My oncologist referred to the anti-hormonals as chemotherapy and spent a good deal of time during our initial consulation explaining that chemotherapy would be recommended due to my estrogen-positive breast cancer and that additional chemotherapy may also be necessary depending on the Oncotype DX result. Most people think of chemotherapy as IV-infused, though. I liked the way she presented the information by level setting both IV chemo and anti-hormonals, recognizing that they both have benefits and risks associated.

MsP

trill1943 - my doc said I could drive once I was no longer on pain pills, and the pain wouldn't effect my ability to react while driving, but I wasn't allowed to raise my elbow above my shoulder for 6 weeks.  I was a uni....   I started driving locally about 2 -3 weeks out from surgery.

Kayb,

A-plus!

By the time we get through treatment, I sometimes think we should be qualified to add a few initials after our names, too!

A.A.

Me too - my cousin who is a retired nurse always teases me that I sound just like a medical professional when I casually use medical terms correctly in everyday conversation. On a more serious note, she says that she really admires how I have learned about this and that it has enabled me to talk to my doctors as an informed partner. She said she's sure that it's contributed to the high level of care I've gotten. She says that when the doctor knows that a patient is knowledgeable, it tends to make the doctor step up their game a bit.

Of course many, if not most, humble and modest people get good care - I didn't mean that they didn't.

But unfortunately some of those polite people don't get good advice from their doctors, and pay for it with their health or even their lives. My mom was a wonderful woman who grew up in an era when you trusted your doctor completely, and didn't ask questions. She trusted her doctor when he told her he could tell by feel that the lump in her breast wasn't cancer, and that there was no need for her to have a biopsy. A year later she was properly dx by another doctor, but by that time she had advanced Stage IV b/c with mets to the liver, bones, and brain. She died shortly thereafter at age 58. I was 24 at the time. As you can imagine, that left an impression on me.

Doctors are human beings and make mistakes, get tired, may be rushed, or may be distracted because they are dealing with a sick parent or child of their own. I trust my doctors, but as Ronald Reagan used to say, "Trust, but verify." I feel that I need to be a knowledgeable patient so that I fully understand my medical conditions and options, and can work as a full partner with my doctors in my care. Unfortunately my wonderful gentle mom trusted and did not verify. Also, this was back in the 70's when there was no internet, few support groups, and access to medical journals was hard for the average person to come by. Verifying was much more difficult, and most patients had little choice back then but to trust what a doctor said. That's one reason I'm so grateful for BCO - I've learned so much from other b/c patients, and that has helped me make intelligent knowledgeable decisions in conjunction with my doctors.

Hi Trill..... I did not have any pre-op education on lymphedema (LE). I saw the surgeon on a Weds and he did surgery the following Monday, not much time for education, oh yeah and it was Easter weekend and my whole family was here.

They did give me some info though at the surgeons after surgery. My surgeon wouldn't allow me to lift, and my elbow had to stay below my shoulder for about 5 weeks, I think. He also kept my chest bound until after the drains came out, mine took quite a while. I saw a horrible LE therapist (later found out she wasn't certified and didn't know her arse from her elbow). She handed me some paper work with the general limitations, no BP, no blood draws, watch for infection, etc.... told me there was nothing else that could be done, if my arm started to swell come back, then she proceeded to tell me how horrible it was that I had cancer, how she would just crawl in bed and cry, probably just die, because that would be easier to deal with then dealing with it.... it was horrible. She's no longer there.

I didn't see a real certified LE therapist until I had finished chemo and rads. I wish that I had found her for that initial appointment. She gave me more info in that first appointment then I even knew existed. She taught me lymph massage, really showed me what to do, not to do, look for, how the lymph system worked, it was amazing. I think that every women that has treatment of any kind for BC should see one for at least an eval and initial, baseline measurements. She told me I had mild truncal LE and also in the arm. She was/is amazing and she was only 30 minutes away. I live on the south, central Oregon coast, in the middle of nowhere and figured I have to go to Eugene or Portland for treatment, but I didn't. I think that I had the truncal from the time of surgery and it progressed during radiation. Since then it's progressed be my whole arm and hand, but the truncal is basically gone, I have a little still in my back though. I have learned to control it through compression garments, self LE massage, fist pumps, elevation, and using caution when I do a lot of house work, walking, driving and definitely when flying. Sometimes it swells more, then I take better care, sometimes it gets achy, elevation and rest helps with that. I think that I answered all of your questions. If you have more please let me know.

Linda

Trill - wow, the Laetrile years - I'd forgotten about that "drug". I wonder how many other people besides your aunt died prematurely because people were convinced of Laetrile's effectiveness. I am so sorry for your cousin and the rest of the family.

And your story is interesting in another way in that clearly the husband made the decision on behalf of his wife. I wonder if the doctors even met with her alone to see if she agreed with her husband's decision. It would not surprise me if they did not try to meet privately with her, but just took the husband's word as final. That was an era when women were supposed to largely defer to male authority figures, such as their husbands and their doctors. Today, I think a woman might be more likely to say, "Well, dear, when you're diagnosed with cancer, you can pump as much Laetrile into yourself as possible. But it's my decision what to do, and I'm going with chemo!" That's another way that times have changed for the better.

Love your description of having bad nights, "But then it's morning and things look differently, because hope wakes up with me." I'm going to remember that.

By the way, you may be looking for some reading material as you recover. I can highly recommend "Bathsheba's Breast: Women, Cancer, and History" by James S. Olsen. I read it during my chemo sessions, and loved it. It brought home to me how the b/c sisterhood spans many centuries, and how the brave women from the past have paved a way for us. For instance, as recently as the 1800's, mastectomies were performed without anesthesia. Surgeons were taught to ignore the screams of the patient. Yikes!!! The book also discusses b/c pioneers such as Shirley Temple Black and Rose Kushner (a fellow Marylander!) who fought for the radical notion that women should actually make their own decisions about treatment, challenging the standard protocol of the 70's in which the surgical biopsy and radical mastectomy were performed in a single surgical operation while the patient was under anesthesia. Women of the time went under not even knowing if they had cancer, and woke up without a breast! As Shirley Temple Black said, "The doctor will make the incision, but I will make the decision." Heresy!!!

From the book: "Breast cancer may very well be history's oldest malaise, known as well to the ancients as it is to us. The women who have endured it share a unique sisterhood. Queen Atossa and Dr. Jerri Nielsen―separated by era and geography, by culture, religion, politics, economics, and world view―could hardly have been more different. Born 2,500 years apart, they stand as opposite bookends on the shelf of human history. One was the most powerful woman in the ancient world, the daughter of an emperor, the mother of a god; the other is a twenty-first-century physician with a streak of adventure coursing through her veins. From the imperial throne in ancient Babylon, Atossa could not have imagined the modern world, and only in the driest pages of classical literature could Antarctica-based Jerri Nielsen even have begun to fathom the Near East five centuries before the birth of Christ. For all their differences, however, they shared a common fear that transcends time and space." It's available on Amazon.

The Emperor of All Maladies: A Biography of Cancer by Suddhartha Mukherjee is also very, very good.

Yes, Ruth's recommendation of The Emperor of All Maladies and the Ken Burns documentary are excellent.

Trill,

Yes, it is ex Bronx Girl. I was born and raised there and ventured all the way to Queens for undergrad. Still a die hard Yankees fan, but I have lived in Northern CA for over 25 years. You can take the girl out of the Bronx, but you can't take the Bronx out of the girl 😄

I'm with you Trill. When the Brooklyn Dodgers moved (I'm from Brooklyn), that was the end of baseball for me. Absolute treachery!

New Guidelines for bc survivors:

http://www.fredhutch.org/en/news/center-news/2015/...

(P.S. exbrxgrl - I split my time between Alaska and northern CA - in the foothills)

Good read, AlaskaAngel. Thanks for posting.