Shocking new prognosis for Mom

[Tom]

I am having a difficult time writing this, as I am still basically in a state of shock over what has transpired here in the last week. When I awake in the morning, I have to remind myself of where we stand compared to just a short while ago.

As you probably remember, two Thursdays ago when we went for Mom's Herceptin, I was body-slammed by the onc's report on her recent PET, that her cancer had spread to several other areas of her body, and that the Herceptin was to be stopped immediately, despite my pleas to continue it. My wishes were denied, and I was told that we were at a crossroads, and should consider doing nothing more for her.

I gave my best arguments, and asked why the cancer seemed to have spread to the least likely sites one would have expected. He had no answers to that. I asked why the tumor markers did not rise, still without an answer. I begged for more imaging studies, only to be told that they would be of no use unless I was actually considering additional surgery, though this too was discouraged. I insisted that if the lesions could be identified and proved to be focal in nature, I wanted to keep the surgery option open to reduce the tumor load. Finally, he agreed, and ordered a chest, abdomen, and pelvis CT, and a fresh bone scan. He also agreed to a PPD (Mantoux test) to rule out a hospital acquired tuberculosis.

I took Mom for the testing over the next few days, as I wanted the results to be available for the OTHER, OLDER (agewise), onc to look at for our followup visit. I also dropped to my knees and begged God to help Mom, as I could not bear the thought of losing her so quickly.

The onc appointment came, and she had the usual blood draw before going in to see him. I had my many pages of questions and notes prepared, and all of the wonderful information that many of you shared with me regarding her treatment options, especially the use of Xeloda along with Herceptin. I cannot thank all of you enough, including Joe, for your help on the research. I was prepared to argue my case for further treatment, and began by asking why the cancer would go to such odd areas. He reviewed the earlier PET results, and agreed that it seemed odd for it to be in places like the bladder and colon. The earlier brain MRI had been clear. He then reviewed the previous, and most recent tumor markers. They were all very low.

Then came the bombshell. He proceeded to tell me that he was suspicious of the previous conclusion that the PET results necessarily represented advance of the cancer. I asked if the very recent results of the CT and bone scans I had insisted on were yet available, as it had only been a few days since they were completed. His nurse quickly printed them out from the hospital network computer, and brought them to the exam room. The conclusion was nothing short of stunning. The colon light-up on PET was apparently a simple area of inflammation. The light-up on PET of the hip joint bones was due to healing pressure sores. The "photon deficient" bladder area, described by the PET examiner as most likely an "obstructing lesion", was revealed by CT to be a bladder stone. The suspicious area of the chest wall is most likely a result of my always lifting Mom on her left side, propping my shoulder under her axilla and against her ribs, causing chronic bruising, rather than the development of a contralateral recurrence.

I leaned forward in my chair, trying to digest what I had just been told. I asked the onc to repeat the opinion he had just offered. Again he said, that he had no reason to suspect that Mom's cancer was on the march, and that the Herceptin seems to continue to be doing it's job. He immediately wrote new orders for Herceptin, and kindly offered to resume her treatment then and now if we could wait for a slot to be squeezed into about an hour later. I said that I would be happy to wait, and tears welled up in my eyes. He patted me on the back and told me to hang in there.

I can only say that I now know what it would be like to watch while a firing squad slowly loads their rifles, then discuss where they are going to shoot you, only to announce at the last minute that the execution has been called off. The range of emotions I experienced over the last week cannot be easily described. In some ways, I feel like a complete jackass. I had called the only two close blood relatives Mom and I have left, and they were making arrangements to travel here to see her one last time. I had even begun preparing to make her arrangements with a friend that works in that business. Can you imagine?

I managed to turn my immediate feelings of anger at the other oncologist, into gratitude, as he did after all, agree to order the very tests that ultimately brought the good news. At the same time I thought of how many other people in other hospitals may have had their treatment discontinued, and been sent home without hope, based on an erroneous conclusion. I suspect that this occurs many times over the years with oncologists all over the world.

The message here is a simple one. NEVER, EVER take the opinion of one person as final. If you have suspicions that somebody, no matter how well educated and trained they are, is incorrect, INSIST , no DEMAND , that they investigate further, or go get another opinion. Would you buy the first car you saw if the color wasn't right? Of course not. Do the homework, consult knowledgeable friends (www.her2support.org), and keep asking questions until you are satisfied in your gut. You might also consider using an OLDER more experienced oncologist. I have always been more comfortable with a doctor that has "seen it all" during his or her career. I am sure that both of the oncs are sick and tired of hearing me drop the name of this website when asking questions, but I will mention it more than ever now. If you or a loved one have HER2+ B/C, this site should be set as your homepage. The emotional and educational support available here is as good as it gets, bar none.

I apologize for getting all of you upset, and sending all of you swarming to your research, and typing me your wonderfully helpful posts. I will remind you all that it was your emotional and informational support that helped drive me to find the answers, rather than give up and go home. I cannot thank all of you enough for that effort. I will never forget it. The research won't go to waste, as I am now more prepared than ever if Mom takes a turn for the worse.

At this same moment, I am deeply troubled by the very difficult time that Al and Linda are having to endure. I am going to ask for special prayers for them both at church tonight. I invite all of you to take a moment this evening at 7:15PM, EST. At that moment, many people involved in our prayer chain will be praying for Linda and Al, as well as all of the others of you that are currently suffering from this dreaded quirk of cell division run amuck. I have witnessed first hand the power of prayer many times, and believe in it from the depths of my soul. I feel blessed that Mom has, for the time being anyway, been delivered once again from the precipice, and I pray with all my heart that the rest of you might receive the same blessing. Thank you all for your thoughts, prayers, and advice. God Bless all of you and those that love you.

Humbly yours,
Tom

[Joe]

Great news Tom.. We couldn't have said it better.

Regards
Joe

[Barbara H.]

Wow, Tom! What a story! I'm sorry that you have had to go through this, but you have made us all a little wiser. As many have stated before, your mom is so lucky to have you. And, I hope you have a wonderful Mother's Day Celebration in the next few weeks.
Best wishes,
Barbara H.

[sherri]

Dear Tom,

I'm so glad and thinkful for the good news, I hope we get a good news from Al too very soon. Your mom is so lucky and blessed to have a son like you.

[IRENE FROM TAMPA]

Tom - I am so happy that this story turned out so well.

I have always been of the belieiving that WE have to be our best advocates in this struggle and you have surely proven this to be true.

I applaud your determination to have them conduct more test on your mom because something did not seem right to you. Your mom is a very fortunate women to have you.

I wish your mom the best.

[Jackie]

Tom,

It is so refreshing to see how God will answer our prayers. He is faithful to provide for His children.

[Cathya]

Tom;

I will certainly be saying a prayer for Al and Linda this evening and also for you and your mom. Your efforts have no doubt saved your mothers life again and how lucky she is to have you. You have certainly taught me a very valuable lesson and I am grateful for that.

Best regards,

Cathy

[Becky]

This is fantastic news Tom. I have been thinking of you and your mother all week and I am so happy how things worked out so wonderfully for you. Now... you just need to relax and take a very deep breath. You have been through more than your mom has. If you can, take a walk in the sunshine and do something just for Tom.


Warmest regards

Becky

[Sheila]

Tom
You have given your Mom and all of us new hope and determination in your journey this past week, how lucky she is to have a son like you....you are in my prayers, as is your Mom and Al and Linda.

[StephN]

(Sighing in relief!)
This story is the perfect example of doctors giving up on a patient for any number of biases (age, other health factors, ability to pay, etc.). I am SO HAPPY for your Mom's sake that you persisted and insisted as you did for the further tests to corroborate that what-turned-out-to-be faulty PET scan.

There were just too many unanswered questions to just throw in the towel. And YOU KNEW IT! Just glad that the answers you got here helped you to get on your feet and move foreward with all the tests and followups. And this after the emotional shock you suffered.

We know you will keep up the tender loving care for your Mom, and what a nice early Mother's Day present you both got.

This news made MY day.

[Sherryg683]

What a miracle, you are a wonderful son Tom. I am so happy your moms prognosis is so much better...sherryg683

[jag]

Very Glad To Hear This Tom....i Am Watching Over My Mother Also...feel Just Like You....sorry To Say My First Thought Would Be To Get A Bat And Go See The Old Oncologist....my God What He Put You And Your Mom Through....god Bless And Ill Say A Prayer For Your Mom...as Well As Mine ....may God Bless Us With More Years To Cherish Them....

[Julie2]

Great news Tom, I am so relieved and very very happy for you.

Julie

[clisa]

Tom;

your message brought me too tears - it was so wonderful to hear the turn in the tide. It's not always easy knowing that miracles exist and holding out for them.

In the meantime we can take your words to heart and alwasys keep pushing for more and better treatment from our oncologists.


Lisa

[Sandy H]

Another reminder for us to be pro active in our care or for family or even friends. I question everything and then I research it afterwards. That is awesome news Tom, so happy for you and your Mom. You are so right prayer is powerful! Now, go out and treat yourself to a nice meal, or something special for yourself. Sandy

[tricia keegan]

Tom wonderful news and well done to you for researching and educating yourself on the best way to help your Mom.I am only beginning this journey compared to a lot of you on this site but have mentally filed your advice should I ever need it in time to come.God bless you both.
Tricia

[jhandley]

Hi Tom
I am particularly pleased to hear your news as I am a strong advocate of Q10 and I know you had your mum on 300 mg a day. Here's a hug from down under for you both.

Cheers
Jackie

[Jean]

Tom,
I am thrilled to hear your wonderful news.
So very true - Never give up and always get that second opinion and even
additional opinions...would like to know about your mom's diet...please share.

What a wonderful Mother's day for both of you.
The power of love and prayer - a great combo...

With Love,
Jean

[mamacze]

Dear Tom,

Good and faithful son, you must feel tremendous relief; you give us another reminder that in many ways medicine continues to be an art as well as a science. Tell your mama our thoughts are holding her....
Love Kim from CT

[heblaj01]

Tom,

In the case of an 90 years old lady in my family starting on Herceptin alone, her oncologist stated that if she was to fail responding he would add Navelbine (low dose in view of the circumstances). He also said that DOXIL+Herceptin ( phase 2 clinical trial results recently published) would be an alternate combo though somewhat less gentle than Herceptin+Navelbine .

I also remember a study on a small group of patients showing signs of resistance who were readministered Herceptin: some responded again to the drug.

Finally you can look at what Gina did over the last 4 years: stopping 4 times treatment after a number of IV's when mets disappeared , then resuming IV's when visceral mets returned . She also adjusted the dosage of Herceptin according to the gravity of the mets. This is not exactly the situation of your mother but it shows Herceptin can be successfully readministered in some cases.