It was supposed to be "Happy" New Year. No luck on that. My husband had the three-month followup CT yesterday following the radiation treatment for lung mets on right hilar nodes. All was looking good till the radiologist (or whoever reads the scans) really put his eyes to the scan late yesterday and discovered two more spots on the left side. Biopsy by a pulmonary interventionist next week.

We had a lovely 20-hour hiatus form immediate worry till the return call today.

Not feeling the devastation I felt last April on initial discovery of mets to lungs. Remaining entirely optimistic that there will be another option for a round of treatment of some sort, depending on biopsy findings.

Kids and hubby all out of house right now, so license to write, and cry just a little. Thank you.

Best,
mary

I'm sorry to hear Mary, and hope the biopsy proves only scar tissue or something else. Unfortionately, it's wait and see until then, but otherwise carry on your lives as best you can under the circumstances. Waiting is the worst. I wish you, your husband and rest of your family a better 2014.

I too am sorry to hear this, Mary. Maintain hope. Even if the spots show cancer I am quite sure there will be treatment.

Im very sorry to hear your bad news! Im sure you are devastated. Please try your very best to think positive.

Best thing you can do is to get your husband seen for at least a second opinion at a CCC. They are his best chance to beat this. Remember, there are several members (including myself) who have gotten thru recurrences.

Best wishes!

Mary,

I'm certainly not a doctor but here's my story:

At my first scan post Tx (appx 3 months) I was told by one of my cancer docs that I had 2 spots in the upper part of one of my lungs that "could not be excluded" but he said "don't worry" (yeah right) "we'll wait 3 months and take another scan. Three LONG months passed and the second scan showed that the first 2 spots had CLEARED (great news) but 2 more spots that "could not be excluded" had developed in the lower part of the same lung. Doc said "not to worry" (yeah right) "we'll wait 3 more months and take another scan". Three MORE LONG months passed and this scan came back ALL CLEAR.

Hope this repeats itself for you!

Thank you all for your thoughts, observations and shared personal experiences. They all helped me get through this day (so far) in a far better way than I would have otherwise. I will keep you posted on the tests next week.

Meanwhile i keep going back to the words of wisdom I've read many times on this site: it's not cancer till the biopsy says it is.

Mary

[quote]Meanwhile i keep going back to the words of wisdom I've read many times on this site: it's not cancer till the biopsy says it is. [/quote]Make this your mantra, chanted every time one of those nasty thoughts or worries enters your mind.

You KNOW you are already on a cancer journey, so no need to spend any time worrying about that. You KNOW recurrence is a possibility for any cancer survivor, so no need to worry about that. You KNOW it is not cancer until biopsied, so no need to worry about that.

Naturally, you are stressed and anxiety ridden with worry while waiting but we all manage worry every day. So, just do your best to hold the image of no more cancer until you KNOW otherwise.

Hang in there,
Don

Well i guess the silver lining is that the biopsy procedure is scheduled for tomorrow morning. I am grateful that we will have answers in 4 or 5 days. These spots were not there 6 months ago so it is incredibly hard to be calm but i am trying.

Good luck and hugs!!!!

Hey mary there is hope... check out the posting by missymoo in the survivors section. Her dad had lung cancer and oral cancer and another mets and he's NED. I am just not sure if it is lung mets or lung cancer... anyway.. she listed his treatment plan... maybe that is something for you to bring up with the drs. hugs.

Cheryl--Good find. I never looked at the Survivor forum before. Now I will read it; what a lift.

Best,
Mary

Just checking in to follow up on the previous posts. There was another PET and CT done this week. The good news is that the cancer is still confined to the hilar lymph nodes of the left lung. The other areas of concern on January's PET have turned out to be either radiation-related opacity that is now healing--or a slightly cracked rib that is now also healing.

So the two spots on the left side will be treated with 30-some doses of radiation starting on April 15th. Whether to use concurrent chemo to enhance the rads has not yet been determined. If new radiation field has any overlap with previous radiation field, then chemo may not be used, as this would evidently cause too much intensity to tissues that fall into the overlap area. Yesterday was the planning scan, so we should know that info soon.

All in all, the week's news was good. The nodes have increased in size (1.2 to 1.6), but remain stable.

Best to All,
Mary

That's good news, Mary. Wishing you luck moving forward.

Hi Mary,

I hate to say this, but distant mets mean you have entered the great "Whack-a-mole" contest. I've been playing this for the last three years and it's actually not so bad, it just involves a LOT of treatment, mostly chemo of one form or another.

My experience is that it usually take 4 months, and then which ever batch of tumors you are treating is defeated, and you have maybe 4-6 weeks before a PET scan to evaluate your progress and determine that there is NED.

90 days later, you get the first follow-up PET, and new tumors have showed up to join the festivities. No big deal, just "rinse and repeat."

I've found this to be very low-key and nothing like the stress you encounter when you get the news the first time, because by now you are both battle-hardened veterans and know how these things go. Very much UNLIKE your first introduction to the disease.

Some caveats and some gratis advice:

When going to an appointment to learn about where you stand, it's important to not attach to the outcome. No matter what you learn, you are learning what is and not what you'd like. Don't think of it as "good news" pr "bad news;" rather think of it as simple information, because that is what it is.

Some times the news IS good news, other times it is not; it's simply the truth.

I know it's a clich�, but the fact is that while it may not always be welcome, the truth is always the truth and it's easiest to deal with when you know it.

Stay on top of your nutrition and hydration. Accept the fact that you will need the same daily MINIMUM water intake of 48 oz for the rest of your life. The water will be crucial to keeping constipation at bay, and equally crucial in carrying the bi-products of the treatment away (toxins and dead cells) before it can make you so nauseated.

(Actually, EVERYBODY should drink 48 Oz water daily, but I digress...)

Join a gym and start to lift weights. You don't have to go for the Muscle Beach look, you are going to build muscle; mass, density and strength.

This will pay off two ways; being fit will help deal with the chemo in ways you can't even imagine (and the odds are hugely in favor of having more chemo along the way,) and being fit will also help deal with the effects of radiation poisoning.

I'm 75 (next month) and my MO told me plainly that he would not normally even consider the latest round of radiation for a man of my age, but was confident that my superb level of fitness made him confident that I would sail through it. And I pretty much have done that.

OK, that's it, thanks for reading. And good luck!!!

Bart