Breast Cancer Chronicles: From Stage Zero to Stage Four in Four Months? This Is Not My Best Day...

Finding Out That You Have Stage 4 Breast Cancer

When the news that I have stage 4 breast cancer, or metastatic breast cancer, was given to me yesterday, I was not shocked, but I was dazed and became more than a little disoriented. What? Why? How? When I discovered the lump in my breast in July, I was assured that it was stage 0. What followed was a comedy (not so funny, really) of errors, for which I can find no excuses. A two month delay (thank you, Lois) in surgery being performed and the corresponding tumor growth caused my cancer to become stage 2. The primary oncologist bears no fault in this. He has been extraordinary, but I did not meet him until after the surgery. In fact, I was not referred for an oncological consult until after the surgery, which I find to be a little backwards.

So, the oncologist ordered a PET scan. He said he was concerned about the growth of the tumor, and he did not want radiation started until he had a PET scan. He had a feeling...I went for the PET scan, was injected with the radioactive sugars, and was then told that the scanner was down. They tried to postpone the scan until the end of this month. More delays!

My "sister" (not really my sister) called them from out of state. I was certain that they would not speak to her because of a little law known as HIPAA, but the comedy continued. They not only spoke to her, my dear "sister" spent hours voicing her displeasure and concern and went up the ladder. The heads of the medical corporation (10 hospitals) agreed to let me go to another one of their facilities this past week.

So, on Friday, I was told that the cancer had metastisized and was present in a hilar ( part of the lung) lymph node. Even though the biopsy of the lymph nodes closest to the breast showed no cancer, breast cancer can rarely metastisize to more distant lymph nodes. Lucky me!

Survival Rates

The 5-year survival rate refers to the percentage of patients who live at least 5 years after being diagnosed with cancer. Survival rate chart from the American Cancer Society:

5-year
Survival Rate by Stage

-------------------------------------------------

Stage 0--------- 93% will survive (when I had my biopsy)

Stage I---------- 88% will survive

Stage IIA------- 81% will survive (after delay of surgery)

Stage IIB------- 74% will survive

Stage IIIA------ 67% will survive

Stage IIIB------ 41%* will survive

Stage IIIC------ 49%* will survive

Stage IV-------- 15% will survive (where I am now)

*These numbers are correct as written (stage IIIB shows worse survival than stage IIIC).

No Cure For Metastatic Breast Cancer

If there is anything that I can say that may be of help to anyone else, it is this:

Do not allow anyone, for any reason, delay your treatment! Don't let them give you scheduling excuses or any other excuse. Fight with everything you have! Look at the chart! From 0 to 4 in 4 months is NOT what you want!

I know that there is no cure for what I have. I watched and cared for my mother as she died from metastatic breast cancer. She lived for 4 years after her diagnosis. She was lucky. I was told it can be as little as a few months.

My oncologist and I talked for a long time. I will be having a bone scan early next week to see if I can take Arimidex. It is designed to slow the progress of my disease, but due to many other health issues that I have, I will not be pursuing any aggressive or experimental treatment. My oncologist and I agreed that we would NOT try anything that might shorten my life expectancy more. My family agrees with this decision.

The Final Job Of A Parent

My children's godfather once told me. "If you are a lucky parent, you will have the chance to teach your children the right way to die, with dignity and grace. It will be the last and maybe best thing that you can teach." I will try to be a good teacher...
I do NOT, however, plan to go anywhere soon. As I have said to a friend:

I have places to still go, things to still do, many more people to piss off, and much more laughter, fun and joy to experience.

A Welcome and Happy Update!

UPDATE! NOVEMBER 19TH

My oncologist called this morning. He talked with other physicians this weekend. The interventional radiologist said that he is unable to biopsy the lymph node. After going through my medical history, my oncologist and the others believe that there MAY be a chance that the light up of the lymph node may NOT be metastasis, but instead due to a chronic history of bronchitis and pneumonia dating back to early childhood. With no way to tell for sure, he told me that I MUST proceed with radiation and in 2 months we will do another PET scan. He believes that we need to be cautiously optimistic, but hopeful. I am in agreement with his recommendations. I have a bone scan scheduled for tomorrow to find out if I can take the arimidex
For now, things don't look as bad as they did on Friday. In fact, things look pretty darn good...I AM optimistic! I had never planned to just lay down and die willingly.

There is a saying in Latin, attributed to Marcus Tullius Cicero. He said, "Dum Spiro, spero". It is appropriate. Roughly translated it means:

AS LONG AS I BREATHE, I HOPE

I'm sticking with that!

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Comments 20 comments

healthylife2 profile image

healthylife2 4 years ago from Connecticut, USA

I'm so sorry you have to deal with incompetence in addition to everything else. It's so kind of you to share your story to help others. Don't forget that the statistics apply to an entire group. The statistics for an individual are 0% or 100% . I'm wishing you the best outcome possible and you are in my thoughts. Thanks for sharing your journey.


Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

I hope that my story can help others in some small way. I don't know anyone who can fight this disease on their own. It is important to have advocates along the way. My family and friends have been sharing and even leading the way in the fight against the incompetence. Problem is that none of us even realized there would be so many problems that had nothing to do with the cancer, but ultimately have affected my probable outcome.

Thank you for your best wishes.


HSchneider 4 years ago from Parsippany, New Jersey

I am so sorry to hear this awful news, Jillian. The errors that caused the delays in your treatments and procedures are unacceptable but unfortunately common. I am glad to hear that you are keeping as positive as you can and making the most out of your life. This news has stopped me in my tracks. You are in my thoughts and prayers. Keep writing and keep living. We all still need you.


CreatePerfection profile image

CreatePerfection 4 years ago from Beautiful Colorado

Dear Jillian,

I have not been on HP for months and am so sorry to hear about this. I know it is not my place to give advice and I hope you will forgive me, but I had a friend with stage 4 cancer recover fully and I want to share her treatment with you. She went to a naturopathic doctor and was advised to eat only organic raw foods, purified water and juices, herbal teas and pure oils such as coconut oil, which she did, and at the end of 6 months, she no longer had any sign of the cancer. Along with this, she meditated every day for at least one hour and did deep breathing exercises for 10 minutes before each meditation. I so appreciate the amazing woman that you are and that I have come to know on HubPages. I send you love and healing light.

Lela


Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear HSchneider,

I plan to keep living, keep laughing, and keep writing for a long time to come. As I said, I have many more people to piss off (with my writing and very big mouth)and I still have many friends to meet. You are dear to me, Howard! I have so much respect and admiration for your keen intellect, sense of ethics and justice, ability to remain calm and logical in the face of such passion-filled issues, and without knowing you on a personal level, I feel that I do. I really do think that you should consider running for public office. I would even fly to Jersey and cast a ballot for you, using some (Hah!) dead person's name, of course...See how easily I can piss people off? I look forward to talking to you and reading your masterful writing for a long time.

Dear Lela,

If I had known something like this would bring you back to Hubpages, I would have done it sooner. I miss you, Lela! Your input is not taken lightly. I will, in the next few months, start doing alot of research on my own. The diabetes is a major consideration when dealing with this-Had damage to my pancreas and other major organs in 2000 when there were tumors removed. It has been under control for a very long time and I already am pretty careful about what I eat, although I must admit just simply have to have, on some occasions, my favorite sinful ice cream. Thank you for your love and please keep sending me healing light. It is needed!

And Congratulations to your friend that has beaten this!


CreatePerfection profile image

CreatePerfection 4 years ago from Beautiful Colorado

Jillian,

You are the dearest of people. Without ever having met you I feel such love and affinity for you. I pray for your immediate healing. You are a voice from the light on a planet where darkness is much too popular. Every time I think of you I will see you bathed in healing light. Hugs and kisses to you dear friend.

Lela


Kim Grbac Diaz profile image

Kim Grbac Diaz 4 years ago from Upstate, New York

Dear Jillian...firstly, thank you for sharing. That is very brave. Secondly, you will be okay. You are stronger than this, your worst enemy. I do believe that. Human error furtherd the disease, Divine Intervention will destroy it...believe! Much love and prayers for you.


Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear Kim,

I believe, and I am one tough lady. Thank you! I will stay positive...


Kim Grbac Diaz profile image

Kim Grbac Diaz 4 years ago from Upstate, New York

all good, healing, and "my mouth to God's ears" prayers coming your way!


lrc7815 profile image

lrc7815 4 years ago from Central Virginia

Jillian, I just found your updated Chronicle and I am so, so sorry to hear your news. Your hospital system has failed you at every turn, hasn't it? It sounds like you are surrounded by strong people who are advocating on your behalf so I won't offer any advice. You are getting plenty, I'm sure. :-)

Having traveled this road with my cousin's wife for the past six years, I will just say this to you. This is your journey. Do it your way. Don't let the cancer define you. If you want to help others, find someone you trust and empower them to tell your story one day. That's what my Lisa asked of me and I was honored to be trusted with the task.

Having worked for a breast cancer program for many years, I just want you to know that I am not afraid to listen or to talk about it. If you need someone who will listen, not judge, and not think they know what is best for you, I am available, night or day. You are strong and I know you will give breast cancer a good fight. Good thoughts and prayers headed your way!


Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear lrc7815,

There is yet another update. Happened Monday morning. I have posted it, but first, thank you for your kind offer. I am always amazed that people are just so good! Anyway, I have cut and paste this update for you- I am Happy! The up's and down's, and twists and turns may do me in quicker than the cancer....(attempt at humor)

A Welcome and Happy Update!

UPDATE! NOVEMBER 19TH

My oncologist called this morning. He talked with other physicians this weekend. The interventional radiologist said that he is unable to biopsy the lymph node. After going through my medical history, my oncologist and the others believe that there MAY be a chance that the light up of the lymph node may NOT be metastasis, but instead due to a chronic history of bronchitis and pneumonia dating back to early childhood. With no way to tell for sure, he told me that I MUST proceed with radiation and in 2 months we will do another PET scan. He believes that we need to be cautiously optimistic, but hopeful. I am in agreement with his recommendations. I have a bone scan scheduled for tomorrow to find out if I can take the arimidex.

For now, things don't look as bad as they did on Friday. In fact, things look pretty darn good...I AM optimistic! I had never planned to just lay down and die willingly.

There is a saying in Latin, attributed to Marcus Tullius Cicero. He said, "Dum Spiro, spero". It is appropriate. Roughly translated it means:

AS LONG AS I BREATHE, I HOPE

I'm sticking with that!


lrc7815 profile image

lrc7815 4 years ago from Central Virginia

Jillian, my optimism and joy pales in comparison to yours but it is genuine. You and I both know that they call it practicing medicine for a reason. It may be science but it isn't perfect science. Thank you so much for sharing your good news. Radiation, yuck. But, you can do it.

I love the attitude. It will carry you just as far as all the drugs and other treatments. I am hopeful too!


Kim Grbac Diaz profile image

Kim Grbac Diaz 4 years ago from Upstate, New York

...here's to breathing and hoping x infinity! good news!


Gemini Fox profile image

Gemini Fox 4 years ago

All best wishes Jillian! So glad you had some better news on the 19th! Don't want to tell you what to do but . . . personally . . . I think you should have a whole pint of your favorite sinful ice cream!!!!


Jillian Barclay profile image

Jillian Barclay 4 years ago from California, USA Author

Dear Gemini Fox,

Since the 19th of November, I have had MORE than one pint of my favorite ice cream! I haven't been able to eat much of anything-the kids think it is anxiety-they are probably right, but the ice cream still works it magic! Let's hear it for the healing powers of Baskin Robbins hand-packed chocolate fudge!


Kim Grbac Diaz profile image

Kim Grbac Diaz 4 years ago from Upstate, New York

yay for the frozen treat, and yay x 2 for your energy and health! Stay strong Jillian...:)


pstraubie48 profile image

pstraubie48 3 years ago from sunny Florida

First of all, let me say that I do not know personally how you felt but I have some idea. My daughter was diagnosed with endometrial cancer and since that original diagnosis it has spread throughout her body including to her breasts, lungs, colon, and her brain She has been told so many times that she should party like a rock star that it defies explanation. She has also been told 'you are not supposed to be here you know" and she just smiles. There are many reasons she is still on the planet....it is not her time yet I suppose ; she has been fighting for nine years...each day of those years is a gift. there have been bad days, and worse days and days I thought she would not make it. But we just keep on keeping on knowing that not one of us knows when our time will end on this planet.

So I guess what I am trying to say is , do not let a diagnosis be the reason that you let the disease take whatever time you have left. Get up every day and live that day. Surround yourself with positive energy and positive thoughts. Live each day ---LIVE each day...do not miss one mintue of any day. My grandson too has cancer and a termnal diagnosis and he is on the planet as well.

You are now on my prayer list and I am sending Angels to you that I hope in some way can bring you some peace. :) ps


Jillian Barclay profile image

Jillian Barclay 3 years ago from California, USA Author

Thank you for telling me the story of your daughter and grandson. God decides how and when we each go. I took care of my mother when she had stage 4 breast cancer. On the date of her diagnosis, they gave her 2 months to live. She lived 4 more years and every day was a blessing! The same is true for your daughter and grandson.

I have beautiful children, and many good people around me. Believe me, I have every intention of being here for awhile!

Thank you for your prayers!


Justsilvie 3 years ago

Jillian, wishing you continued strength in your fight and a healthy future. You are a positive and strong person and I do believe those are major assets when combating any illness.

Your Hubs on this journey are an eye opening lesson to me and I am sure any other person who reads this. Will share because I am sure your story will help others who may have to face this in their futures!


Jillian Barclay profile image

Jillian Barclay 3 years ago from California, USA Author

Dear Justsilvie,

Thank you for the support and wishes.

I started writing these because I was finding that even with great health care benefits, experience as a patient advocate, and getting treatment at facilities that are supposed to be excellent, something was wrong--

Every step of the way, I have experienced delays, incompetence, difficulty in scheduling a multitude of appointments, etc.

I have concluded that there is a lack of coordination of care and it can be, and in my case, that lack of coordination is probably a killer.

I have always said, from experience working with other patients, that if you put 5 doctors in a room, you will get 5 different plans of treatment, and some of them will be wrong.

As I go further with treatment- well, actually, at this point I am on the last form of treatment I can get (except for the yet undeveloped body transplant), I will be writing in depth on the importance of having what I call a cancer care coordinator; one person assigned to pull it all together, schedule TIMELY appointments for the patient, and make sure that each doctor involved in treatment knows what other the other doctors are doing.

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