Scan Time - should I wait?

Faith in Him · 10-30-2008, 09:39 AM

Sorry, I feel petty bring this up but I could use some advise.

My onc would like me to have another scan. The skin issue as far as we can tell is under control. My last scan in May was clear.

I want to delay the scan until the first of the year unless I develop a cough or pain. My onc isn't thrilled and my family is a little concerned.

I can't stand the thought of possibly getting bad news before the holidays. Especially for my children who deserve to have a normal, fun Thanksgiving & Christmas.

I'm I being foolish? Please let me know what you think. I'm open to your thoughts.

Thanks.

chrisy · 10-30-2008, 10:21 AM

Well, you have to do what you feel is right. Which way will YOU be able to best function?

That seems to be quite a long time to wait, especially given the ride you've been on this year. That your onc and family are concerned makes me concerned.

I know the fear - and for me it is always a toss up between "possibly getting bad news" before the holidays and "worrying about possibly getting bad news" right after the holidays.

Have you considered that the scans may show "good" news? That might make for a lovely Thanksgiving indeed.

BonnieR · 10-30-2008, 10:35 AM

Ditto what Chrisy said.
Why dont you say a little prayer, ask for a "sign" and then turn it over. Something will present itself to help you decide. At least it has worked for me.
Keep the faith. Let us know.

Believe51 · 10-30-2008, 10:55 AM

On our journeys we always have the right to say NO, for these are choices we make with the information being supplied. Even when something is in our best interest we can say NO. When Ed went for the brain MRI before our cruise we were going to wait for the results until after; we chose to get them before and we even were able to get the Gamma Knife before that vacation.

Follow your heart because there are choices here that you can make. One being "I shall wait until after the New Year" or maybe get that scan and not the results (I am not that strong).

Ed is in a difficult situation here that leaves us almost powerless against what choices to follow through on. The thing is, even knowing we need to repeat the Gamma Knife, this little darling has the right to still say NO. With that being said....

In our experience on this tiring journey I have learned a few things. One of them is that by being on top of things we have avoided many more potential problems than the problem at hand. There is no good time for bad news but good news is always welcomed.

If you were to ask me if you should, I would say YES. If the news is good than the holidays are more the better. If the news is concerning the holidays might be dampened a tad but you would be able to get a game plan together to attack after the New Year. We always want to know. Good or bad....allows us to celebrate or fight.

This has to be up to your heart, follow it. Take all of your knowledge and the journeys of others and put them to work. You will make the right choice for you! No matter what the decision we will be right here awaiting your answer. Best luck.

I love you>>Believe51

Mary Anne in TX · 10-30-2008, 04:00 PM

I think YOU'RE more important than the holidays to your kids.
You'll know what to do, Tonya! Just take care of YOU! ma

Joan M · 10-30-2008, 09:00 PM

Hi Tonya,

Yesterday I cancelled a second follow-up PET/CT of my lung radiofrequency ablation that was scheduled for mid December because I didn't want the results around Christmas and the new year (and it would be a regular scan, not just the lung). I'll do it after Jan. 1.

This type of decision is very personal. For me, I really didn't want bad results to affect my family at all so close to the holidays. Sometimes these decisions also depend on the length of time in between scans, and whether anything else has happened in the meantime.

Your consideration is valid and it's one all of us face at times. But there's no right or wrong. I think it's how each of us feels and what else is going on, too.

Joan

Sherryg683 · 10-30-2008, 09:32 PM

I was diagnosed with BC on Dec 1,2005 and that pretty much put a big damper on the holidays. The following year I had a PET/CT on Dec 1 and was scared to death of the same thing happening, I was also a little superstitious about this being a bad date. I went ahead and had it done because the worrying would have been almost as bad as getting the bad news. When the scan came back clean, it made for a perfect holiday season. I am scheduled to do my scans on January 15 this year, and I am kind of glad I don't have to really worry until after the holiday season. So I know where you are coming from.. there are pros and cons of waiting..sherryg683

Sherryg683 · 10-30-2008, 09:46 PM

btw.. your children are lovely..sherryg683

SoCalGal · 10-31-2008, 12:14 AM

Here's my thinking...
Assuming you would do treatment for a recurrence THEN you should do your scans and deal with whatever you need to when you have the best odds to beat it. IF you want to fight then you must fight when it's most opportune for you to win the fight. Your kids and everyone else would choose YOU over thanksgiving or Christmas every time. "Normal" - I long for those times too but am glad I am here for whatever the normal now means. And my (college aged) kids are glad too (well for the most part and most of the time

.

I understand how it feels to be the one who disappoints the kids (and everyone else) by getting cancer all the time and needing chemo and ruining everything. That's how I always felt and wished so hard it did not impact their lives. That was one of the hardest parts for me.

BUT BUT BUT you owe it to them to do your best to survive so you can raise them. So I say take a deep breath - a friend - an ativan or whatever you need and get your scans. Be a warrior. I know you can do whatever you need to do 'cause you're a mom - and a woman. Be strong. Think of all of us supporting you. And FIGHT!
xoxo
Flori

dlaxague · 10-31-2008, 08:27 AM

I don't think your concerns are petty. Not at all. I do think that it's wrong for people to write to you and tell what you should do. I know that they have your best interests at heart and are sincerely trying to help. But as Believe said, this is a personal decision and you must follow your heart.

Either choice (scans now, scans later) can be defended as good medicine. So as many others have said, we can't tell you what to choose, but we can tell you that somewhere inside, you possess the right answer. You just have to get quiet and listen, and then move forward with confidence because you've made the right decision for you and for your family.

There are two schools of thought here. One says that ultra vigilance is the best approach to monitoring metastatic disease, because if you discover something and jump right on it, it's more likely to be controlled sooner and better and perhaps with less toxic methods.

The other school of thought says that the above approach may seem intuitively better but that it has several disadvantages. One (that you've identified) is the anxiety that ultra-vigilance can cause for some people. Another is that this approach can use up the available options more quickly, so that in the end, it shortens one's time of living with mets. This school would recommend scans only for symptoms, or to monitor treatment of active disease. The theory again being that the cancer either responds to treatment or does not respond - that it's more about the biology of the cancer than about the amount of the cancer. The only caveat here is that this approach does not apply to brain mets - there it is clear that the smaller it is when detected, preferably before symptoms announce it, the more and better the options are for dealing with it.

My sense is that on this list, most people attend the first school. On other lists, and face-to-face, I know women who attend the second school and are very happy with that style. Again, personal decision. But to make the right choice for you, you do need all the information, presented in a balanced way.

Some oncologists are firmly planted in one school or the other. Others tailor their approach depending upon their patient's desires.

You could split the difference. Brain scan now, the rest deferred until January. You didn't say what kind of scanning your onc had in mind.

Keep us posted - about how you come to the decision, okay? And know, absolutely, that it will be the right decision for you.

Love,
Debbie Laxague

Faith in Him · 10-31-2008, 09:51 AM

Thank you all for your wonderful words of wisdom and support. YOU are giving me the courage to look at both side and make the right decision for me.

Tonya

Rich66 · 10-31-2008, 10:40 AM

As one of the few "kids" of a cancer patient, I would hate to be any part of/reason for a delay in dealing with the situation. As an adult who, at least chronologically, could be in your position..I wonder how I would decide.