I know some of you are waiting to hear about our meeting today, so here goes… The scan came back showing growth. Here’s the exact wording of the radiologist report:

“The previous noted irregular soft tissue density nodule on the greater omentum has slightly increased in size, now measuring 0.9 x 1.7 cm (short axis x long axis dimensions). No other significant omentum mesenteric nodules are seen. There is no evidence of ascites.” Everything else normal.

HOWEVER, the medical oncologist (Dr. Moore) reviewed Shaun’s case with the surgical oncologist (Dr. Jewett) and the supposed verdict is fat necrosis (i.e. dead fat). The theory is that the omentum suffered some post-surgical trauma and the blood supply was cut off from this small area of the omentum. Over time, the tissue in the area died resulting in the image we keep seeing on the scans. He said that although the area has increased in size, it looks less dense vs. October’s scan. “Softer” was the way he put it. So he kind of explained that instead of a solid nodule growing, it appears more like tissue breaking up.

???

I’ve already emailed Dr. Shayegan in Hamilton who has committed to calling and discussing this with Dr. Jewett next week. This is great news from my perspective as, despite written correspondence between the two hospitals, I’ve never been entirely convinced everyone is on the exact same page.

SO, the good news is (a) the discussion with the doc accurately reflected the findings in the report this time around, (b) “the best in Canada” thinks there’s likely nothing to worry about AND has provided an alternative possibility, and (c) Hamilton and Toronto will soon be communicating without our help!

However, we’re still working on figuring this out and will keep you posted.

Have a great weekend,

J & S

I haven’t updated since Shaun’s 1 year check up (about 3 months ago) at which point a new “nodule” was identified on his abdominal CT scan. Blood markers were normal. While the radiologist flagged the node as suspicious for metastases, both PMH and Hamilton doctors did not seem concerned given its location relative to typical TC mets. However, the decision was made to conduct a follow-up CT 3 months later to monitor the node, which brings us to today…

Just got back from said follow-up appointment at Princess Margaret and unfortunately, it wasn’t very helpful. The doctor told us that the previous node has disappeared and there was a new node visible, but since they ‘tend to see various nodes every time they scan Shaun’ (?) and his markers are normal, he isn’t concerned. Great! Then, as we always do, we asked for a copy of the CT report and figured we were on our way. The doc is long gone when the nurse hands us the write-up which states as plain as day: “there is apparent interval enlargement of a previously described nodule measuring 8mm in short axis diameter currently, as compared with 5mm on the prior study.”

Um… how he got ‘the node has disappeared’ out of this is beyond me. So we ask to meet with him again, point out the GROWTH of the nodule over the past 3 months, he basically reiterates that he isn’t worried, yadda yadda and sends us on our way. This, in combination with previous experiences we’ve had with various doctors, makes it impossible not to wonder if anyone is paying much attention to Shaun’s case at all.

Particularly disturbing because we know that teratoma — you know, the giant mass that was removed from his abdomen when his markers were also normal — does NOT produce tumour markers, is slow-growing, and can sometimes morph into other less treatable forms of cancer if not removed promptly, which is why we hauled our asses all the way to Hamilton to get a surgery date 2 months prior to anything PMH could offer. So normal markers, although better than the alternative, don’t really mean jack.

Obviously I am frustrated. But mostly I’m tired. After all, I am not a doctor. Or an expert on cancer, radiology, or navigating the health care system. And yet, I feel the need to be all of these things because I have yet to be able to truly rely on anyone else. Just for fun, let’s review:

• Shaun would have been given significantly more lung-damaging chemo than needed, according to the world’s foremost TC expert.
• His surgery would have taken place at least 4 months after completing chemo, a time line that made virtually every other oncologist consulted (5 in total) “uncomfortable”.
• He was told to heavy up on coconut oil to address chylous ascites, 34% of which is the type of fat that exacerbates chylous ascites.

And there are other arguably less critical things (e.g. prognosis stats, risk categories, relapse rates, surveillance plans) we’ve been told — when we’re told anything at all — that are flat-out wrong. So how the HELL am I supposed to trust these people with Shaun’s life?! Oh yeah, I can’t.

Which means I’ll be spending the next 3 months sending copies of scans to other doctors and friends, consulting forums, and gathering my own information in the hopes of figuring out whether or not we should be concerned about this growing nodule. Just like I did over the last 3 months. And the 16 months before that. I keep waiting for a time when we can relax in the knowledge that Shaun is well taken care of. But I’m starting to realize that time might never come.

Hell, I don’t even know if this update is good or bad news. But it is news I suppose, so WTF… I share it anyway.

J

First of all, somebody Google “ligament of Treitz” immediately.

Secondly… AAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHH!?!!?!!!

Sweet.

Jesus.

No wonder July 28th, 2010 was both the worst and the best day of my life. When Shaun was wheeled into surgery at 8:00am I almost passed out from fear. Then enormous relief when he was wheeled out over 5 hours later looking, feeling, and sounding remarkably fine. And most importantly, cancer-free after having metastatic testicular cancer for lord alone knows how long.

Also, it’s our anniversary (of sorts) today. Last year we celebrated in a hospital room over ice chips. This year? Harry Potter in 3D, Italian food, and alcohol. I consider this major progress.

In the meantime, I’ve sent Shaun’s latest CT scan to his Hamilton surgeon, Dr. Shayegan. Since he’s the only person who’s seen and probably even touched Shaun’s omentum (ahhhhhhhh!!), I figure he may be able to add some perspective.

In the words of my friend Grace, A LOT can happen in a year.

Stay tuned,

J & S

Shaun and I just returned from Princess Margaret Hospital where we reviewed his latest blood and CT results.

The good news is Shaun’s tumour markers all came back normal, and his lung CT remained unchanged from the scan they took 6 months ago. This is what we like.

However, his pelvic CT showed some changes in his “omentum”. Here we go with the medical terminology again… Imagine a sheet of fat draped around your abdominal organs and you’ll have an idea of what we’re talking about here. So the radiologist noted the changes as suspicious but the doctor wasn’t convinced there is any reason for concern — apparently this would be a very rare location for metastases. In any case, Shaun will have a follow-up CT in 3 months to monitor the situation and as always we’ll keep you posted.

Not exactly the status update we were hoping to provide but that’s the latest.

Hope you’re enjoying your summer,

xo J & S

Just a quick note to let you know last week was Shaun’s 8 month surveillance appointment and once again his blood markers and chest x-ray came back ALL CLEAR!

Night sweats continue to be an issue on and off but at this point everyone is pretty confident this is hormonal, so we continue to adjust his hormone replacement meds and cross our fingers for the upcoming summer months. Shaun’s next appointment is in July, when it will be almost 1 year since his surgery (!?!?).

Certainly this is all great news but at the same time there are always stories without such happy endings. This past week alone, our friend’s mother passed away of colon cancer while a fellow tc-forum member died suddenly of complications from his chemotherapy treatment, which I didn’t even know was possible. He was 36 years old and given the same “great odds” Shaun was given…

So sure, early detection and the right doctor(s) and the right treatment and a positive attitude and a clean diet can help. But sometimes this disease is stronger than all of those things combined, and bad things happen to good people. More than anything, I wish no one ever had to experience or witness the fear, anxiety and pain associated with a diagnosis of cancer. I hope in a hundred years from now people read about our era and think, “I can’t believe people actually died from that disease.” Kind of like how we think of the plague or consumption today.

All this to say, the next time you feel the need to buy a new pair of shoes, or a bag, or a new driver, or a video game — donate the money to cancer research instead. Because this is completely ridiculous.

xo J & S

This is a post that is long overdue. It was exactly 1 year ago today when I was told I had a “large abdominal mass”, and now it’s past time to say my thank you’s!

First of all I would like to thank Julianne. Jule, if it wasn’t for you I wonder if I would still be here — your relentless Joogling undoubtedly saved me! Thank God you came back into my life. You have always been there for me and I don’t know where I would be without you. You have certainly set the standard in so many ways. This blog you created has been an amazing work in progress, always informing everyone with wit and humor. You have been our voice and I know you have inspired countless people, including me, along our journey. I love you more than words can say.

Secondly, I want to thank our families. The trips to the hospitals, picking up prescriptions, grocery shopping, sleep-overs, house renovations and maintenance, bringing dinners, making dinners, house cleaning, helping me get out and walk, taking care of things when I couldn’t. Your support, the time you shared, and all the love you have shown us… I will always carry that with me.

To all of our friends and supporters, some known and some unknown. Your countless prayers, well-wishes and all of the incredible cards, carpooling, visits, free lunches and laughter shared. Sometimes I laughed till it hurt and then I laughed a little bit more. You have touched me deeply and I’ll never forget the overwhelming feeling of being cared for by so many people. Your thoughts and actions did make a difference! I know this was one of the main reasons I felt well during treatment and recovered quickly from my operations. I have also really appreciated all of your blog comments and I’m sorry I didn’t reply to more of you.

Finally, thank you to the many doctors, nurses, caregivers and experts. Without them I would definitely not be here now! In particular, Dr. Bobby Shayegan and Amber Kirk, Laurent Sirois, Manny Martinez, Ruth Ann Baron, Dr. Lawrence Einhorn, Dr. Michael Jewett, Alastair Cunningham, Claire Edmunds, Dr. Andrew Mathew, Ralph Moss, Marsha MacLeod, Lucy Ruggiero, Sergey Moskovtsev, and last but certainly not least, Dr. Banana (long story).

It’s hard to believe it has been a year since I was diagnosed. I will never forget your genuine acts of kindness and all the love you have shown both of us. It has changed me in so many ways.

Thank you from the bottom of my heart,

Shaun

It’s been an eventful week!

Early this week I had an appointment at Mount Sinai and in order to get to the office in question, Shaun and I had to retrace our steps from last February/March. The route we took to the emergency room, where we first heard about the abdominal mass, the hall he walked down towards his first surgery. Even the smell of the cafeteria made me feel sick — their grilled veggie sandwich was all I ate for the first two weeks of that nightmare. Ugh. We tried to recall the sequence of events and a few of the finer details. Some are foggy while others are burned in our brains. It was a reminder of how far we’ve come.

Speaking of which, Shaun had his follow-up on Friday at PMH and:

6 MONTHS ALL CLEAR!!

Tumour markers are normal, CT scans have never looked better, and as an added bonus he’s gained 11 pounds since his TPN/no-fat phase.

One small hitch: I originally thought we would only need to get through 1 year of all clears before the chance of recurrence was drastically reduced. But in fact, it’s TWO years of all clears — so 18 more months to go!

In any case, a great way to start the new year. Hope January is treating you just as well.

All the best,

xo J & S

Shaun and I rang in the new year in Toronto with good friends, good food, and in Shaun’s case, great drinks!

And of course, it isn’t a party until you bust out the scar (healing nicely):

I won’t deny that I’ve been very much looking forward to the end of 2010 and its series of traumatic events. But at the same time, this past year will be remembered for other more positive things. Like the amazing doctors, nurses and support group leaders who save the lives and the sanity of cancer patients every day. And the thousands of cancer patients who live with this shitty disease for years with unbelievable grace, dignity and compassion for others.

But most of all, we will NEVER forget how 2010 made us realize we have the most incredible support system of family and friends anyone could ever want. So thanks to each and every one of you for making this past year bearable. We sincerely couldn’t have gotten through it without you.

Wishing you and those you love a happy, healthy New Year full of everything that truly matters.

With love and eternal gratitude,

xoxoxo J & S

This past Sunday marked 4 months ALL CLEAR for Shaun. Hard to believe it was only 4 months ago when he emerged from the operating room less one giant mass of teratoma — and how much healing has taken place in that relatively short period of time. I’m still paranoid about bumping into his scar, although he assures me it feels fine as long as I don’t downright punch it. So much for that idea.

Sunday also marked the end of week one at Shaun’s new job!! We are officially DINKS again (a.k.a. Double Income, No Kids)! Shaun scored a sales position at ELTE — a very nice carpet and furniture store in Toronto — where he’ll sell to the interior design trade along with the general public. We’ve been trying like hell to layer his clothes so he doesn’t look like a kid borrowing his dad’s suits. Man. I eat a bagel every day for a week and gain 5 lbs. He eats like a horse for a month and… nada.

Anyway, if you need a high-end rug you know who to call!

xo J & S

I apologize for my month-long absence but frankly, I needed the break.

Now here we are: 110 days since Shaun’s surgery. I’m using days rather than months because his surveillance schedule got a little screwy with all the hospital stays. The normal plan would be a check-up every 3 months from the date of surgery as follows:

Instead we were at PMH on Friday reviewing his results, and it’s official:

3.5-ish MONTHS ALL CLEAR!

His chest x-ray came back completely clean and both markers were normal. The only disturbing news was finding out he only weighs 160 lbs, which is just ridiculous for a guy his height. This certainly isn’t from lack of eating or any food restrictions — things are definitely back to normal on that front as evidenced by Friday’s boys’ night out which apparently involved raw deer, calf brains and duck kidneys… or some damn thing.

And yes, we know the surveillance plan adds up to a higher-than-average number of x-rays and CT scans in a lifetime, which means a less-than-ideal amount of radiation. We’ve looked into the possibility of getting MRI’s rather than CT’s but we are told that while MRI’s are best for viewing soft tissue, CT scans are theoretically better for viewing solid masses — which is ultimately what we’re looking for. Also, many studies over many years show that CT pros vastly outweigh the cons when you’re talking cancer surveillance. In any case, we’ll continue to look into other possibilities while ensuring Shaun sticks to the prescribed follow-up schedule.

On a way more fun note, the GU Clinic at PMH turned into a bit of a party. Shaun sat beside a guy he went through chemo with, but neither of them recognized each other with full heads of hair until their names were called! Then friend-of-a-friend and blog reader Phil, came up and introduced himself to us. As a 2 time cancer survivor, Phil called Shaun back in the spring to share his personal experience, and it was so great to put a face to a voice. And finally, on our way out the door we ran into our friend Ramesh who works at PMH! As crappy as having cancer may be, it certainly creates a bond and an instant community among patients and caregivers.

Wow, get a load of me looking on the bright side. It must be that perspective thing .

Hope you’re all well too,

xo J & S