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What are the odds?

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I am diagnosed with Stage 1 Testicular cancer in November 2011...

Undergo radiation in Nov/Dec 2011...

Then on Monday, 4/23/2012 I'm told I have colon cancer as well...

What triggers these cancers to both seem to show their ugly heads nearly simultaneously?

Also, i told the doctors (Radiation specialist and Oncologist) about digestive system issues and blood in my stool, and they suggest doing the tests after a while??? Maybe the lesson there is that I need to be more demanding on tests / follow-up? Anyway, I wish I knew about both cancers before I opted for radiation treatment for the testicular cancer...

I'm still in shock... And wondering about what happens next.

Surgery? How do I know I have a good surgeon? Other treatments? Other cancers lurking around in me waiting to be discovered? What stage is the colon cancer?

Trying to keep faith and take this one day at a time...

Phil

buckeye2
Posts: 428
Joined: Jul 2011

First of all, I like your picture. You look like a happy guy. The first days after a diagnosis are a blur. Perhaps your testicular cancer prompted them to test for colon cancer and they got it earlier as a result. I am hoping that is what happens. Stay focused and keep smiling. Those of us who have traveled this path for a while know that living is a challenge when faced with the stress of this disease but you will find from reading the posts that there are many out there who are doing it. Keep smiling. Lisa

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I don't know the why of any of this, but I want to welcome you to the board and wish you well. Did the doctors say what they think about the colon cancer? I know they won't have staged it yet, if you just found out yesterday.

Let us know how you do!

*hugs*
Gail

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Hi phil

thanks for your post... I am stage IV colon cancer... stage IV = cancer traveled to another organ (for colon cancer... usually the lymph nodes, to the liver or lung(s).

stage 1 means its just in the colon. if that's your case, your is real good shape.

stage 2 from what i know, means its in the colon inside and outside the colon.

Stage 3 means it's hit the lymph nodes or the blood stream... yet not to the liver or lung or anywhere else.

(hopefully i got that right for you).

my bro-in-law had testicular cancer and it also traveled to other areas of his body... and he had a stroke during one of his testicular chemo treatments which caused other problems...

cancer is a very strange animal... take one day at a time and ask LOTS of questions. And, take control of your doctors.

You asked how to know if you had a good surgeon... if you trust him or her with your life, you have a good one. It's up to you to determine that, and also don't be affraid to interview other doctors if you're uncomfortable at all.

I fired my first two doctors early on, based on their attitude and reactions to my cancer.
they were pretty negative about my future. I went and interviewed several other doctors and i selected the guy with the best attitude and the most williness to try the hardest at saving my life. I wanted the strongest stuff they could give me, as quickly as possible. Don't play around, just bring out the biggest guns in the beginning and lets beat this beast away.

it took a few meetings to find the right oncologist... but it worked and after 16 weeks of chemo, i'm feeling good and i know that the cancer is reducing.
it ain't easy. Emotionally it's vary hard. But they put me on some meds to control all my emotions. (Zoloft) and it works to bring my Highs and Lows a bit closer together.

my chemo cocktail includes: Folfox6, 5FU, Leucavorin, Oxiplaten and Erbitux.
it's working for me.

but remember... each cancer patient is different. But, those give you some drug names that are fairly popular for colon cancer.

other drugs will be FolFuiri and Avastin that i've heard others are on.

i have a port inserted in my upper left chest for the I.V. treatments and its a big help for the chemo treatments.

Hopefully this has helped you...

keep your head up and know that you have a battle ahead of you... but it's NOT a deaath sentance.

my best to you

Joe

http://www.caringbridge.org/visit/joemetzger

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Welcome aboard the colon express,
Two cancers well that's a challenge,
Your attitude will serve you well and where you
Place your faith, well you asked th questions, but I think you
Know the answers.
Trust your gut, get plenty of opinions, an ultra healthy lifestyle never killed anyone.
Unless they got ran over going to the organic vegetable shop.
That was a joke.

Hugs,
Pete
Ps I have found vegan lifestyle an interesting accompaniment to my colorectal cancer, today is great, I hope all enjoy it, after all its all we really have. Tomorrow I leave to God.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Hi Phil,
Welcome to the board. Smart move to come here and ask questions.You will receive a variety of answers on any question you have. Become knowledgable about your options. You will do fine, one day at a time.
Hugs, Marjan

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Welcome aboard hope that your colon cancer was caught early. You will learn a lot here. This cancer stuff doesn't have a normal mind. Stay in touch. Jeff

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

Sorry you had to find us, but glad that you did. The folks here will help you along the way based on their own experiences. You also won't find more emotional support than these folks give.

Yours does seem to be a unique situation here.

You don't mention what type of facility you are being treated at. Here is a web site which lists NCI certified Cancer Centers in the US.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names4.html

Many of the folks here have had good success with great doctors at NCI centers. They will even set up treatment plans which can be done at your local facility if the distance is to great to them. At the very least, use one for a second opinion about how to go about dealing with your dual problems.

Please hang with us and let us know how things are going. Everyone here will at some point reach out a helping hand.

Hugs,

Marie who loves kitties

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I would find additional answers. Once diagnosed with cancer my team searched for more cancer. I interviewed 6 Oncologists. The second one told me not to worry and that I did not even need surgery. If I had listened to her I would be dead. She also billed me the most!!! I told her to be prepared to explain to a court or the AMA for her bill. I never heard from her again. Get a second opinion. Lance Armstrong's books were inspiring also.

Best Always, mike

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I'm meeting with a local surgeon on Friday morning. My understanding is that I'll likely need a Resection surgery, and the staging will probably come after the surgery.

I did find a couple web sites that rate surgeons but I have no idea about how they come up with the ratings.

The two sites are:

http://www.avvo.com/find-a-doctor/colon-and-rectal-surgery/mi.html#sort=patient_rating&start=10

and

http://www.healthgrades.com/

The surgeon I was referred to is rated as an 8.1 (Excellent) -- again, I don't know what goes into the rating.

I also found this site to be very imformative about the staging of colon cancer (pics and all).

Specifically the following link:

http://www.cancer.gov/cancertopics/pdq/treatment/colon/Patient/page2

I'm guessing that since they said the see a "growth" on the colonoscopy I'm not a stage 1, but again, thats a guess...

I'll be visiting this site some more. And I will keep smiling in spite of the cancer!

God Bless us All!

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Dear Phil:
Once u know the stage and get a plan don't hesitate to get a 2nd opinion if u don't have a comfort level w/oncologist of treatment plan.
I am stage IV colon cancer (stage I 2008) and recently had 2 lung surgeries and a liver tumor removed chemo to follow.
The more knowledge u gain gives us some power handling this disease.
The folks on these boards are so helpful.
Please keep us posted and blessings to you.
Barb (I am new to these boards and have appreciated the strength they have given me tokeepss moving forward.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Nice to meet you, sorry it's under these circumstances...
I believe that it's REALLY important to have the best oncologist before you proceed with treatment. Depending on where you live, there are usually "good" Oncs associated with major hospitals. Usually is the key word. There are (unfortunately) quacks and hacks in major hospitals and there are at times incredible Oncs that are at smaller hospitals. It's not uncommon for people to travel to another state to consult with an oncologist then have a local Onc follow the protocol.

When I was Oncologist Shopping 8 years ago, I was fortunate to get hooked up with a very good oncologist out of Sloan Kettering in NYC who does a lot of work with stage IV colon cancer patients who have metastasis to the liver. Hopefully they caught things early in your case.
I did have to find an in network Onc who would follow my primary Oncs plan so my brother and I looked for oncologists who weren't too old to be set in their ways or too young to not have experience. We also looked at where they went to school and did their residency. We avoided ones who were "rescued" from Granada in the 1980's... I'm sure many great doctors came out of there, I just felt more comfortable with someone who trained in the States - no outsourcing :-)

Found a great one who was willing to let another Onc call the shots although he would have done the same protocol which was comforting since it was sort of a confirmation of the plan.

IF you're still with the Onc who dealt with your testicles (pardon me) but didn't "notice" that you have colon cancer now, I'd think about not staying with them. Of course it's possible that they caught this VERY early and it wasn't present in Nov 2011 but if they are talking a resection, it sounds to me like it was present 5 months ago. The big question I'd have is how did they miss this? And, what other surprises might be in store?

Where you are treated first often makes a HUGE difference. It's easier to do things right at first than to undo what someone screwed up.
-phil
(one L or two?)

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Hi Phil, I just got diagnosed thankfully stage one in February and had surgery in March. Just joined today, sorry no picture. I can't give much advice because I'm just starting out myself but if you haven't had your surgery already, go to a cancer center! I'm fortunate enough to be in NY and have access to Sloan and stupidly, I didn't use it. People told me a surgeon is a surgeon. Just 9 short weeks later my cancer is back and now it appears there is a spot on my lymphs. After I had the surgery I talked to a friend who told me that cancer centers are usually more advanced than local hospitals because they do so many clinical trials. That's where I am heading next. They won't take me until I have all of my test results gathered which I will this Monday. Definitely seek out a cancer center, I can't say that enough.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Hey Phil, you've come to the right place. I'm new here -- dx in January with stage 4 colon w/mets-liver. I thought I had gastritis, so "shock" is a good description of my state of mind, probably still. Keep thinking I'm going to wake up. Take all the advice offered here -- it's helped me. You get inundated with so much information, so fast, that this is a good place to come to make sense of it. I wish you the best, my friend, and keep us posted on how it's going. Dan

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Sorry you need to be here - but glad you found us.

What comes next depends on your staging. It sounds like what they found is small enough that they will do a resection, look around the area, test the tumor and surrounding lymph nodes that they remove, and then stage you. Then after staging you'll determine whether follow-up chemo is needed or not.

I don't want to lay more on you right now, but you should consider this. As for the two cancers - you should ask to talk to a genetic counselor, or for genetic testing to be done. This may affect you and may affect your family memebers. I'm not sure about testicular cancer, but I know that if you get prostate and colon cancer, the odds are high that you have Lynch Syndrome - a genetic disorder that makes you prone to multiple polyps and several different cancers. No one likes to hear they have a genetic disorder that pre-disposes them to cancers, but knowledge is power. If you do have it and know about it, your siblings and children can be tested so they have a jump on things. Then all of you can stay ahead of the game as far as screenings. I have a family at my church with Lynch - the father has had prostate and colon cancer and has been cancer free for 5 years now. He and his daughters (both positive for Lynch) get frequent colonoscopies and have all had many polyps removed. Once they are removed, they can't grow into cancer!

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Hi Kathryn, I'm new so I hope it's okay to break off into another topic. I considered genetic testing and then my cousin pointed out that I might not be able to get future insurance. Did some asking and everyone seems to say that the new health laws prevent that. My fear is that the next president will reverse some of the new health laws. I could lose my job since I'm taking off so often and so I fear I'd lost my insurance if I started a new job. Do you know if that family was able to get health insurance after being tested? I do not communicate with my father's family often but it turns out a whole bunch of them have precancerous cells and my aunt has colon cancer and knowing this was "on a need to know only basis". To which I replied, "Oh I see if I had died, I would have needed to know". Unfortunately, I already have rectal cancer now so knowing would have been useful. It came back (or never left) after only 9 weeks so now I want to get the genetic testing.

Fleurydice
Posts: 8
Joined: May 2012

I keep wondering about the folks who are going through this and have no health insurance. You're worried about losing it if you use up your disability. I was laid off from my job after cancer dx (ironically working for one of the major health insurers) and had to go on portability plan which ran out after one year. Very, very thankfully this was one month after Obama's healthcare bill was passed so I could continue to get insurance. My premiums are about 3/4 of my income. As someone who is 63 and a four-year stage 4 survivor and therefore not hirable, I believe it's very important to support legislation that gets the "middleman" out of our healthcare.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

First of all, thank you to everyone for sharing your experiences, thoughts, feelings, and encouragement. I really do appreciate your input and sharing.

I had a lower antarior resection completed on Friday, 5/11. The surgery went well and the surgeon said he removed about 7" of colon. He also reported that there was no sign of gross spread; but that we would have to wait for the pathology report to determine if there was any spread to lymph nodes; etc.

I now have two appointments setup for next Wednesday, 5/23. The first appointment is with the surgeon. He will remove the staples from the incision and review the pathology report with me. The next appointment is with the oncologist that I started seeing for the testicular cancer. I suppose he will go over the pathology report, staging, and discuss treatment options with me.

I called the surgeon's office yesterday and the nurse there said the pathology report was not back yet. Part of me wants to know as soon as possible if this cancer has spread; but part of me would just assume wait until next Wednesday or possibly even wait longer...

Anyway, I'm now in "limbo" and trying to come up with some contingency plans... And would love anyy feedback you all have.

Assuming it is a worst case (cancer has spread) I'm wondering how to find the best oncologist to consult with??? I know I can get referrals to anywhere I'd like; problem is I don't know what would be a best choice. I could ask for a referral to University of Michigan. Or I could ask for one to the Cleveland Clinic. Do any of you have oppinions where I might find the best oncologist for collorectal cancer treatment?

Also, what are your thoughts on waiting until next Wednesday? Should I wait and get the report in person or should I pester the doctor's office and call until they give me the results over the phone?

And what about recovering from the surgery? I think I made a pretty good recovery so far. I was in the hospital from Friday through Tuesday evening, home on Tuesday at 5pm. The biggest challenge was transitioning off the epidural. While on the epidural I didn't suffer much pain and I was able to walk the hospital halls pretty quickly. Off the epidural I tried to tuff it out, but quickly was begging for the vicodin. However, after a painful Monday, today I am feeling pretty good and feeling like I don't even need the vicodin.

They tell me that walking is the key to keeping the recovery moving forward. What are your thougts? What works best for recovering from the surgery? I've been walking three to four times per day, trying to increase my time walking a little each time.

Thank you again for your feedback and sharing!

Phil

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

Phil -- I am sorry you have had to find your way to this site, but you will find extraordinary compassion and wisdom here. I am the caretaker of my husband who is stage 4 cancer with mets to both liver and lungs. It has been over two years since his diagnosis and he is just now retiring at age 71 from his employment. I highly recommend that you get a referral to the UM Hospital. The Cancer Center is involved in the most recent research and it has a highly dedicated and knowledgeable group of physicians and staff. I cannot praise the Center enough. In particular, Dr. Mark Zalupski, my husband's oncologist is supportive, open-minded, good-humored, and will work as hard as you want ... But he is also willing to give small breaks in treatment so you can recoup your strength to move forward. In this journey, I have found that the support of an oncologist who understands the human experience is vital and also someone who will lay out all your options and give you some power to choose your journey for sometimes when hit with such a diagnosis the disease can make you feel powerless. You seem like a strong individual and you have been through a tremendous ordeal both with your original diagnosis and now your colorectal cancer and surgery. As a caretaker, I can tell you that those who love you will want you to allow them to help you ... Let them and tell them what you need. I wish you courage and strength in your recovery. Take care -- Cynthia

Annabelle41415's picture
Annabelle41415
Posts: 6687
Joined: Feb 2009

Walking is going to get you faster through recovery than most anything else, plus a healthy diet. As far as the oncologist, I'm using Henry Ford and they have a great team of doctors there. As to the link about to find rated doctors, mine came in at a 10 so I'm very comfortable with him. U of M is an excellent hospital but so is Henry Ford. It's hard to tell you where to go, but because I'm through Henry Ford I'd pick that one. It's good there are so many great ones out there though. Hope you are feeling better soon.

Kim

steved
Posts: 835
Joined: Apr 2004

Your story is familiar to many here and there has been a lot of good advise above. It sounds like your treatment is progressing rapidly and going well. You are recovering well from surgery and learning about the illness. I am in the UK so know less about your local systems but would offer more general advise about trying to be patient with this. You are very naturally keen to get things done, recover as fast as possible and get results as fast as possible. However in this journey there is alot of waiting around and living in limbo as you are experiencing. You also need to give yourself time to adjust to the news and impacts on you, your life and your family. I would suggest that if it is bearable to wait till you get the results from some one who can answer questions this is preferable as getting them over the phone from a technician which may lead to more anxiety and concerns. Also be patient with your body- yes walking and being active at a suitable level will help everything recover but don't over do it. Rest is also as important both physically and mentally and make sure you keep the pain under control with what ever is needed.

For many this journey is a marathon, not a sprint so conserve some energies for own the path and give yourself time and space to adjust.

steve

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Okay, the pathology report from my resection is in. Adenocarcinoma, PT2, invades muscularous ropria, moderately differentiated, low grade, 1 out of 17 lymph nodes tested positive.

Based on http://www.cancer.gov/cancertopics/pdq/treatment/colon/Patient/page2

I'm assuming I am a stage 3A (at a minimum).

Back in February I had a lung nodule show up on a CT Scan (as follow-up to Testicular Cancer) and a subsequent PET scan that suggested the lung nodule was not consistent with the Pure Seminoma Testicular Cancer. However, the doctor was planning to do a follow-up CT Scan (now scheduled for Monday) to determine if the nodule has grown. I'm worried that maybe the lung nodule is a metastesis of the colon cancer? Or given two cancer diagnosis, possibly a third lung cancer diagnosis? Maybe its nothing.

Anyway, if there is a tumor in my lungs that could mean I am stage 4?

SOME QUESTIONS????

1. What type of chemo is common for colon cancer? Stage 3?

2. How long are you treated with chemo?

3. How can I learn more about this in advance of my meeting with the onchologist? To have context for the discussion?

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Colon cancer tumors on the lung get treated w/colon cancer chemo. My interventional radiologist was able to biopsy them to confirm.
I was worried sick about lung cancer as well. It is better the find out now so try to not worry this weekend.
Depending on lung tumors location they can be wedged out too.
Sure many others on the board can answer your questions more in depth.
I am a newbie as of Oct. 2011
Wishing u the best on Monday.
Hope u have been able to get a couple golf games in. I miss my league and hope I will be able to get out this fall.

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