbetter.org    I attended and it helped so much!  They provided makeup and skills to help you cope during treatment, like how to draw in eyebrows.  I HIGHLY recommend attendance at this free class.

You will make it through and things will get better.  But in the meantime, ask for help and accept help to relieve some of the financial burdens of cancer.

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I offer chemo hats for every budget and keep my profit margin low to help others – please check them out at http://www.hellocourage.com     CH-h4flappergrayred1

Pinked for a Day – Komen style

Susan G. Komen Race for the Cure of NW Ohio was held September 27-28, 2014 in Toledo, and Findlay, Ohio.  As many of you know, I was chosen as the “In Celebration of” honoree for the Toledo race.  What a day it was!   The excitement was mounting as people begin descending upon Downtown Toledo.  Although we are a mid-size city, the Komen race draws more people here than Chicago!  Attendance was over 27,000 people!

The day began early at 6:45 am as I arrived at Fifth Third Field, our beautiful stadium, home of the Toledo Mud Hens.  My picture, in banner form, was up on the stadium fence for the Walk of Survivors!

Komen2014WalkofSurvivorsbillboard After mingling with family, friends, and strangers, and walking through the multitude of tents for an hour, I was called onto the field by Chrys Peterson, our local celebrity newsperson and a woman who gives tirelessly to the Breast Cancer community.  Chrys and I had some “live” conversation on WTOL, our local news channel and CBS affiliate.  Channel 11 broadcasts the entire morning of the Race!!  It was time for them to play the video Chrys and Channel 11 had done about my journey.  It is surreal to see yourself and your story unfold on the Megatron Screens at the stadium which was full of family, friends, survivors, and supporters!  http://www.toledonewsnow.com/clip/10585775/toledo-race-for-the-cure-in-celebration-of-denise-mccroskey#.VCmCpemr4BY.wordpress

Hundreds of Survivors clothed in their pink shirts then pour onto the field for a photo in the shape of a pink ribbon   This is the most touching moment for me every year.  Knowing that these women understand, reaches into your soul and brings more healing.  There are always many tears, hugs, and wonderful reunions.  Dawn Roberts,

Cloud formation at the Finish Line at Findlay Race!!!!

Cloud formation at the Finish Line at Findlay Race!!!!

who attended the Findlay Race just days after her first round of chemotherapy said: “I went there feeling like an outsider to a club and left the day feeling inspired!”  Check out the cloud formation in this picture of Dawn as she finished the race!!

The young woman next to me, bald with her Komen cap on, had recently had a double mastectomy and had her second A/C chemo treatment last week.  A wheelchair was waiting for her so she could make it through the day.  After the photo, the Survivors all sing the emotional song, “I Run for Life” as tears pour down most of our cheeks.  Then it was time for me to lead the parade of Survivors from the stadium to the start of the race.  As I got into that decorated golf cart, all I could keep thinking was “How the heck did I get here?”

Tears just come out of my eyes as onlookers cheered and more golf carts followed behind with women unable to walk the race, followed by the sea of pink survivors walking toward the start of the Race.  You see many tissues during this time.  All I kept thinking about was my first Komen Race in 2012 when I was barely able to walk after just finishing treatment.

Leading the Parade in my Decorated Golf Cart!

Leading the Parade in my Decorated Golf Cart!

An old friend from the church of my youth came running up beside the golf cart to tell me her early 40s daughter just had her first chemo last week because of a recent breast cancer diagnosis.  Sadness came upon me and the reality of breast cancer hit home once more.  More friends and family lined the parade route as I waved and gave the thumbs up sign to the cheering crowds.

The parade ended at the starting line where the large stage is present.  Once again, Chrys Peterson called me to the stage to speak on live television and in front of 27,000 people.  My niece, Danelle, and nephews, David and Tyler accompanied me  where they gave me a bouquet of two dozen pink roses!  After a lovely introduction, I attempted to say something inspirational to the tens of thousands gathered.  People told me it was.  I can’t really remember as it is a blur!   Komen2014onstage1A very touching and surprising moment happened when I was given a gorgeous  heart and ribbon necklace designed by a local jeweler, Harold Jaffe Jewelers.  Their lives were touched by breast cancer.  They were in tears as they presented me with the gift, as they lost their mother to this terrible disease.

Forty-two friends and family were part of Team Hello Courage.  And many others, including friends I have met through this Blog, made contributions in my team’s name and were with us in spirit!   My heart was overwhelmed with gratitude for these family and friends who had sacrificed money, time and much energy to be there, had gotten up at the crack of dawn, many with little kids.  Some drove many miles like my friend since Kindergarten, Sandy, who came from Detroit.   And since it was Sunday morning, my favorite sign along the Race path was in front of Trinity Episcopal Church which said:  “Pray with your feet!”  It always is such a spiritual day and the memories of this very particular race will continue to inspire me.  A special thank you to the best aunt any woman ever had, Marian Gladieux, and my wonderful and persistent friend, Anita Conley, for nominating me for this great honor!Komen2014HC2

The day after the Race, I suddenly remembered a dream I had shortly after my official diagnosis.  I ran to my computer and found this blog post just a few posts into my very new blog dated October 22, 2011.

“I  had a dream this morning that I owned a Chateau in France.  I got to the house and there were suspended ceiling tile in the living area.  All of them were cracked and kept cracking before my eyes.  I was shocked.  I wondered why I had purchased this house in a foreign country with a cracked and broken ceiling.  So I took a long stick and poked at the ceiling tile.  A whole group of tiles just fell to the ground.  I was terrified I owned this piece of trash.  What had I gotten myself into, I wondered in the dream?  But then I looked up.  Beyond the broken and cracked and ruined ceiling tiles, I had a glimpse, just a glimpse of this gorgeous ceiling.  More beautiful than I could imagine.   A hand-painted vaulted ceiling that was hidden by the hideous ceiling tile.   And then I awakened.”

Three long and grueling years later living through Mastectomy, chemo, radiation, heart attack, lymphedema, my mom’s breast cancer diagnosis, writing 171 blog entries, writing thousands and thousands of emails, and establishing a business at http://www.hellocourage.com for cancer patients, I suddenly realized my life now is what was beyond the cracked and ruined ceiling tile.  I am now living under the hand-painted, magnificent vaulted ceiling that was previously hidden.  Never would I have chosen this path to get to that spectacular ceiling.  But it was the hand dealt to me , and with God’s grace and help, I was able to get there.

Thank you, Susan G. Komen Race for the Cure for helping reveal the ceiling beyond the cracked and broken tiles. Your continued passion, determination, and raising awareness of breast cancer is amazing as we continue in the pursuit of a cure.  My local representatives for Komen are so dedicated and  passionate which shows in their incredibly hard work.

You can still donate through Team Hello Courage until October 31, 2014.   http://nwohio.info-komen.org/site/TR/RacefortheCure/TOL_NorthwestOhioAffiliate?team_id=304769&pg=team&fr_id=4263

My Mom Has Breast Cancer. . .and Why Elderly Women Need Mammograms

My 80 year old mom (who is more like a 50 year old energy wise) was diagnosed with Breast Cancer during last week.   It has been quite the emotional roller coaster ride for our entire family.   We all felt overwhelmed by the thoughts “Here we go again!”  But today I have good news to report as breast cancer goes.

After spending all day at the University of Michigan meeting with surgeons, radiologists, oncology, etc., mom got great news.  Her cancer is Grade 1, very slow growing, a small 1.5 cm tumor, no lymph nodes, no chemo, 90% estrogen positive, and most likely no radiation, however, they won’t know that for sure until after surgery.  She will have a wire-guided Lumpectomy in about 3 weeks with no drains.  Mom was so relieved about that as she helped me with my drains and hated them!   The surgeon indicated it was miraculous mom ever found the lump.

Mom’s parents lived into their 90s, aunts that lived to be 97, and no cancer ever in generations of  family members on her paternal and maternal sides.    Mom has eaten a healthy diet, been extremely active, and weighs within 10 pounds of her weight when she was in her 20s!  If my mom got it, anyone is at risk.  Well, we know that, but this makes it more clear to me!

The genetics counselor thinks it is rather a fluke that both of us got breast cancer, but it sure makes me wonder about environmental factors.  I had far more reason to have breast cancer as my dad’s side of the family has cancer everywhere.  But mom, they have no idea.

Here is what I can pass on to you that I have learned thus far.

1.  Breast cancer odds greatly increase with age.  As the nurse navigator conveyed to us, breast cancer amps up with age.  She said that so many women feel like once they have reached 65 or 70, they quit having mammograms as they feel their odds go down.  That is WRONG information.  Some older women will tell you they don’t want to look for anything.  Relay to them how early stage breast cancer is far easier to deal with than later stage!  Know your facts and make every attempt to get the elderly women in your life to get their mammograms!  

2.  Be sure to be extra nice and appreciative to your Oncologist!  You never know when you may need them again!   Send them and their staff cards of thanks and appreciation, take simple gifts into their office like candy or cookies or vegetables, or whatever!  It is meaningful to them.   I made one call to my Oncologist, and he and his staff bent over backwards to help my mom.  Make yourself memorable in a positive way to your Oncologist and his or her staff.

3.  Remind your moms, grandmothers, aunts and older women in your life (well, younger ones too) to do regular breast exams.  Show them how and what to do.   My mom accompanied me to my last Oncology checkup in April.  On the drive back home, I casually asked my mom if she was doing regular breast self-exams.  She said she was not and had not done one in awhile.  Later that week, she did one, and found an area of change in her breast which caused her alarm.  That is what got her to the doctor!   There was a lump underneath that breast change!  Thank God she found it when she did!

4.  One of the most difficult things about breast cancer is having to figure out what to do.  Now that we have been through it, we know.  That makes the journey much easier to help someone else.  If you are emotionally up to it, reach out and help someone else just starting the journey.  Your input will be invaluable to them.

That is what I’ve learned thus far!  Thanks for letting me share!   I appreciate all of my readers so much!   Love to you all!

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Check out my new Sun Hat Collection at http://www.hellocourage.com !  You don’t have to be bald to wear these, but you can be!

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Selecting Your Cancer Medical Team – Priceless

Quite often I get emails asking my opinion about Oncologists or Surgeons.  Even though the patient has a gut feeling the doctor “isn’t the match for me” or “there’s just something I can’t put my finger on” or “I want someone who gives me more hope,” the patient still feels hesitant to look elsewhere or get a second opinion.   After cancer diagnosis, your head is reeling, your life is turned upside down, but remember, your doctor works for you!!  You, or your insurance carrier, are paying him or her for their services!

The  advice I give is this:  Go to the best doctors now or at the very least, get a second opinion from the best.  Your treatment should be the latest and the best.  Your life depends upon it whether you are Stage 0 or Stage 4. If you do not, you may end up there anyway but in much more dire circumstances. There are fabulous Oncologists and Surgeons in small towns and small hospitals as well as in the largest and best cancer hospitals.  The important part is to FIND THEM!

For example, it is in your best interest to find a BREAST surgeon if you have Breast Cancer, not a General Surgeon to do a Mastectomy or Lumpectomy.  Survival rates are higher when a Breast Surgeon does your surgery.   Johns Hopkins Cancer Center explains the reason for this far better than I can:

http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/breast_surgical_oncology/

The benefit of some of the large top cancer hospitals is that most of them use a team approach.  At the cancer center where I received treatment, University of Michigan,  and at most large cancer centers, there is a Multidisciplinary Tumor Board that meets and discusses every single patient that walks through the door diagnosed with cancer.  Not just ONE CANCER EXPERT  makes the decision, but at least TWENTY-FOUR CANCER EXPERTS collectively decide a patient’s course of treatment.  When I knew that many experts were charting my course of treatment, the burden was off my shoulders!  My trust level increased tremendously.

Perhaps a woman is Stage 1 and is on the fence about whether she should receive Chemotherapy.  Having dozens of cancer experts weigh in is invaluable not only because she will have the right treatment for her, but later she will not have regrets.   My sister’s close friend, Cheryl, was a woman like this.  She initially  she was Stage 1, but then had a few nodes involved, which moved her to Stage 2.  However, her local hospital said because she was in her 60s no Chemotherapy was necessary.  Cheryl has worked in the medical field her entire life and did not trust that opinion for her.  She flew to Houston to M. D. Anderson, the Number One cancer center in the USA, to get a second opinion.  Two of Cheryl’s three children’s lives were saved at M. D. Anderson as both had rare cancers in their 20s when they were given little to no hope locally.  Her past experience taught Cheryl to get to the best right away!  M. D. Anderson recommended Chemotherapy which Cheryl did.  Cheryl has no regrets as she knows she got the best care for her.

Not all of us can travel to M. D. Anderson.  But certainly it could not hurt to travel a few hours or a day’s drive to get a second opinion that could save your life.  Often cancer patients give more time to researching for a new car than they do for an Oncologist and Surgeon.  Please do not be that patient!

At larger cancer centers,  Oncologists only deal with their particular expertise of cancer.  A Breast Oncologist only deals with cancers of the breast and their next patient is not a prostate cancer patient.  Also, Clinical Trials are also more readily available at many of the larger cancer centers.  This is especially important because once again, it may save your life.

We all know cancer is expensive, even if you have the best insurance.  Often people hesitate to go to major hospitals because they question whether their insurance is accepted.  The benefit of large cancer hospitals is they have a lot of clout and will fight for your insurance carrier to cover you at their facility.  Initially, I was rejected by my insurance company and was told my major cancer center was Out of Network.  But with the weight of a big cancer hospital behind me, they were the ones who talked with my insurance company.  Next thing I knew my insurance company  changed their mind to In Network and covered all of my treatment.

Here is a list of the 2012-13 Top Oncology Hospitals in the USA by U.S .News and World Report which is well-respected.  If you live outside of the USA, do your research in your country!  It is so important!

http://health.usnews.com/best-hospitals/rankings/cancer

A woman recently wrote this sad plea on a Breast Cancer Discussion Board one month before her death.

“I am looking for a treatment center that someone can give me personal recommendations for that facility. I am in (her location) and do not have the confidence in my oncologist after a couple of  incidences. My recurrence to stage IV was within the past month. I have had one treatment of Doxil. We are having trouble getting my platelets up so I can have treatments but my gut feeling is to go somewhere else or I will die.”

I had communicated with this woman in the past.  An awful thing had happened to her when she was GIVEN THE TOTALLY WRONG CHEMO DRUG at one of her infusions.  Obviously, that should not happen.  Within a year after treatment, she progressed to Stage IV.  This woman’s instincts were correct.  She did die and quickly.  When the wrong chemo drug was administered to her in her Oncologist’s office, she gave the Oncologist the benefit of the doubt.  Perhaps this story could have  a different outcome.

Please follow your instincts when it comes to your Medical Team.  And it never hurts to have that second or third opinion.