brother just diagnosed T4N2Mx (3C)

[scaredtigger]

Hi everyone,
I've been reading for a couple of weeks but thought that I'd post tonight.
My brother (46) has been diagnosed as T4N2mx with extramural venous invasion, lymphatic space invasion, perineural invasion, lymph nodes (4/11) with evidence that other nodes have been totally effaced by the cancer, local extranodal metastases (multiple), resection margin = negative. lymphocytic = negative

From what I have read, this is not a great report. Yet on Thursday his oncologist who is a professor at a Melbourne (australia) hospital said that this is an early stage tumour and that there is nothing to worry about.

He said that there may be some cancer seeds still floating around but the chemo will kill them.
On his cat scan there was also this wording "borderline midabdominal para aortic lymphadenopathy equivocal for metastatic disease.
My brother hasn't asked any questions but he also hasn't been told anything.

Does anyone else agree that this early and nothing to worry about? Or am I right in thinking that this is pretty serious?
Thanks

[scaredtigger]

I'm a bit sad that no one replied! Never mind I'll keep looking!

Good luck everyone xoxoxoxox

[curious56]

Serious? Yeah. A death sentence? Not necessarily. Go to this website and enter his info:

http://nomograms.mskcc.org/Colorectal/PostSurgery.aspx

There are TWO nomograms here -- one for "cure" rate/% (NED -- no evidence of disease) at 5 years and 10 years -- the other for survival rate/%. I'd do BOTH of them. I suspect the numbers won't be as bad as what you've built up in your head.

I don't know that I would call this "early" or that there is NOTHING to worry about. Attitude is a LOT in cancer, IMHO. I suspect your brother's doc wants him to stay optimistic -- better for him, his body, and the treatment chances. The LESS worrying your brother does, the better! Stress isn't good for ANY disorder/disease.

As to the report specifics you posted, I'm in WAY over my head.....not a medical person. I'm sure someone will come along to "translate".

[1YEAR]

Here's a thought re drs comment on "early stage tumor". Cells are classified as well, moderate and poorly differentiated. Poorly being furthest from normal. So maybe the cell structure of the tumors are well differentiated and that's why the dr thinks it has been found early irregardless of lymph involvement?
Just a thought worth asking the dr.

[jjlist]

we are not Drs and to second guess or diagnose each other is not what to expect from CC. we can only relay personal experiences and histories to each other. every individual's case has to be treated separately. its disingenuous to start comparing and/or expecting similar results.
But
I think its safe to say ANY cancer diagnosis with nodal involvement should be taken seriously. If the oncologist is going forward with chemo therapy , that is a serious decision is well. Worry and stress are going to be unavoidable, so your brother and everyone else need to recognize that and keep it to a minimum and to stay positive and fight back.

[Cb75]

I read your post earlier but really didn't know what to say. After reading it agin I decided to chyme in. My first thoughts are that your brother is dealing with a cancer diagnosis. This isn't a cold or flu, it's cancer. Cancer brings with it many months (sometimes years) of medical treatments including scans, chemo (for most), subsequents scans,visits to multiple doctors and the lifelong fear of living with the knowledge that you have cancer and everything that means. However, it isn't necessarily a death sentence. I was diagnosed with stage iv. I was lucky to have all visable cancer removed from my body by surgery and then did 12 rounds of chemo. At this point I am doing well so far, but that can change quite quickly. My advice to anyone with this disease or affected by it in some way is to be cautiously optimistic. No one knows the progression cancer will take. It is a highly individual disease, regardless of what the pathology finds. The statistics give you the odds based on a group of people, it does not take into consideration the individuals unique circumstances. With respect to your brothers doctor, I would have a lot of questions and be suspicious of his 'nothing to worry about' attitude.

[hddad228]

i hate to step on your thread, but i was DX in April 2013, had the resection on May 16th, clear PET scan on July 8th, port placed on July 17th, start on the "juice" sometime next week, i had 2 stage 3B tumors and 4 of 15 nodes affected, i really don't know what to think, but i am thinking positive, i am most afraid of the side affects, or lack of knowing how it will affect my quality of life? will i be able to ride my Harley? will i want to wrench on my hot rod? and i really don't understand all this stuff my onc is telling me. but hey it is only for 6 months and it is more like an inconvenience than anything "i hope", sounds like allot of people have it way worse than i do,

[Bev G]

Hi scaredtigger,

And on another point you made (wondering if I'm atypically cranky today??!!?) with regard to you being upset that no one immediately responded? You posted quite early on a Saturday morning, waited a few hours, then were disappointed? Hey! Give us a chance to get up and drink some (or a lot) of coffee before you give up on us, OK? Believe, we pretty much all know how scary a new diagnosis is. And, you will find lots and lots of us here who want to support and encourage you. Just don't be surprised if you have to wait for a few hours, maybe even a day for someone to respond. It's NOT a reflection on you or your question, promise!

I'm also a member of the lymphoma support group (I have stage IV colon, my husband has stage IV lymphoma) Heck, sometimes I post a question there and NO ONE ever answers! (They suck!)

Best to you, glad you're here (sorry you had to be, though!)

Bev

[Choijk]

Scaredtigger, I'm also a family member- mom was diagnosed with colon cancer in may 2013 during a routine colonoscopy. I am new to all this so I don't have any words of wisdom to share but I can relate to how you may be feeling right now. This forum is wonderful and there a lot of knowledgable members. I hope they can guide you and provide better insight. And like bev said, sometimes it just takes awhile before there is a response. But in the event of a lack of response, it doesn't mean that you're being ignored. For me, I just don't know what to say. Welcome and hope you find strength and support from this forum.

[raym]

The only thing I have to add is the statement that the chemo WILL kill the cancer cells floating around. That is the goal, to eliminate the cells but to say it WILL kill them is a little misleading. Chemo is a bit of a shotgun treatment, hoping to kill rapidly diving cells, but it's not 100%. That's the hope that mop-up chemo will well..mop things up. Not trying to be a doom bringer, but just wanted to add that during and after chemo your brother will need to be checked (blood markers and CT scans) for any cancer popping up. There are many people that have surgery and chemo and are fine after regardless of initial staging.

[scaredtigger]

Hi everyone and thank you so much for your replies.
I thought that I posted a reply about an hour ago but is hasn't appeared so I'll try again.

Oh I realise that I jumped the gun with expecting replies so soon. when I posted it was Saturday evening (here) and I was just expecting a bit much. Sorry about that
As Bev said not every post will get a reply either.

Anyway the reason that I decided to post is because after reading here for the last couple of months, I know how caring and supportive you all are and I really appreciate each of your replies .

Thanks curious for the nomogram info. It's a bit confronting but as you said it wasn't quite as bad as I thought it might be.
1YEAR, his tumour is moderately differentiated which I understand is better than poorly differentiated so that is some good news.
Thanks for your post cb75, fingers crossed that you stay clear.
Good luck hddad228. You were diagnosed a month before my brother. Hope you both have a great outcome
Thanks choijk. I wish your mum all the best and I know how scared you must be.
Thanks raym that makes sense and it must so scary getting rechecked.
Thanks jjlist my brother has a great attitude and is very positive that he will beat this. He is eating well and keeping healthy and trying not to worry (easier said than done I know).

Well I'm glad that I found you but yes, I wish wasn't here!
And I will be a bit more patient too
Thanks again guys
ps I don't know how I did it but I was originally scaredtigger but I am now bigtigger???

[PainInTheAss]

I think your doctor's response was more of a "bedside manner" issue.

Some docs are a little too "PollyAnna." My first doc (surgeon) made it sound like I would just get surgery and be cured (after the chemoradiation). Well, I got on here and found other Rectal IIIcs who had chemoradiation and surgery and still had the cancer spread.

Other docs are very blunt and do not word things very carefully. My Rad onc said "5 year survival stats" after saying "50/50" which made it sound like 50 percent of people died in 5 years! I had to do some research to find out that the correct term is "Disease free 5 year survival stats." I don't know why they even include the term "survival" because the numbers would be skewed if they only included the living (right? wouldn't you want them to include the 10 people that died in that 200 person 5 year study!!?).

It helps to ask a lot of questions. My hem onc spent almost an hour with me answering my many questions and really "cleared the air" (I was the last appointment of the day). He was not too optimistic but still very positive and very helpful. Knowing the truth, for me, is much more important than just "feeling good." I fear the unknown much more than I fear bad news. So, letting your doc know you and your loved one are "tough" and you won't fall apart in the face of reality will help your doc be honest with you. I think we all hate feeling we are being lied too, but I do understand that a doc doesn't want to spend all day watching people cry. I haven't cried at any of my appointments. I wait until I am in the car and alone. They have a tough job dealing with people's lives hanging in the balance all day. I do understand that.

[mstults]

I'm not advocating that he not listen to his doctor at all but it is imperative that he remain proactive. If his doctor is of the mind that once he's cancer free then it's over and no need for follow up then he desperately needs a second opinion. So many people have had their lives cut unreasonably short due to not following up. I think many here will agree. Especially if he's younger he may need lifetime follow ups.

[disco nap]

If it makes you feel any better, that Dx is really, really close to what mine was and I just passed the three year "clean" mark, and I'm in perfect health.

(And, to answer your question, that Dx is NOT nothing to worry about, but there is a lot of hope!)