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Breast Cancer Treatment - What I Learned

Updated on May 30, 2014
Lily Rose profile image

Diagnosed with breast cancer at 37, BRCA2+, double mastectomy, chemo, radiation, mom of two. I've been to hell and back and am an open book.

I have certainly seen my share of doctors over the past year since my cancer diagnosis and I have learned the importance not only of effective communication, but of being your own advocate.

My Learning Experience

Just recently, I suffered for nine weeks with what I thought was Shingles because one of my doctors told me it was.  I did my research and the diagnosis seemed almost spot-on.  I asked that doctor if I should seek care from a specialist and she told me it was not necessary and gave me a prescription.  Long story short, 5 weeks later I spent a week in the hospital with a staph infection and was pumped, intravenously, with some of the most powerful antibiotics there are.  After that week, I went home not much better than when I had arrived.

After a few more weeks, my oncologist thought that it was ridiculous that this Shingles rash was not going away and she sent me to see an Infectious Disease Doctor.  He said he didn’t think I had Shingles at all, that it was a bad, or allergic, reaction to the radiation therapy I had just completed days before the rash started.  He sent me to a dermatologist for a skin biopsy – sure enough, no shingles, just a bad radiation dermatitis that got complicated somewhere along the way.

The dermatologist gave me Amoxicillin and a topical steroid cream and within two days it started clearing up!  Nine weeks of suffering unnecessarily because I didn’t listen to my gut and see a specialist when the rash first started – I listened to my doctor and did only what she said.  I even saw an Infectious Disease doctor daily that week I was in the hospital and he never questioned whether or not it was actually what I said it was upon admittance.  Ok, so that wasn’t very short, but it also could’ve been a lot longer.  This experience taught me a huge lesson and strengthened my feelings on the importance of being your own advocate for your health.

The Business of Doctors

So many doctors these days are scheduling patients every 15 minutes; some even schedule multiple patients for the same appointment time – it happens at my oncologist’s office all the time. What are they thinking?

If it were any other business, they would probably go out of business rather quickly because they would lose customers. Why is okay, then, for doctors to do this? Well, because they know we are there for a medical reason and that is why we won’t just get up and leave and say we’ll just go to a competitor. We’ll sit and stew and when we finally get called into the exam room, we wait several more minutes, then we feel rushed by the doctor when he/she finally arrives and we go home wondering why we let them treat us like that!

If you have any issue you feel your doctor is not addressing, or not addressing completely, be firm. Would you rather drive home thinking to yourself “Why didn’t I just make her stay and answer my question?” Be present and make sure your voice, your concerns, and your problems are addressed.

Don't Be Intimidated

People are often intimidated by doctors.  I have felt that way at times.  We need to remember that they are people just like us.  Actually, perhaps we need to remind them that we are people just like them!

We have to be assertive to get past the power imbalance that our culture has created between us and our doctors.  Don’t accept a simple “no” to a test you feel you need, whether it be from the doctor not feeling it’s necessary or not wanting to do it because your insurance declines it.  If it’s the latter, ask your doctor to provide more information to the insurance company and urge them to reconsider authorization.

Be Proactive

We all need to be proactive in understanding the health care we receive to protect ourselves from mistakes or errors and assure we get the treatment we need.  Don’t hesitate to get second opinions, and sometimes even third opinions.  Remember, doctors know a whole lot more than us, but they most certainly don’t know it all!

Take a more active role in the process.  Advocate for the best outcome from your treatment, no matter how significant or insignificant it may be.

Be Intelligent

After being diagnosed with an illness, you’re not expected to understand all the minute medical details, but you should do at least a little bit of research so that you aren’t overwhelmed at your first follow-up visit.

Know how your body works. Write down illnesses and injuries you’ve had, medications you’re allergic to, medications you’re taking and dosages, how you respond to medication.

Being curious about the particulars of your illness and what to expect, or possibly expect, could save your life.

As stated above, today's healthcare system is all about increasing the numbers of patients seen by doctors (while reducing the reimbursements and coverages – that’s a whole other article!) Be prepared for your doctor visits. It shows the doctor that you’re part of the team and not simply a victim. Being curious may even get the doctor to think twice about a test, a diagnosis or a treatment. It lets the doctor know that you’re serious and that you really are in charge of your own health.

Make A List And Check It Twice

I have gotten good at remembering to write down questions or comments I have before appointments and when there I simply don’t let the doctor's rush, rush, deter me from getting what I need from him or her.

When you see your doctor, take a list. Write down questions and concerns and prioritize it. Discuss the most important things first, so if it turns out that you don’t get all your questions in, at least you get the most important ones answered.

Ask A Lot Of Questions

Being curious and asking a lot of questions may even motivate your doctor(s) to think about your questions or even do some research to be prepared for your next visit.

Being your own advocate gives you the presence of mind to partner with your doctors. Ask questions at every stage of the game. When you feel strong and assertive, rather than like a victim, it can actually improve your body’s immune function. Again, that’s another topic all together.

In conclusion, we all have to be in control of our well being.  We can do that by being well informed and well prepared when we see our doctors.  Having your list or prioritized questions to ask the doctor will allow you to optimize the time you have with them.

Simply put, YOU are your own best advocate.

© 2009 Lily Rose


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    • Lily Rose profile imageAUTHOR

      Lily Rose 

      7 years ago from A Coast

      Well I'd hate to give medical advice since I'm not a doctor but if I recall correctly I was able to wash but I had sutures with tape over it and was told to wash gently and let the tape fall off on its own eventually. Good luck!

    • KathyMcGraw2 profile image

      Kathy McGraw 

      7 years ago from California

      Thank you LR ;) For now, I am just waiting for the pathology report to come back. Funny, the only question I didn't find an answer to was could I shower and wash the incision that was glued together :)

    • Lily Rose profile imageAUTHOR

      Lily Rose 

      7 years ago from A Coast

      And that's exactly why I wrote them all - to help anyone I can in a similar predicament. Feel free to ask me any questions and I'll do my best to respond. Thanks!

    • KathyMcGraw2 profile image

      Kathy McGraw 

      7 years ago from California

      Thank you....I found this, and your others, at just the right time. I am doing my research on what to expect on the 1st follow-up appointment.

    • Lily Rose profile imageAUTHOR

      Lily Rose 

      11 years ago from A Coast

      I hope so, too, Deni - that's why I wrote it. Thanks for your comment.

    • Deni Edwards profile image

      Jenifer L 

      11 years ago from california

      Wonderful hub! I hope this finds many people who need to read it.

    • Lily Rose profile imageAUTHOR

      Lily Rose 

      11 years ago from A Coast

      Thanks, Have to Laugh. True, true - I sure wish I had been given such a diary. Everything you said is spot on. One thing I think I failed to mention is the effects of "chemo brain" - your brain really stops functioning properly and you memory seems to all but disappear, so writing things - everything - down is the best thing to do! Thanks again!

    • Have To Laugh profile image

      Have To Laugh 

      11 years ago

      Hi Lily,

      Delighted the mystery was finally solved, hope it will be plain sailing from now on. Have had a few such incidences myself.....

      You are so right about asking questions. I firmly believe that every patient should be given a "Cancer Diary" and they should be asked to write down their questions & their own observations for the medical team, (after all there is not a hope of us remembering!) The patient needs to take responsibility in getting to know their medication, what it is & what it is for (and to make sure that they are given the correct dosage!) Patients need to write down all the little "odd" things that happen to them, this way at least they will have more pieces of the puzzle for the medical team to then make up the "jigsaw" of ones current state of health. Patients need to be proactive, with cut backs all over the place, we need to be assertive and follow up on things. The medical teams are brilliant but we are just one little fish in their big big pond of patients. We need to swim for ourselves!

    • Lily Rose profile imageAUTHOR

      Lily Rose 

      11 years ago from A Coast

      Take my word for it - I wish I had absolutely NO knowledge of any of this. That would mean I would be perfectly healthy!

      Thanks to all of you for your great comments and thanks for reading all my ramblings!

    • dusanotes profile image


      11 years ago from Windermere, FL

      Another great article about cancer. You have quickly become the resident expert in cancer subjects. Heck, who needs a doctor to write to us. When we have Lily Rose. Thanks again for a fine Hub. Don White

    • Money Glitch profile image

      Money Glitch 

      11 years ago from Texas

      Great Hub Lily Rose!

      You are exactly right, one must become his or her own best advocate. It is important to research what doctors tell you because many times there maybe other clues that will affect the outcome of a diagnosis. I'm sure this hub will help others start asking more questions and taking notes.

    • Princessa profile image

      Wendy Iturrizaga 

      11 years ago from France

      Sorry to hear about your experience.

      It is awful having a doctor making multiple appointments for one alloted time. We had that in Spain, the doctor always had at least two names for the same time just in case one of them didn't turn up. Sometimes it worked ok, but other times the waiting time was over 2 hours because everybody had turn up.

      A big difference with France, here I hardly wait 15 to 30 minutes (if I have to wait) and the doctors take all the time you need. My pediatrician always has a long chat with my little ones because she likes to practice her languages. It is so different to Spain, I am glad that we moved here.

    • rmcrayne profile image


      11 years ago from San Antonio Texas

      Lily I'm sooooo glad you wrote this.

      Isn't it too bad that doctors can't be great patient advocates?!

      My last couple of years on active duty, before I gave up on Western Medicine in favor of Alternative Medicine, I started taking a leave day on my doctor appt days. That way I was not rushing from caring for someone else, anxious about being late, and checking in with my heart racing. I started thinking about appts like preparing for a school assignment.

    • breakfastpop profile image


      11 years ago

      Fabulous and important Hub. I firmly believe that each and every one of us must listen to out gut feeling and trust our instincts. If what you are hearing from your doctor, doesn't feel right, move on and get another opinion. This really brings home the importance of maintaing our freedom when it comes to health care. The last thing we need is another layer of uninformed bureaucrat telling us what to do.

    • Lily Rose profile imageAUTHOR

      Lily Rose 

      11 years ago from A Coast

      Than you Catherine and cjv123. I'm sure we have all at some point "been there". It's hard for a lot of people to put themselves first - especially moms (speaking from my personal experience as a mom, of course) - but we all need to know that at some times, under some cicumstances, it does have to be "all about me."

      Catherine, you're right, and especially the elderly could benefit greatly from having someone else be their advocate. There even exists businesses that will do this for the elderly, should they not have loved ones willing or able to be their advocate.

      Thank you both for the kind words! I most certainly will keep fighting and get past this!

    • Catherine R profile image

      Catherine R 

      11 years ago from Melbourne, Australia

      You make some really good points. I know what it is like to get the short end of a doctor's attention. I think it does help to have someone else to go to the doctor with you though - someone to also be your advocate. Because if you are not well then you maybe don't have the strength to fight your case. I am sure you know this. You have gone through a lot and you seem to be doing it with amazing strength. My guess is that your hubs on your cancer experience will definitely be of help to others in the same boat. Keep fighting!

    • cjv123 profile image


      11 years ago from Michigan

      Your article is not only are a great public service, but it's very pleasant visually as well. Your attitude is amazing especially with what you're going through. I pray that someday - like my mother - you will be declared cancer-free!


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