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.

[RhondaH]

AWESOME NEWS...ONE of my prayers have been answered...now for the others. Will be there at 7:15.

Rhonda

[Lani]

I suggested the colon lesion might be something inflammatory like diverticulitis, that her rib lesion could be a hairline fracture if she coughed too hard and her hip might be a similar stress fracture if she had had some trauma...TB is indeed the "great impostor" but from what I understand the chances of that developing in that way were less than her having developed a second cancer like lymphoma with that picture (but I didn't want to offer that non-authoritative impression when it would not have been helpful) I don't recall that you had mentioned anything about her bladder at the time, but I have been told that that is a "bermuda triangle" of misinterpretation area as it normally lights up near the end in tests where the radioactivity is urinated out in the end and can obscure other lesions in front or in back of it, hence the need for PET/CTs to clarify in 3 dimensions where the area of "lighting up"lies.

Too much medical "waywardness" has resulted from people "jumping to conclusions"--often the scientific method (make a hypothesis, do experiments or tests and see if they support or refute it) gets forgotten.

I am "pleased as punch" that your mom continues on her "benign therapy"

Lessons to learn--don't jump to conclusions, knowledge is power, it is good to question and to have in sotre a big arsenal of knowledge you may need in the future(to fall back on when things seem to be at crisis level), and the help of others, including those on this board, is invaluable.

None of us know the importance of the multiple dietary interventions you have so carefully researched and undertaken, but it is wonderful to know they were not in vain!!!! And then, again, there were those prayers...

Congratulations again!!!!!

[Lolly]

Tom, you're not the only one who cried...I'm sorry you had to go thorugh some very tough hours and days until being delivered of your anxiety and grief, but WOW, what good news. It doesn't get any better.

I continue to pray for Linda and Al.

<3 Lolly

[R.B.]

Great news Tom.

Lani 10/10 again.

RB

[chrisy]

when I logged on and began reading your post. What at story - and what lessons! Thanks for sharing this journey. I'm so happy about your news - and that I was able to add my own prayers at precisely 7:15 EST.

Much love
Chris

[TriciaK]

What an incredible story, Tom! I had to stop for tears before I could reply! I don't know how old your mom is, but I am convinced that many doctors think if a patient is over 65 there isn't much need to pursue all the avenues. That's why I changed heart doctors. I got the impression from him in the 2 years I saw him that since I was over 70 and had cancer, why take aggressive measures? That makes me just as angry as it does you. When my oncologist first told me I had about 3 months ( that was 2 years ago!) I said "Just you watch! I'll prove that prognosis wrong!" And I did. Now I have a new and aggressive heart doctor and my oncologist listens to me and doesn't make predictions anymore! Your mom is so very blessed to have a son like you! We have all learned a valuable lesson from your experience! And I'm sure many of us added a prayer for you and your mom along with the prayers for Linda and Al . Hugs, Tricia

[CLTann]

We are all pleased with the news. It is another lesson to show that the mighty doctor is not infallable. We should all steer our way clear of hazards which were bad information and bad judgement. Congratulation to you, your mom and all of your friends.


Ann

[Maggie]

Tom, what wonderful news about your mother.. You both had many people praying for you!Maggie

[dberg]

Tom,

This is EXACTLY why this website exists and why I scour it daily. The information and education we receive from one another is PRICELESS!

What a smart son you are! So glad the news is much better!

[Sherryg683]

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