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First time here. Hello everyone

adrianchud's picture
adrianchud
Posts: 5
Joined: Apr 2013

Hi this is my first time on this site and i'm still getting the hang of it.  Two weeks ago my husband was diagnosed with colon cancer.  Hes 35.  At first they thought it was just a tumor in his colon and we had surgery scheduled for Tuesday.  Last Friday we had a PET scan and we got a call from the doctor shortly after we got home,  They found cancer in his lymph nodes, and spleen, and he said he thinks there may be some bones involved.  Surgery is cancelled and we have to meet with a new doctor on Monday to come up with a new plan.  Its stage 4.  Its overwhelming me right now,  We have two boys ages 3 and 7months,  I'm terrified to the point that I'm shaking all the time,  I know that I need to be strong for everyone but I'm having a difficult time pulling it together,  I'm just wondering if anyone has any advice on what are the questions I need to be asking the oncologist on monday?  I want to make sure we get the best treatment and are doing all the right things.  Thank you

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi and welcome. I really don't know what to say. 35 is so young. You must feel so overwhelmed. My husband was diagnosed with stage four two years ago. He is currently on chemo and hoping for surgery. Despite being on chemo, he lives a full and active life.

My advice would be to take each day as it comes. Just get through each day. Don't look too far ahead. Accept lots of help from family and friends. Don't try and do it all yourself. I would recommend you go to a large cancer center, if possible. MD Anderson, Cancer Treatment Centers of America, Sloan/Ketterling etc.... Find the best oncologist and surgeons possible. As for the bones, you may want a biopsy. Jen2012, I'm sure will tell you about that. Sometimes bones look suspicious for cancerous lesions but often it's due to injuries etc. Pet scans aren't perfect. They often pick up on things that turn out to be nothing.

You will get a lot of good advice here. Many folks have been living with stage four cancer for years.

Chelsea

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

Sorry you have to be here! But welcome to the best “help” facility around.

 

Your decision to get another opinion is well founded. But you should get another opinion (or more), from colorectal surgeons, not oncologists. There are a world of new surgical technology that many physicians are not aware of, so the more opinions you can get, the better off you’ll be.

 

Do make sure that each opinion comes from surgeons and/or physicians that are not of the same group or organization as one another. Travel if you must to avoid the local fraternity that may stifle objectivity.

 

You have time to get those other opinions, so do not feel there’s a need to be in a big rush. PET scans are often misleading, so don’t put too much worry into them. They were originally designed for a surgeon’s use, not to explore one’s body to locate more cancer. Unfortunately, they seem to have become part of an oncologist’s treasure hunt. Many colorectal surgeons do not recommend PET scans, unless they can make use of the definition of the scan more than they can of standard CT or MRI.

 

Being stage four isn’t the end of the world. I have been around since 2006. I was originally diagnosed as a stage 3c by the radiologist and oncologist, pending the surgeon’s report; the surgeons involved determined I was a stage four. That, was in 2006.

 

So relax and get as many opinions as you can. If you’re close to a Sloan-Kettering facility, go there. They have been doing well with many of the newer treatments, including the addition of Traditional Chinese Medicine to their standard treatment regime.

 

Above all, do not allow fear to guide you. Allow your spouse’s basic instincts for survival; his intuition (as well as yours), to guide you. Each of us has that basic ability to survive. It’s when we refuse to listen, that we run into trouble.

 

My best hopes for you both!

 

John

 

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi. welcome to the group.

I'm a patient (also Stage IV) and not a caregiver.  This is all happening so fast. I totally understand.  You both will have a lot to absorb.

You might need to shop around for second opinions.  Find a doctor who will spend time with you explaining the nature of his disease, his prognosis, and the best treatment.  Make sure you have a doctor who is thorough and tests for everything possible. Certain tumors have mutations which affect treatment - KRAS is important to test for.  Nurses are good too.  The doctor has the ultimate say, but often it's the nurses who spend time explaining the details to patients and answering questions. A good oncology nurse is a plus. I'd recommend making sure that your doctor's practice has an open line of communication, whether that is to the doctor directly or to the oncology nurse.  I can email my nurse anytime and she responds within a day or less - this is reassuring. She's awesome. 

Your husband will have to decide how he wants to balance quality of life with treatment.  That's important to factor in, too. We all want to do what we can to live, of course.  

good luck - 

Karin

 

Cathleen Mary
Posts: 827
Joined: May 2011

 

I am sure that being on this site was not in your plans.   Welcome to a safe place of support and understanding. I am sorry that your young family has to cope with all this.  Many, who are stage 4,  will be able to offer more concrete help than I can. I do want you to know  that this is a good place to come. 

My best advice is to take the time and energy at the beginning to choose, very carefully, the team and medical ceniter who will care for your husband. An oncologist who you can trust,  feel comfortable with; one who welcomes your questions, challenges, and fears... with skill, compassion, and time, is, in my experience, essential. 

In the best of circumstances, a diagnosis of cancer is overwhelming. Take care of yourself. Accept help. 

Know that a lot of people here will care for you. 

My support and prayer,

Cathleen Mary

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

I am a recent entrant to this community as well, both this forum as well as the broader community who have a loved one with colon cancer. For me, it's my mom. She is 57, and I'm 28. She's also stage IV, but her mets are in her liver and lungs. She's in a lot of pain, but we are hoping that she will be able to get surgery soon to alleviate a lot of that.

The big stamp of stage IV cancer is pretty terrifying all by itself, but seeing your loved one in pain is one of the hardest parts. Do you know what region of the colon the tumor is in? How large is it? My mom went through a pretty aggressive regimen of simultaneous chemo and radiation for about 6 weeks, and that seems to have helped a lot. You should ask the doctor about your husband's CEA level. This is an important cancer marker in the blood (it's an antigen) and since your husband's cancer has spread, it may initially be pretty high. My mom had a CEA of 2600 back in February, but after her treatments it's down to 200. Still bad and a problem, of course, but a MASSIVE improvement, it really shows that the treatments worked a lot to shrink the tumors. We'll know more about that (which ones and how much) after she goes for a cat scan on Monday.

Your questions would depend most on what your husband's physical symptoms are right now. Is he in pain? Does he have diarrhea or blood with his bowel movements? How often does he go to the bathroom? The doctors can tell you the right foods as well as prescribe the appropriate levels of painkillers based on his current pain levels. Is he able to eat? Keeping hydrated and making sure his salt levels remain healthy (potassium and sodium) is crucial. My mom's got pretty low in the beginning, and that was a brief scary period.

If you are comfortable sharing, what city/state do you live in? We are fortunate because my parents live in New York, so there are a number of excellent cancer care centers here. My mom has really been sticking to one, though I'm trying to encourage her to get second opinions. That's a really important element of getting the best possible care. If the doctors your husband sees make suggestions or give opinions that you're not happy with, seeing another doctor can be helpful. I'm not sure how to advise you on the tumors for where his cancer has spread, the lymph nodes, spleen and bones, so checking the other discussion forums on this website for those focus areas could be more helpful there.

I really wish the very best for you and your family. There are some surprise success stories out there, and I hope that your husband will prove to be one of them. By coming here, you're already helping him because of all the expertise you'll find (a lot of doctors and people who've studied and read up on the issues, in addition to people like me just learning from experience). You've come to the right place for support and advice, and I hope the information you find here will be helpful for your husband's health and treatment.

adrianchud's picture
adrianchud
Posts: 5
Joined: Apr 2013

First of all I just want to thank everyone.  Your responses are calming my nerves at least for the moment.  

To give a little more info,  his tumor is in the lower part of the colon  originally our surgeon told us that it was in a good spot for removal,  we are currently working with a surgeon who ordered the PET scan after the cat scan showed spots on his spleen and lung.  The lungs turned out to be okay according to the surgeon.  He has now referred us to an oncologist  They are both out of the University of Penn in Philadelphia.  We found them after alot of research on where to go to get the best cancer treatment after our initial biopsy of the tumor came back cancerous. 

So far I really like our surgeon.  He called me yesterday (saturday) just to check in and see how we were holding up after pretty much getting a bomb dropped on us on Friday. i apologize if I sound ignorant but the truth is I am.  I feel like there is so much to learn and I don't know alot of terminology and stuff like that.  Right now I'm very hung up on the Stage 4 thing.  My husband doesn't even know that detail because I asked the doctor what stage it was in private. 

I feel like Jack, thats my husband, isn't understanding how serious this is.  He is a workaholic and hes still very concerned about missing work and things like that.  He just keeps saying that he wants to get whatever treatment he needs and get back to living his life as soon as possible.  I'm not sure how to handle that

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

 

Re:

“Right now I'm very hung up on the Stage 4 thing.  My husband doesn't even know that detail because I asked the doctor what stage it was in private.” 

 

“I feel like Jack, thats my husband, isn't understanding how serious this is.“

 

How can he, when no-one’s telling him?

 

In 2006, I came into the ER and was assigned a surgeon.

 

In 2011 I had some time to locate a surgeon, and did what you did. The surgeon was highly rated, was the chief of staff at the hospital, taught laparoscopic surgery, was experienced with intestinal surgery, etc.

 

That surgeon made the biggest mess of my insides. He left ½ of my small intestines inside to die, rotting away for almost two years…..

 

My third surgeon in 2013 repaired it all, removing the mess and resolving everything that was wrong.

 

Bedside manner or a physician’s web information, or his degrees, do not make him a great physician.

 

Even if you love that surgeon, your husband deserves to have other qualified opinions. Denying him the truth, or the benefit of other surgeons objectivity, is not helping him. As a caregiver, your only job is to keep your patient as informed as you can. His care is his decision to make, and only his. He won’t be able to make an informed decision if he isn’t fully informed.

 

My best to him and you,

 

John

 

jen2012
Posts: 1607
Joined: Aug 2012

I'm sorry about your husband. My husband was diagnosed stage 4 eight months ago. As Chelsea mentioned, he had suspicious spots on his bones, which turned out to be non-cancerous.   He had 2 bone biopsies, one at diagnoses and one a few months later after the 2nd pet scan.   Both negative.   It was a fairly quick procedure and he wasnt in any pain before or after the biopsy.  

Don't hesitate to ask any questions.   There is no way to understand this until you just start reading....reading....reading.   If you can get an email address to his oncologist, or at least the onc's nurse, I've found that very helpful.   His oncologist has been great about answering my many questions.  I can email her anytime and usually get a reply within a day. 

Things will get a little easier.   I know the first 2 or 3 months, I was a mess.   I avoided people as much as possible - probably not smart, but I just couldn't stand answering questions or worse having someone that didn't hear come up to me and ask how everything is - and then either have to lie or tell them.   I couldn't tell anyone without the tears starting....for several months.  I actually had someone come up to me yesterday who had heard and still had to fight back tears, but it has gotten easier. 

My husband is like yours - doesn't want to miss work, doesn't want to think about cancer unless he's at the doctors.   I think it's a good thing.   It's certainly better than sitting around being depressed about it.  

adrianchud's picture
adrianchud
Posts: 5
Joined: Apr 2013

Let me just clarrify a little.  Obv I would never and don't plan on withholding the detail of what stage it is from my husband.  We just found out 2 days ago that it has spread.  Yesterday when the doctor called to check on us my husband was sleeping and I was the only one who talked to him.  Thats when I asked him what stage it was.  Of course, on Monday when we are in front of the oncologist that question will come up and Jack will hear it.  I just see no point in telling him today, Sunday, as we prepare for our sons soccer game.

Thanks again for all the advice it is much appreciated.

Jen, how is your husband dealing with the treatment?  I'm assuming he's still working?

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

right now with your husband's diagnosis and having two young children.  This is understandably very difficult.  

This forum: A great place with strong support and advice. Please ask any and all questions that you may have and someone with experience will provide you kind advice.  We have members who have benefited from both conventional therapies and some with alternative.  You will learn a great deal here and can have a place to safely express your emotions.  

Being a caregiver: I am also a caregiver and my husband is no longer receiving chemotherapy. Do not let this discourage you as my husband's situation is rare.  But even given our situation, my husband who was 68 when diagnosed, has lived over four years since his diagnosis and he was able to work full-time for 3.5 of those years while having chemotherapy. There really is life after a cancer diagnosis and there is also life during treatment. You will see this as time goes on. 

Once treatment begins: What I want to say to encourage you is that I think that you, and your husband, will find the strength you need at the times you need it most. This is the way it has been for my family and others I have spoken to. Right now, you are helpless and everything seems out of control, but once you have a plan in place and treatment begins I think you will feel much better.  

Gather a strong support system for your children: Because you have young children, you will need strong support systems in place to provide child care for you when you need to attend medical appointments with your husband. As many distractions as possible for them may be necessary so that they do not have to deal with the intensity of the emotions until things calm a bit. 

Caretaker/patient differences: Sometimes there is a difference in the way individuals in a couple will process the experience of disease.  One person may want to know everything, read every statistic, and explore treatment options while the other may not even want to talk very much about it.  Your relationship as a couple and your realtionship with the disease will evolve over time. Right now, perhaps just listen to your husband's concerns and find someone else to listen to yours if he is not able to handle it.

Oncology social workers: I do not know if you are at a major cancer center, but inquire if there is an oncology social worker associated with the practice. I think folks wait too long to explore this option.  Having an individual that can counsel and provide support to you as a couple and also individually is essential.  

The picture of your family is lovely.  Please come back to us and, if you feel comfortable, share the results of your meeting with the oncologist on Monday.

Best to you,

Cynthia

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

My wife was diagnosed with colon cancer in a similarly spread situation three years ago. She had metastatic mesenteric fat seeding the peritoneum, lung thingies, massive distant lymph nodes and was obstructing.  Perhaps, even probably, liver mets too.  But there were lots of confusions and varied interests at play.

I was aware of extra "scientific first aid" options for CC since I had lost a parent to colon cancer decades before and had older friends that had exercised part of these regimens for other cancers  too. 

First thing, I had her get on 1600 mg of cimetidine,  17,000 iu vitamin D3,  600 mg coQ10, 400 mcg selenium, B100 complexes, ca 300 mg vitamin B6, nicianamide, 45 mg of menaquinone4 (a special, human K2 in NBI Osteo K), as much vitamin C as she would swallow ca 8-15 grams across the day, 900 mg of lipoic acid, and some other of the LEF recommendations.  4 weeks later she had surgery, the surgeon prescribed Celebrex for 1-2 weeks. Serum blood tests, for vitamin D, hsCRP, CA19-9 and CA72-4 at diagnosis, or before surgery, may be important as the CEA.

We got her surgery on as much as the surgeon could see.  He didn't get all of it by a long shot and was initially worried, but we had stopped the metastatic process with all the extra chemistry and had killed a lot of it before even he operated.    After surgery, she added IV vitamin C every day for three weeks, then tapering down 5, 4, 3, 2 times per week and added more of the LEF recommended ingredients and low dose daily chemo since then  

Hopefully you can find a more aggressive surgeon, all this is important.  My wife is never chemo/cancer sick, feels well and even better than before (no bone pain/back problems anymore), her unresected lesions have shrunk, calcified or disappeared. We got a good first shot in, despite having to overcome over many superstitions and presumed authority.  It can and has been done successfully, and affordably.  Two songs, feelings I have experienced, going over the top as a caregiver.

You are fortunate to even see these options early on when the immunotherapies with cimetidine count much, much more. Most do not until well after. 

 

 

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have come to the right place for support, information, and personal experiences. I was diagnosed in Nov. 20111, with stage IV colon cancer with mets to liver(gone for now!) and lungs. I have been through surgery, chemo, liver resection, SIRT, SRBT radiation, and still on chemo. There have been ups and downs in the past 18 months but I am am still enjoying and apppreciating life. As a mom of 5 and grandma to 3 adorable grandchildren I understand.... Remember children handle things as well as the parents do.....no matter what their age. Try and keep some normalcy, although you now have a new normal. I have 5 children, 15 years apart, so when I was diagnosed my youngest son was a sophomore in HS, and the oldest had just had his third child, last year two graduated from college and my second son got married. Life is good! My advice would be to take things step by step and sometimes they will be baby steps  and at times you may take a step backwards. Keep a notebook with all information. I also put suggestions and information from this board in my notebook that I may want to ask my doctor about. I hope we can help you through this journey....any questions, please feel free to ask....thinking of you and your  precious family. ~Ann

Trubrit's picture
Trubrit
Posts: 4967
Joined: Jan 2013

One of the first things I'll share is get two good notebooks. One for anything and everything that your husband is experiencing. No matter how small or insignificant you think it is, put it in your notebook (You may already be doing this of course)

When I go to my Oncologist I have a list from the top of my head to my tippy toes. Some of it I just breeze through, others I want answers to.  My Oncologist is a good man, and listens and answers all I have to throw at him. 

The second notebook (I have a pretty one), is for my own home use. I take my vitals (Blood pressure, temperature, heart rate, weight) every morning, then I write in it during the day how I feel, BM's, what they look like, how they felt to pass. (nothing gets missed). What's happening to my body on that specific day. Now, I get to look back and see what I was going through during my treatment. I see a pattern now, and that is good. 

We all know what its like to hear the Cancer diagnosis. The fears, the tears, we've all been there and are here for you, as you start on this journey. We're not Doctors or Oncologist, but we're survivors, and have a vast amount of knowledge between us. Some as caregivers like yourself, some as patients and some as both. You'll not find a better set of people to love and support you and your husband. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I agree with Sue about the notebooks.  I'm stage 3 and whenver we visit with the oncologist, I have my list of questions in my notebook.  Also, I have a chemo/food/symptons notebook.  I keep track of what I ate, symptons, constipation, etc. every day for all my treatments.  Usually after day 7 of my treatments, I'm feeling normal, eating normal and the only thing I write in those days is "constipation"!  Worst part of the chemo but not eveyone experiences that.  Your husband is so young and I hate to hear you are going thru this.  I have a friend who's husband had stage 4 colon cancer twice and he beat it both times and is doing great.  The main thing is to never give up!  Hugs and prayers to you.

 

Annabelle41415's picture
Annabelle41415
Posts: 6310
Joined: Feb 2009

Welcome to the boards.  So glad that you found us because you will find a wealth of information and a bunch of caring people here.  It's always good to get a second opinion, if not a third.  You are always welcome to post any question you have, believe me, we have covered them all.  You will go through a rollercoaster of emotions, tests, prods and pokes but always remember here you won't get any of that, just the best answers we can give you and a ton of understanding.  If your husband has any questions, he may want to ask also.  Let us know how the both of you are doing.

Kim

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

on this journey but glad you found this great board. You will find much of wisdom and support here as I did when my husband was diagnosed stage 4 (mets to liver) back in Nov 2011, aged 43 then. I remember this terrible first weeks when we we were overwhelmed by all this new bad news and this strange medical stuff. It's totally ok to be scared and to tremble. It takes some time to adjust and (I didn't believe it but it's true) it will get easier after some time. Take one day at a time, get informed and ask all questions you have in mind - aks the doctors, ask us. And if you are not sure with your husbands doctors go for a second or even third opinion. And try not to think too far ahead that only makes your head swirl and does not really help.

A hug from Cologne, Germany

Petra

 

 

 

jen2012
Posts: 1607
Joined: Aug 2012

Hi Adrian,

Yes, he continued to work through treatment.  He went for chemo every other friday - August - March.   He's on break now as he waits for surgery.  On his chemo weeks, he'd leave work around 4 on thursday for blood work, then take friday off for the treatment - since it was such a long day!   He did pretty well through chemo - a bit tired and the neuropathy got worse as time went on and that's his biggest complaint now.  But he did okay and is happy to deal with the neuropathy if it means no cancer.   Feel free to send me a message if you ever want to have a non-public rant.  I know how overwhelming things are.  It's good that you have the kids to distract you from some of it, at the same time it's so hard because you are on edge and they demand so much of your time and attention.  Life sure can change quickly huh?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Just wondering if they have your husband on this, Jen?  It's supposed to really help with neuropathy.  It was standard tx at my cancer clinic when you did chemo, but I think it can also help after you finish tx.  AA

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Just wondering if they have your husband on this, Jen?  It's supposed to really help with neuropathy.  It was standard tx at my cancer clinic when you did chemo, but I think it can also help after you finish tx.  AA

 

jen2012
Posts: 1607
Joined: Aug 2012

Nope Ann...they havent mentioned this. I actually just emailed the onc today to see what she could give him for it....i will ask about the glutamine. Thanks!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

so I will just add my welcome.  This may be the most difficult challenge you and your DH will ever have to face.  It certainly was for me, and for my husband as my caregiver.  Having children still at home (we have three) just makes things that much more complicated.  A cancer diagnosis is terrifying and overwhelming, but as difficult as it may be to believe, things will start to improve.  The first few weeks are by far the worst of the journey, imo...after you get a plan in place, and start working on getting back to good health, most people start to feel better (at least emotionally).  Please feel free to ask us any questions, and tell your DH that we are here for both of you.  Sending hugs and strength your way~Ann Alexandria

PS There are a fair number of people on this forum with stage 4 cancer who are still going strong.  I myself have been in remission for 15 months, after having three recurrences and considerable spreading of the cancer.  So don't lose hope!

mbeaulieu's picture
mbeaulieu
Posts: 16
Joined: Mar 2013

I am also new here to the site as my mom was diagnosed with stage 4 colon cancer in Feb 2013.  I know the feeling of that initial shock.  The first thing the surgeon told me when they believed it was stage 4 colon cancer (this is before we knew for sure) is to take things one day at a time, and this has been working for me.

My mom is only 56 (not quite as long as your husband but young at heart!! lol) and is my best friend, so I completely understand what you are feeling right now.

 

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

Welcome to the forum!   We are sending our thoughts and prayers for you to be able to find a good solution for your husband.

 

There are a lot of people with a lot of various cancers.  When you have questions, probably several people have been down the road before.  We are all afraid of the unkown.  So, when people can share their experiences, it takes a lot of the unkown away.

 

My advice for all new to cancer.  Nutrition and hydration are your worst enemies. They complicate the adverse reactions to chemo. I did not believe it enough when I started my cancer journey. I am now an advocate for great nutrition. and keeping hydrated.   Juicing adds micro and macro nutrients that one can not get from a pill. Plus it tastes great also!   Whole foods and no more chemicals.  No box, frozen meals, fast foods, these are adding to the issues. We were fast food for lunch and occasional boxed food for dinner.  When we stopped our health came back.  We both lost weight and feel better.  I am in better shape now then when I started my cancer journey. Take it seriously.

 

Best Always,  mike

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