First Post

[aja1121]

I have been lurking, reading and learning on this forum for months now. It was immediately clear to me that you are all an amazing resource. I feel like the time has come to ask for your knowledge and opinions. I know this is a ton of information, so I’m trying to present it with as much clarity as I can muster.

I have been married for 17 years and live in the Minneapolis area. My husband (age 41) was diagnosed with rectal cancer on May 23. He is very fit and healthy, no risk factors for colorectal cancer and no family history. He had been having alternating diarrhea and constipation and occasional blood in the toilet for several months when he went to see his general doctor. Labs showed no issues and dietary changes did not alleviate his symptoms, so he went in for a colonoscopy. The GI doc found an obstructing mass approximately 10cm from the anal verge. Pathology showed “moderately differentiated adenocarcinoma, background adenoma present, DNA mismatch enzymes intact. He also had a CT scan of the chest, abdomen and pelvis on May 23; no other nodules or masses were noted. The report stated that the rectal mass “appears to extend through the serosa.” He went in for a pelvic MRI on May 30. Impression: “Extensive irregular wall thickening of the rectum, extending into the sigmoid, essentially to the field of view concerning for diffuse infiltrative rectosignmoid cancer with extension to and likely beyond the mesorectal fascia.”

At that point, we met with the surgeon (board-certified colon and rectal) and oncologist. The surgeon inspired confidence in both of us right away. She is direct and straightforward but took plenty of time to talk with us and answer questions. The oncologist is very nice, but he is quiet and non-assertive. They staged him as T3 N1 M0, and outlined a plan very similar to that of other forum members with rectal cancer: 30 sessions of radiation/Xeloda, completed on July 24, then time to heal before surgery. He had another CT of the chest, abdomen and pelvis done on September 30; the report mentioned two things that our oncologist told us not to worry about: 1) An indeterminate anterior right upper lobe lung nodule measuring 0.5 cm, previously 0.2 cm and barely visible, which may represent a fissural lymph node, and 2) An area of right hepatic lobe subcapsular enhancement possibly due to differential perfusion.

My husband underwent a lower anterior resection on October 15. The surgeon described the tumor as big and ugly, but said that the procedure went well and she was pleased with the margins. She removed 12 lymph nodes and all were negative for cancer cells. There was one spot very near the tumor that the pathology report called a “tumor deposit,” she stated this was likely a lymph node that had been obliterated by radiation but still had some cancer cells present. The pathology report states: “Tumor invades through the muscularis propria into the subserosal adipose tissue or the nonperitonealized pericolic or perirectal soft tissues but does not extend to the serosal surface.” The pathology report also called the tumor high-grade (poorly differentiated to undifferentiated) as opposed to the moderately differentiated noted in the biopsy.

The recovery went perfectly. His ileostomy was producing liquid output within 2 hours of surgery. He never had nausea or vomiting. It almost seemed too good to be true. We went home after four days and things continued to go well. He was able to eat fairly normally and kept his weight stable. We were both planning to return to work half-days on November 3, and start chemo the following week. At about 2AM that morning, he began to have severe cramps and vomiting. After consulting with the on-call surgeon, we went to the emergency room, where he received fluids and Zofran. A CT of his abdomen showed a blockage in his small bowel. It was unclear whether this was a stricture/adhesion or a food bolus or both. Because he was scheduled to start FOLFOX so soon, the surgeon wanted to be conservative and see if it would pass on its own. He had several false starts where it seemed like things were improving, but would then regress with nausea and vomiting. Late afternoon on day 10 (November 12) the surgeon took him back to the OR. She found three loops of small bowel that were stuck deep in the pelvis, near the sacrum. She cut out the section of one loop that was the most stuck and reconnected it. She was able to free the other two without further resection. His pain is under control and he is up walking around now. So at least we are moving in a forward direction there.

In the meantime, during this endless hospital stay, the oncologist stopped by to tell us that the lung spot we weren’t supposed to worry about had grown, and he’s pretty sure it’s cancer. It is in an area where it could easily be removed with a wedge thoracotomy, but the oncologist thinks we should leave it there as a marker to see if the chemo is working. The oncologist did state that he is a curable stage 4, and that the goal is still a cure. At this point I don’t even know what his exact staging would be, I need to get in touch with the oncologist and ask. Once I know the details, I will add a signature to my post.

I am not sure I have the words to explain how disheartening it was to be stuck in the hospital with no answers on the bowel obstruction and then to hear he is now a stage 4. I just hate this awful disease and how it already seems to be f*cking with us at every turn. I guess I’m looking for insight from those of you who have more experience with this adventure. What are the questions I should be asking? Is leaving the lung nodule in place the right decision? Is starting with FOLFOX the best idea, is it aggressive enough? It’s not that I don’t trust the oncologist, he just comes across as being very business-as-usual about everything. I believe it's important to advocate for your own healthcare needs all the time, not just for cancer, and I just want to make sure that everything possible is being done to ensure my husband’s long-term survival. I don't want to look back with regret that I should have asked or done something more. If there are more details I can provide, please ask. It has been an exhausting couple of weeks.

Thank you in advance for your help, and for all of the support and insight you have provided to so many people before me. I spent countless hours reading and searching the forums and they have been an enormous help along the journey so far.

Niko

[chemo sabe]

It hurts me to read or hear about yet another victim especially a young one. I hope the best for your guy. We all start the journey believing we are getting some personal and custom treatment. But we are not. I am sorry to say that it really is business as usual.

Now they know the original tumor is high grade I can understand the Onc wanting to leave the new spot as a marker. As I understand it, some of these are harder to kill so if the treatments are shrinking the new met, you are getting the right stuff. To continue in a positive direction, the Onc still has him on the curative path and the lung spot is in a location that is favorable to surgery!!

Ease off the research....... will not change the outcome but will cost you sleep.

[heyscott]

I am a stage 3 rectal cancer survivor (at year 4). You husband has the worst of the still curable cases. I would look up the NCCN guidelines for rectal cancer and make an appointment with one of the physicians on the top of the guidelines and get a second opinion.

That said, what your oncologist said does make sense. I would still pay out of pocket for a second opinion.

I would also encourage your husband to make sure his Vitamin D3 level is above 60. Most people are very low and there is only benefit to taking Vitamin D3 in doses about 5-10 THOUSAND IU's per day.

I would also find out if they did gene studies on his tumor. Did he have the PIK3 mutation that would mean he should also benefit from daily aspirin.

Let me know if I can help any further. Stay focused. Ask questions. And move forward......

[Val*pal]

Niko - I'm glad you have started posting, but I'm very sorry that you and your husband have to go through this.

The bowel blockage and additional surgery must have been a terrible experience for both of you. My husband had tons of complications following his resection and had to have emergency surgery 9 days later. I still remember the shock and fear I went through, but he recovered nicely, though in his case it took quite a bit of time due to ongoing complications. He was 62, though in good health other than the cancer.

Because your husband is so young, I would be extremely aggressive about his treatment and get a high quality 2nd opinion, just to be sure. Your current onc is probably fine, but as you know there are the good and the not-so-good in any profession. I insisted that my husband switch hospitals and oncologists after his surgical complications, and I'm very glad I did. He was transferred to one of the top cancer centers (fortunately nearby) in the U.S. Though his cancer was ultimately too aggressive and advanced to be cured, I am left with no regrets about what more we could have done. I know I would have been haunted with regrets if I hadn't insisted.

I know this will be hard to do, but carve out some time for yourself when you can. Caregiving depletes you, so you have to stay strong by finding ways to rejuvenate.

I wish you both the very best.

[FatBob2012]

This is a true conundrum, when an otherwise healthy and fit person; with no family history; is diagnosed with this disease; so unexpected. Lifestyle alone seems to provide a false sense of security.

Another sad example of how the stereotypical expectations of the lazy couch potato patient is not accurate. Possibly delaying diagnostics to those that do not fit in that mold. Science continues to seek out the precursors to this disease; other then biomarkers.

Good news seems to be that being physically fit, and, otherwise healthy, does seem to bode better tolerance of treatment and faster recovery from surgery.

Best wishes to both of you. Please stay in touch with us on the board...it is a great place to get support and information.

[kiwiinoz]

NIko
There are a few of us in the "Lung Thang Gang" and most of us are fighting and kicking.
One person that provided me a lot of hope, when I had none at the time of diagnosis was Eric, AKA Brownbagger who is coming up to 6 years from diagnosis and still kicking around. I am coming up shortly on 2 years since diagnosis and seem to doing well.
There are many others who have had metastasis to their liver and lungs with no lymph node involvement, like your husband, who remain cancer free in one organ, or both (NED).
I would say that you just need to take 1 step at a time and deal with what is in front of you without getting too far ahead of yourself.
Best wishes, and please keep us in the loop.
Kiwi

[Lee]

Hi Niko,

Welcome, sorry for the reason you are here. Your husband has been thorough so much, I hope situations turns for the better for him.

Because he is dealing with a possible stage IV diagnoses, I would HIGHLY recommend getting a 2nd opinion at a major cancer treatment center. Because of your husband young age, you really want to treat his cancer aggressively and by a team of experts who are on the leading edge of tomorrows technology.

I agree with his onc, the intent should be curative, but it always a good idea to get a couple of different opinions and feel confident about the approach.

Keep us posted. Again, I hope your husband is doing better soon. Blockages are the worst, pain wise.

Lee

[Nik Colon]

I'm from MN too!
where did you go? Second, not sure why they thought nothing of it growing in the first place. They do usually watch small nodules/things, but should have never considered it nothing if it grew!

[aja1121]

We live in south Minneapolis. Not sure if we are allowed to name providers on the board, but his docs are at Minnesota Oncology and Minnesota Colon & Rectal Surgery Associates, both in Edina. PM me if you would like their names.

Like many things about this awesome (sarcasm) disease, things seem to change at the drop of a hat. Here's what happened in hubby's case:

05/23: Colonoscopy, mass visualized/biopsied, CT performed. Biopsy confirms cancer but CT report indicates no concerns seen aside from rectal mass.

09/03: Post-chemo-rad CT performed. Report states, "Indeterminate anterior right upper lobe lung nodule measuring 0.5 x 0.5 cm. Near the right minor fissure and could represent a fissural lymph node rather than a true lung nodule." Apparently this is about the size of a pea.

10/23: Post-LAR CT performed. Report states, "Nodule in the right midlung anterior has increased in size, now measuring 0.8 x 0.7 cm (previously 0.5 x 0.5 cm). May be metastasis." Apparently this is about the size of a ladybug. At this time, the radiologist reviewed the scan taken on 5/23, and stated that in retrospect, it appears that there is a "barely visible nodule in the area measuring 0.2 x 0.2 cm." This is apparently the size of a pencil point, and our oncologist said that it was simply such a tiny thing at that point that the radiologists did not see it until the following scans encouraged them to look back. While I understand his point, it is certainly very frustrating...

[Nik Colon]

Sorry, didn't mean names just place. I go to U of M

[Nik Colon]

At this point and size of some it's watch and wait. The .5+ may show on pet, was one done? CT and pet comparison is best. I have 3, 3 mm spots on lungs unchanged from December and not on pet, but too small to tell. Did not grow or shrink with chemo. Those are the ones they just watch.

[aja1121]

He has not had a PET scan yet. This is the stuff I find both frustrating and interesting... our onc says the original 2mm spot was barely visible, while your team is able to see and watch 3mm spots. How can there be all these little differences between providers when the disease/treatment is literally life and death?

[Nik Colon]

Sorry, I have no idea how it works. 2 mm is pretty small

[aja1121]

I know... just venting

[cathy123]

Just as an fyi, I was told pet scans aren't good under 1 cm so may not be helpful in your case. Hoping and praying you find out these are something other than mets. The waiting and uncertainty is the hardest part of this disease.