Breast Cancer Chronicles: So The Breast Cancer Has Spread To My Lung

Why Do Some Doctors Lie?

12/18/2012 A couple of weeks into breast cancer radiation therapy, the radiation oncologist thought he saw something in the weekly chest X-ray. I was sent for a CT scan with contrast. Later in the day, I received a call from the radiation oncologist and was told that instead of one hilar lymph node involved, there were now three, but that was fine, he was taking my case to the Tumor Board to discuss my case, as if that would make everything better. He also wanted to see me the next day.

In all my years as a patient advocate, I have always insisted that any client faced with a life-threatening illness have someone accompany them to their visits with their doctors, so when none of my children could go with me, I panicked. But let me back this up a little. I do not like this doctor and I have not trusted him from the very beginning. Back in medical school, I am quite sure that he graduated with honors in the class titled, 'GOD 101'. Some doctors take that course, but thankfully, many others skip it. From the beginning, he treated me as if I was an idiot, and I did not like it.

My older daughter said, "Mom, Ruth is a nurse. She will go with you. Ask her." My daughter knows Ruth. Ruth ran the local GO Team during the election and I had just met her. But I called Ruth and she said, "Let's go". I picked her up, we went to the radiation center and I had my radiation treatment. The nurse said that the doctor would see me, and Ruth and I entered his office. He began by saying that the tumor board had met and that they had decided on my course of treatment. Sorry, Doctor, but I make my own decisions based on fact and supporting information. I told him to pull the CT scan up on the computer- I needed to see it. He was surprised, and maybe because Ruth was taking notes on a legal pad, he did as I asked.

Immediately, I saw only two lymph nodes (he had said there were three) in the hilar region lit up, but I pointed to a spot IN the lung that looked like it was attached to the heart. It wasn't, I knew, but that is where it is. I said, "That is NOT a lymph node. That is a mass and I can tell from looking at it that there is no way that a biopsy can be done." The doctor told me it was not a mass, it was a nodule. I know that the only difference between a nodule and a mass is the size and he was right. The 'nodule' is still under 3 centimeters. Once it grows to 3 cm, it will be called a 'mass'. He said they could actually get a biopsy, but that it would involve a major surgery. I am not willing to do that because I know what that brightly lit nodule is. It is breast cancer in the lung.

So, the tumor board decided that I should proceed with the radiation and have another CT in 2 months. Told him that was unacceptable, that the CT would be in one month. It was agreed.

I got home and put in a call to my primary oncologist. He was at the Tumor Board. I wanted his take. He said there was much discussion and many varied opinions, so I gave him mine. I told him that this was breast cancer spread to the lung. He said that every physician there agreed that it is. I told him that my best bet at this point, as I understand it, is hormonal therapy called Arimidex. He said that many there stated that this is my "only bet" to slow this metastasis.

Then I said something that I thought would shock him. I thought he might disagree. I told him that I wanted to stop the radiation immediately and start the Arimidex. Instead of disagreeing, he told me that several of the physicians there, including him, voted for that course of treatment, especially because continuing the radiation to the breast would compromise later use of radiation to the lung, if it becomes necessary. Let's see...Breast cancer reoccurrence to the breast, in which case I have a mastectomy, or reducing the size of a lung tumor so that I can breathe? Hmmm! The radiation oncologist did not give me that little piece of information. While it may not qualify as an outright lie, it is a lie of omission.

The radiation therapy discontinued that day, I started the Arimidex and will have a CT scan on January 10th.

This is MY dance with cancer! I will lead in this dance. I will decide where and when and how Cancer and I are going to dance! I will question everything, but I will trust my primary oncologist. HE has earned my trust. He told me from the beginning that he would never lie to me, and he hasn't. He also told me the other day, "Jillian, any doctor who questions your intelligence and analysis? Well, he is a fool."

Doctors Are Not God!

Doctors are not God! They are highly trained, some better than others, some smarter than others. There are those who are not so smart and there are some who believe that they run the show. When you encounter a physician who refuses to be questioned or challenged, run away as quickly as you can. It is YOUR responsibility to act as your own patient advocate, to control your own dance.

I have had some incredible doctors! I have had my share of the not so great ones, too.

Just so you know. Social Security Disability (SSDI) has a list of what they call Compassionate Allowances. Please see the website page for a complete list:

They will process claims for Social Security disability and Medicare in days, not the usual months that it normally takes. Breast cancer with distant metastases is one of the conditions on the list.

And so, my dance continues. It will, until the day the music dies...

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Comments 24 comments

Gemini Fox profile image

Gemini Fox 4 years ago

Oh, Jillian, so sorry to hear you've gotten some bad news! It does sound as though you understand what is going on, and I'm glad to see you're not just taking what the "gods" are saying lying down - some of them can be such jerks. All best wishes and prayers.

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Robertr04 4 years ago from Detroit,Mi.

My sincere best wishes. Have you considered alternative healing along with the Amiridex treatment?

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Thank you, beautiful lady! I say that because your picture does show that you are stunning! That, coupled with smart and kind- the perfect package!

It is bad news, but the primary oncologist and I knew from the beginning that just the one lymph node lighting up indicated probable metastasis. We knew, but hoped. I just have now put my hope on the hormonal chemotherapy and I am pretty sure that it will help. Plus- I am not going anywhere too soon. I have too many things undone- my younger daughter (32) still has things to learn from me- well maybe not learn, but absorb- I have two grandkids that I plan to enjoy for as long as possible- plus, I am a fighter----always loved dancing and fighting!

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

I have but have to proceed cautiously. Even though I have controlled diabetes, it is a major consideration and many of the alternative treatments can compromise the kidneys- but if you know of anything promising, please send me info- I will read and research. And I will appreciate it. Thank you!

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Brenda Durham 4 years ago

Jillian, I'm so sorry to hear about this, but am so glad you have a fighting spirit about it and a positive attitude along with using your intelligence. You're in my prayers and I admire you for your strength.

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Thank you, Brenda! We all have to have a fighting spirit because we all have battles to wage. It is part of life, and you gotta love life. Right? Please keep me in your prayers. Prayers will give me some strength!

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HSchneider 4 years ago from Parsippany, New Jersey

I am very sorry to hear this bad news, Jillian, but I am tremendously glad that you are questioning everything and taking the lead on this fight. I am also not surprised that you are. Best of luck and do not give an inch to cancer. Everyone wants you around for a long time. We need you in this endless battle against the GOP.

cathylynn99 profile image

cathylynn99 4 years ago from northeastern US

i recall reading that femara (letrozole) may be more potent than arimidex (anastrozole). worth a question to your doc.

cathylynn99 profile image

cathylynn99 4 years ago from northeastern US

J Clin Oncol, 2012, aug. 20;30:2977

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Hi, Doc-

I had heard of Femara, but never bothered to research it. I will now be asking my primary oncologist-having increased cough-don't know if it is from the radiation or the arimidex- my back is killing, and am so tired can barely move- I better stop- I owe you at least a co-pay now!

cathylynn99 profile image

cathylynn99 4 years ago from northeastern US

cough and fatigue probably radiation-related and should improve. don't know anything about why your back hurts. you may want to get it checked. as a side-note, exercise has been shown to help cancer-related fatigue. can you bring yourself to walk 20 min. per day?

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Robertr04 4 years ago from Detroit,Mi.

When I speak of alternative treatment, I'm referring to herbal dietary supplements. I can't think of any that we use that might put your kidneys in harms way. Try using a green drink, 3 green veg. ( about a handful of each) blend with a pint of distilled water. You should drink the equivalent of 80% of your body weight in ounces/day. May not taste that good, but it has been known to work miracles. Cut out the 2nd hand protein (meat & fish). Your vitamins and minerals should come from the food you eat. No cooked food. Diet- fresh fruits and veg., whole grains. If you must cook your veg. no higher than 120 degrees. Carrot and celery juice a must, 16 oz/day at least. Chew your juices ( swish around in your mouth) thoroughly, both fruit and vegetable. This allows the saliva to mix, especially being diabetic. All fruits and veg. and juices should be organic. You don't need to add more toxins to your body. Keep your bowel clean to allow the toxins to leave your body, a must.

cathylynn99 profile image

cathylynn99 4 years ago from northeastern US

the 20 min. of walking can be two ten min. sessions.

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

I am so sick right now can't even walk to the kitchen, but I had just told my son last week that I needed to start walking again. Going to walk with him when he takes the dog out. I used to walk about 1/2 mile a day until a nerve going to one of my legs was nicked during a surgery- I do need to start again. I am gonna start out slow...I have an appt with the doctor tomorrow morning- thank you, Doc!

ImKarn23 profile image

ImKarn23 4 years ago

I am deeply saddened to hear of your plight, my friend - please know that i have dealt with it peripherally - too often..

my sister had her first bout at 19 and her second at 35 - and is still kicking up shit at 55!

my aunt just JUST finished her second bout of chemo after major surgery for stage 4 colon/liver cancer..she is in complete remission!

Doctors are NOT god - and their biggest mistake is believing they are! When i was pregnant with my first - i went blind in one eye. The neurologist kicked me out of the room to tell my husband that i had MS and that i needed an immediate abortion to begin cortisone treatments...thankfully - i too went for a second opinion and my daughter is now 33 and definitive tests show i never had MS..

All things are possible - have faith! Your oncologist sounds like a great doctor who has your best interests at heart!

Best of luck, dear - i will send good thoughts and clean Karma your way every day..

fpherj48 profile image

fpherj48 4 years ago from Beautiful Upstate New York

Jillian.....We have never met, nor interacted on HP, as far as I recall....YOU, strong and sweet lady, are My HERO. I believe in what makes up your attitude with every fiber of my being.

You are so very wise to be cautious, involved, informed and alert. The God 101 thing is a fairly common problem. Thank Heaven we know to reject it and go beyond, for more opinions and truth.

The day Drs. TRULY understand their patients, take the time to TALK to them, explain all and accept THEIR opinions, requests and the day all Drs will gain far more respect and confidence.

Bless you in your battle.

I hope for you....strength and healing.....positive progress and many many years of playing with those grandchildren.

Bless you and please enjoy a peaceful, loving Holiday Season.....You have my respect and admiration. Paula

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear Paula,

Thank you! If we have the ability, we have to advocate for ourselves. When we lose that ability, we must have others to advocate for us. I have worked as a patient advocate many years and have seen more than anyone should ever see. I have always tried to do the best I can for my patients. Can't tell you how many doctors have been unhappy because they have been challenged. Ultimately, I don't care about their happiness or their egos. I just care about the health and well-being of their patients.

So, now, in my own battle, I am doing the same and my grown children will become my advocates when I no longer am capable. They usually come with me to my appointments and they are not afraid of speaking up. They grew up with the experience of fighting for others-

And I plan to stay around for awhile-

I also wish you a wonderful and joyous Holiday Season!

Stay well, stay happy!

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear ImKarn23,

No, doctors are NOT god- and most of the time they bury their mistakes.

One of the best men I ever met was an attorney first, then one of the finest, most caring doctors I have ever met. He was honest and was never afraid of saying, "I don't know, but I promise you I will find out." I measure all others doctors by the standards he displayed. There are few----there should be more...

What an incredible story about your pregnancy and daughter's birth! I rest my case!

Kiss your daughter and thank God her mom had so much spunk and determination! And still does!

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Robertr04 4 years ago from Detroit,Mi.

I know you may not have a lot of time (or feel like it) for reading, but Suzanne Sommers as written a book called Knockout. I would highly recommend that you and everyone dealing with this condition read it. The knowledge, and hope, that is conveyed, is priceless.

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Robertr04 4 years ago from Detroit,Mi.

I haven't forgotten you, still in my thoughts and prayers. Dr. Gary L. Tunsky, Precision Healing Technologies, Palm Beach Florida, 561-863-1733/888-561-1733. The best I have to offer. I soon shall write a hub on this gentleman's research and findings using alternative healing. Being a natural practitioner, I have used his treatments on various illnesses over the years with remarkable success. I implore you to go to his site, research, and get in touch with him as soon as possible. May our heavenly Father continue to bless you.

ahorseback profile image

ahorseback 4 years ago

Now that we have become friends I will tell you how I feel , YOU are the power ! You will win this battle ! And why , because I can tell you are strong , determined and a fighter ! Please take care of your inner peace all through this ! be serene , seek solace ,all you can my dear !and embrace small pleasures as they show themselves . Miracles do happen , we are praying for you ....Ed!

Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear Ed,

Thank you for your kind words- they come in handy today-

having some rough times the last few days. I need to be reminded every now and then that miracles can and do happen- and more than anything else, I am finding that when I feel my weakest- someone always seems to step up to give me some much needed prayer and love...

Gemini Fox profile image

Gemini Fox 3 years ago

Jillian: if I’m not mistaken, you do not have an HP email so this is the only way to reach you . . . ?

Feel horrible that I haven’t written this ages ago! Had some surgery but that’s not an excuse. Have thought, “Must check on Jillian”, every time I’m on HP, but then didn’t . . . bad, bad me!

First, a VERY belated thank you for the much too kind comment above!

More importantly, hope you are doing ok?! And getting better?! See you haven’t been on for awhile . . . miss your hubs but when you don’t feel well, you don’t feel well. Hope you're hanging in there!

Jillian Barclay profile image

Jillian Barclay 3 years ago from California, USA Author

Dear Gemini Fox (Foxy Lady),

Thank you for your kind thoughts and concerns- I have been unable to write (too sick), and cannot seem to keep my thoughts on track. This whole thing has been very challenging, and for as long as I have been a patient advocate, never thought that I would need one. I was wrong! Without my kids (grown) and my best friend, I think that I might be gone right now. Through all of the scans, meds, etc. have concluded that we are very primitive in our understanding and current treatment options for cancer.

I am hanging in there, but some days are better than others. I do have an email posted with Hubpages-

I hope your surgery was nothing too serious and that you are recovering.

Please take care of yourself and thank you again! Will start writing and reading again soon-just have to get some energy.

My kids keep telling me that I have to eat to get energy- easier said than done, but I am trying!

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