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Pathology Report - Deciding on Chemo or No Chemo

So Worried
Posts: 111
Joined: Aug 2012

Hello everyone,

I am brand new here and so scared and worried about my husband who was diagnosed with colon cancer on June 25th. He had surgery, a resection on July 6th. The oncologist has strongly recommended chemo, Folfox6. My husband was diagnosed with Stage 2a. The tumor was T3, but the surgeon said it was T4 clinically. The surgeon also said the tumor was sticky, ad kind of stuck in there..whatever that means!! My husband is 50/50 on chemo. He does not talk about it too much, (he is the quiet type anyway), but today he did say this:
I do not really want to do the chemo, and if it comes back then, I will do chemo and surgery or whatever it takes, but I wonder if at that point it's curable? I said I don't know and nobody knows, each cancer case is totally different. So I guess he was wondering like if it did come back in the liver or wherever and he did surgery and chemo, if it could possibly be gone for ever....or is there absolutely no possibility and it would come back for sure? He asked me (cuz he knows I am on the internet every night, all night if I know of any cases/people who had good outcome with this sort of decision) Anyway, here is the pathology report. I thought if anyone would like to read it and give their input, that would be great. I have been reading the posts here tonight and it seems like there are a lot of knowledgeable people here. And..by the way...I hope and pray you all get better QUICK. Thank you so much. Just a wife who is stresed and worried and scared. PS..I also know it's his decision and he has to live with it...just wondered if there is anyone here knowledgeable in these sorts of reports.

Diagnosis:
Right Colon
a. Adenocarcinolma, intermediate differentiation
b. 26 lymph nodes negative for tumor

Specimen: Right Colon
Other organs received : None
Procedure: Right hemcolectomy
Tumor site: cecum
Tumor size: 1.5 cm
Macroscopic tumor perforation: Present
Histologic type: Adenocarcinoma
Histologic grade: Low Grade (G2)
Microscopic tumor extension: Tumor penetrates to pericolonic adipose

Margins:
Proximal: Univolved
Distal: Uninvolved
Mesenteric: (radial for rectal cancers) Uninvolved
Treatment effect: No prior treatment
Lymph-vascular invastion: Absent
Perineural invasion: Not identified
Tumor deposits (discontinuous extramural extension): absent

Histologic Features Suggestive of Microsatellite Instability: None
GROSS DESCRIPTION:
The specimen in formalin in a container labeled with the patient’s name and portion right colon. The specimen consists of a 15 cm length of colon which has been opened longitudinally. 3 cm from one margin there is a retracted, somewhat crateriform lesion measuring 1.5 cm in greatest dimension. The remainder of the bowel mucosa appears unremarkable. The pericolonic fat is stripped. In the region subjacent to the craterform lesion there is retraction and degeneration of the serosal tissues with an area of gross perforation. The pericolonic fat is stripped and submitted for lymph node clearing. While doing this, three tan structures suspicious for lymph nodes are identified, averaging 0.5 cm. The crateriform lesion is seen to encircle the entire circumference of the bowel with thickening of the wall and muscular hypertrophy. Sections of adjacent margin are submitted in 1a, the opposite margin in 1b. Section of tumor with area of perforation is submitted in 1c with additional sections of tumor in 1d and 1e. Sections of grossly identified lymph nodes are submitted in 1f. Representative sections of the otherwise unremarkable colonic mucosa inn 1g. RS IN 1A through 1G with additional tissues for lymph node clearing.
(it then went on to tell which lymph nodes were submitted in which containers/labels)
Then this:
MICROSCOBIC DESCRIPTION:
The tumor is of glandular origin with features of intermediate differentiation and invades the colonic wall with involvement of the innermost serosal fat. All lymph nodes are negative for metastatic tumor. The proximal and distal margins are uninvolved.

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

So sorry that you needed to find us, but you have found a good place to be and to ask questions. You are right, many are very knowledgeable about this disease as they are survivors or caregivers of survivors.

I read the report, but am by no means knowledgeable about the details. What did strike me as good is the fact that the margins appear clear and that he has no lymph node involvement or metasticis to other organs.

To do or not to do chemo is definately a personal choice to be discussed with his onc. What they appear to be recommending is what some here call "mop up chemo", just in case there are some stray cells.

You indicate your husband is 50/50 on the subject. Perhaps a discussion with the onc. about his concerns and gets full details from the onc. on recommended treatment plan (side effects and all) it will help him make up his mind.

Unfortunately there are no guarantees with treatments. It might be that without chemo he could never have a recurrance but there is also the possibility that even with chemo he will have a recurrance. No one can be absolutely sure which way things will go. Since that is the case, it is my opinion, that you and hubby need to get as much info as you can from onc and then weigh it against your hubby's concerns.

As you said, the final decision is your hubby's. Just remember that neither of you should second guess an informed decision made now if unforeseen things happen in the future.

Best of luck to you both. I know you are worried and scared. Life changes for patient and loved ones in an instant when you are diagnosed with cancer. Just remember, there are folks here who will gladly try to help you and hubby along the way.

Hugs,

Marie who loves kitties

peterz54's picture
peterz54
Posts: 230
Joined: Feb 2012

stage 2a five year survival is not bad, greater than 60% I believe. but your husband could greatly reduce that if he doesn't do chemo.

see NCCN guidelines
section 7 in particular and page 49 on therapy for T3 & T4. chemo is recommended for T4
The NCCN guide is based on the informed concensus of many professional oncologists, so it gives you something to compare your doctor's advice to and will educate you on standard practice.

NCCN guide

also, make lifestyle changes....studies indicate that people who shift to more of a plant based diet and moderate exercise have much better survival rates...

he can beat this

John23
Posts: 1832
Joined: Jan 2007

Re:

"definitely do chemo"

Seriously, how about: "definitely do research before you do anything" ?

Worthwhile reading, even if only for the quotes of physicians:
On Conventional Cancer Treatment

Better health takes time and work, but you don't kill cancer by killing 1/2 your body.

And you're right! He could beat this!

John

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005


"also, make lifestyle changes....studies indicate that people who shift to more of a plant based diet and moderate exercise have much better survival rates...


~JFC

peterz54's picture
peterz54
Posts: 230
Joined: Feb 2012

it's no secret conventional treatment is lacking, but can you conjur up research to override the NCCN guidelines for Stage II T4, which by the way, is based on research and consensus opinion? not your opinion , or mine, on one oncologists, but many researchers and many oncologists. Doing one's homework has always been my advice.

I am also an advocate for doing other things, but only those things for which there exists some level of evidence. choices should be informed. we don't have time to run down rabbit holes willy nilly just because 15 people offer up 15 different unsupported opinions.

steved
Posts: 836
Joined: Apr 2004

Reading the report there are many positive aspects- the clear margins and negative nodes being the most important as they got all the visible cancer and the edges of the extra bowel they took are clean. The most concerning part is the fact the cancer had grown through the wall of teh bowel into the layer of fat that sits around the bowel. The description of it being stuck/ sticky is the surgeon saying it was hard to cut away and the surrounding tissues were inflammed due to the cancer. In that situation there is more concern that single cells cn be left behind that could lead to recurrence.

The risk of recurrence is less than 50% but it is still significant and chemo does reduce that risk. It aims to kill off any residual cells before they develop into a visible and problematic cancer. If it recurs then the prognosis is significantly worse and if it spread on its recurrence the prognosis is generally poor (though even stage 4 cancer can be cured but the likelihood is low).

Having chemo now is an investment in reducing future risks. It is however also a serious commitment and not a walk in the park so it is a decision not to be taken lightly. However, thethings you do now are the things that will most help your future- trying to deal with a recurrence is much harder than dealing with chemo now (believe me as I am dealing with a recurrence and it sucks!)

If you wan tadvise on waht chemo is like do ask- or he can PM one of us. Try to get a sense of what his worries are about chemo as everyone here has been through some chemo and there is lots of advise around. ultimately though it is his decision and it is the right one no matter what he decides.

Steve

John23
Posts: 1832
Joined: Jan 2007

You have a right to be worried. Stage one or two isn't any
better than stage four.

The biggest problem with all "remedies", is the simple fact that
none address single cancer cells. While our immune system is
best for taking care of individual cells, there simply hasn't been
much research to help our immune system do it's job better.

Chemical therapy (chemo) was designed to take down tumors,
not individual cells, and it does a very poor job (if any at all), at
targeting individual cancer cells. That is why the success rate
for chemical therapy and radiation is as poor as it is. Many top
oncologists are speaking out against the industry's lack of
progress with cancer, and rightfully so! The statistics haven't
changed appreciably in many, many years.

Surgery has come a long way, and there are other options
such as radio ablation, freezing tumors, etc, but all still have
their limitations.

Your husband should have the last say, and both he and you
should not allow fear of cancer or dying lead you into any
direction. He should allow his instincts for self-survival to
lead his way, and you can help him by doing as much research
as you can, to help provide the answers he might be looking for.

There are also "alternatives" to look into, and many here have
used them with great success, so don't allow yourself (or him)
to be persuaded that there is only one way to fight cancer!

You can click on other user's names and read their "profile page"
to see what they've gone through. It can be of benefit, since you
can get a better idea of how things really are, rather than someone
giving you a second-hand opinion.

The question of: "to chemo, or not to chemo" isn't asked as much
as it should be. Ask the oncologist and read about the "side effects"
of the toxic chemicals used, then weigh it against the benefits that
may or may not be had. Pumping toxic chemicals into one's body,
or being bombarded with radiation, should not be taken as lightly as it is.

There are choices to be made, so take the time to study each one,
and do not rush into anything.

He'll do fine, but he has to be happy with his decisions.

Best hopes for great health,

John

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

"Stage one or two isn't any better than stage four."

speechless...

jomar
Posts: 11
Joined: May 2011

I'm not sure about statistics. Seeing how most people take their doctors advice, how then can we get true statistics. No one asked me if I wanted to be in a group of those who had surgery and those that didn't. I also believe people should have a lot more counceling before makeing these tough decisions...jomar

luvinlife2
Posts: 172
Joined: Jul 2012

Speaking from a Stage IV perspective, I'd GLADLY take a stage 1,2 or 3 ANY DAY, ANY WAY!!!

A seven letter word separates Stage IV's from the rest...CURABLE. I'd give my left leg, arm eye whatever for a chance at that. I really doubt any Stage 1,2 or 3's would do the same to be a 4.

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Just throwing this out there. I had a rectal polyp removed about 14 years ago. I thought it was a hemroid. The doc sent it to the lab and it came back with something like a trace of cancer - I can't remember all the details. Anyway, the surgeon removed more of the area (safe margin) and I met with an onc who said she wouldn't recommend doing anything more. I was happy with that. Last year I was dx stage 4 colon cancer. I've had colonoscopies and many scans. No evidence of disease in my colon but somehow I have stage 4 colon cancer. Maybe your husband can get a CEA blood test and a circulating tumor cell blood test. That might help him make his decision. My case 14 years ago is nothing compared to your husbands now. I would not have opted for chemo back then because my docs didn't seem too concerned. I wish you and your husband the best on your journey.

So Worried
Posts: 111
Joined: Aug 2012

I am so sorry about your returning cancer to your colon. Boy, that is so disgusting. You had a long time in between, a person would think they were all through. Boy, I can tell you I hate cancer more and more everyday!!! I just feel like screaming...I am so sorry!

abackhou
Posts: 77
Joined: Jan 2012

If it was me, what I know now I would probably go all out for the chemo treatment if my oncologist recommended it.

Best Wishes….Andrew

steved
Posts: 836
Joined: Apr 2004

Some great coments above and all very valid. One huge strengtho f this board is the diversity of approaches and experiences and in general tehre is a lot of respect for people making the decisions that are right for them.

The only thing I would personally disagree above is JOhn's comment that stage 4 is not worse than stage 1 or 2. I understand his point that now you are trying to deal with any 'micrometastases' (tiny bits of tumour left behind that have the potential to grow into problematic tumours) the evidence around chemo and radiotherapy is a bit mixed but according to all the stats (which have some value but aren't perfect) stage 2 does on average have a better outcome than stage 4- more people will live for 5 years without a recurrence and more people will never have a recurrence from stage 2 than stage 4. They are different beast (says some one who has been stage 2, 3 and 4!) John may disagree but it is important you hear the range of views here.

Ulitmately it remains your husband decision and as I said- what ever he decides is the right thing.

steve

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Personally I would give the chemo a try. I am a IIIb with signet ring adenocarcinoma...my cancer is rare and very agressive. From what i understand your husband's cancer is not as agressive...but still something that needs to be dealt with. The long list of potential side effects can be overwhelming...but many of them are manageable. I am on FOLFOX ... 12 treatments... my first infusion was harder than my second. From my first treatment i experienced fatiguev(slept for several days), diarrea, mouth sores, loss of appetite, and a little vomitting. The oncology nurses helped me manage my symptoms... they advised me to get rest when i feel tired, i took immodium for the diarrea, and they prescribed magic mouthwash that cleared up the mouth issues which brought back my appetite. My second infusion was much easier...i just had a little diarrea and the mouth sores...both of which cleared up quickly. I go in for my 3rd infusion next Tuesday...i can do this. My attitude is that i need to fight this as aggressively as possible. I am going to have to also consult a specialist for my cancer for further treatment...we are talkijg about possibly a cytoreductive surgery and HIPEC...both very aggressive treatments. I will do whatever i have to to fight this...i am only 45 and i have 2 young children that i need to see grow up...my husband is very supportive of ky decision to go through the chemo and to seek the treatment of the specialist. I wish you both well in whatever you decide...just try to let him know that he can do this if he decides to go the route of chemo...many of us here have done it.

Alex

John23
Posts: 1832
Joined: Jan 2007

Just to clarify what I said above.....

Your husband (and you) should take the time to explore -all-
options, including the types of chemo, radiation and surgery
possible, and not simply accept one Oncologist's or surgeon's
opinion! You should get other opinions from qualified colorectal
surgeons and oncologists that are not of the same group or
association as your present ones.

There have been a lot of new developments with surgical techniques
and procedures, where a tumor can now be removed or shrunk
using other than the older chemical or radiation procedures.

Those options are well well worth exploring!

So far (in "real life"), I have lost more friends to stage one and two
cancer, than stage three or four. My brother-in-law passed on
the 14th after stage one pancreatic cancer. He had been diagnosed
less than a year ago.

The high incidence may be due to the lack of ability to isolate single
cancer cells, allowing them to go undetected since they were not
noticed after the original diagnosis. Let's face it, having stage one
or two manages to afford a sense of complacency; a feeling that
nothing is there to worry about, where stages three and four give
almost continual concern and we always seem to be looking for that
"other shoe" to drop.

You have reason to worry, but not to panic. There are some very good
options available, both western medicine variety and alternatives. And,
there is no need to choose one or the other of modalities; many here
use both or all. Anything that may give us a better chance, is worth
looking into; we should leave no rock unturned!

Get other opinions from both oncologists and colorectal surgeons,
and explore everything in detail. You both have the time to do that,
so don't wait until you might not!

There are no forms of cancer that should be taken lightly; there is
no "stage" that offers more advantage than the other. Staging only
sets the accepted direction of care, and it isn't always correct.

Be well, I'm counting on you!

John

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

I met a woman the other night who is 78 and was recently diagnosed with Stage II Colon Cancer. There are very big differences as far as the Stages of Colon Cancer go (like with most cancers) and the effectiveness of treatments vary from person to person, case to case. Her current Oncologist explained that her information showed that 28% of the study group of patients with Stage II who did nothing other than surgery had no recurrence while 24% of those at the same Stage who did the chemo (she wasn't sure which chemo was suggested) had no recurrence. These are just numbers and we are people, not numbers, but there didn't seem to be much of a difference.

Her concern, and would be mine too, was quality of life issues.
She is going to get a second opinion.
I also suggested into looking at dietary changes.

She had her staples taken out the day before and it was only two weeks since they removed a foot of her colon. Prior to her dx she had no health issues. She wasn't on meds for anything. I was truely amazed at how great she looked.

So we're all different and have to make our own decisions based on the info that we have.
I'm sure he'll make what is the right decision for him...
-phil
One thing I've found to be the MOST important factor in how a person does is to have a good, competent medical team. Mistakes are not a good thing

So Worried
Posts: 111
Joined: Aug 2012

I would love to thank everyone so much for their input.
I did notice the one post who said the cancer was stuck because it went through the wall into the tissue and that it why they are saying it was sticky. Thank you for that, as they seemed to not really want to say that much, but looking at the report, I guess it does say that. (sigh) We are getting a 2nd opinion next week, mostly because of the treatment the onc is choosing, Folfox 6, whereas I think the pill would be fine. (i am hoping anyway)

Ummm, as for one of the other posts, saying stage 2 is no better than stage 3 or 4 -
I find that statement incorrect as stage 2 includes just the spot where the tumor was found.
Stage 3 includes lymph nodes and Stage 4 includes another organ if I remember correctly.

So therefore Stage 2 is not as bad as 3 or 4 :) I DO know that much.

Actually they say that sometimes stage 3 and 4 could possibly have better outcomes because those people always do chemo whereas stage 2's do not always do chemo, so therefore statistics sometimes show a stage 3 could do better than a 2, because of this.

Anyway, thank you again so much everyone. I just like to get everyones opinion because you are all so educated in all of this. I wish every single one of you super recoveries and I am praying for you all.

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

Since there is no Stage V. That may be the ONLY thing agreed upon but I wouldn't even bet on that! One thing you'll find plenty of on here are plenty of opinions. Not always plenty of facts, but always many opinions. At least that's my opinion (and THAT'S a fact!)
In a way, it's like asking people what their favorite movie is or favorite food is (not to start a food fight). People prefer things based on many factors. Sometimes we may think we won't like a certain movie but we watch it and it was quite good. I think it's important to keep an open mind with this and in general. Especially cancer since while much is known and they're learning more each day, even more is not known. Nothing works all the time.
Unless of course one gets to Stage V...
My best to your husband and to you.
-phil

John23
Posts: 1832
Joined: Jan 2007

Please..... Be aware that a stage does not change. A "stage one"
cancer victim can die from metastasis and remain a "stage one".
A "stage four" means only that they clearly see that the cancer
had already spread.

Please do not become complacent thinking that "stage one"
offers a better outcome than one diagnosed as a stage four.
It simply does not work that way, and too, too many here
have realized that too, too late.

If an "alternative" is chosen, do that "alternative" first. An
"alternative" will not destroy the immune system or make the
body too weak to fight for itself, but a harsh, toxic chemical,
or radiation will. Once the body is made too weak, it might be
too late to expect much from any "alternative".

Take your time and explore all the options available, both
mainstream western medicine and the alternatives.

The choice is your husband's and your's. Do not rush!

My very best to you both,

John

Lifeisajourney
Posts: 217
Joined: Apr 2010

dtx 12/12/08-folfox 7x till 5/09...very healthy for my age. Chemo left me semi invalid, but went on with life till 3/11..when I got mets to liver. Onc said no chemo because it would weaken me too much for surgery. Tried liver resection 6/1/11 at a ncs hospital, liver was not viable for resection. I told onc no chemo, I was told about 6mos/year.....I am able so far to medicate issues that come, that I would not be able to do on chemo. MY choice, do not advocate this decision for anyone....too personal a decision. August 1 I have survived 14 mos without chemo.I know I will not beat this, but quality is important to me.
I wish they had a list of everyone listing diagnosis date and death date, it is the only way we can judge. I did not know Idlehunter,but watched her journey, she was a great roll model for us all.....but I thought she had been here for years......but I just found out she started her journey in 2009....I was 2008....I was stage 111 with 3 nodes out of 30...no obvious mets. I do not have any answers, but not everyone hits the averages I hear about....if I took chemo would I be here or would I gone....sick, I Only know I would not be better, cause chemo got me three years ago... Luck to all with your decisions.. PAT

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

I'm glad you're comfortable with your choice, it's what works for YOU. The same goes for how we view ourselves. One can be a Cancer Victim, or one can Have Cancer. I've noticed much has to do with a persons general outlook on life (or their fear of death) Whatever one chooses can easily rule their lives (or ruin them). Again, a personal choice...

One thing that is sometimes overlooked is that WE often have to be our own advocates. Often we delegate that responsibility to Oncologists, Surgeons, and Doctors then if/when something goes wrong, some will point a finger at someone. Getting a good team together and making informed decisions are crucial. There is a movement by “e-Patient Dave” deBronkart who is actively engaged in opening health care information directly to patients so we can play a (bigger) role in our care. That would go for whatever choice one makes. HeII, one can even be a Informed Victim if they so choose.
-phil

Annabelle41415's picture
Annabelle41415
Posts: 4226
Joined: Feb 2009

Agree completely with your post guitar guy. You have been in treatment for a long time and you are still going strong. Nice picture.

Kim

Lifeisajourney
Posts: 217
Joined: Apr 2010

when this started I researched oncs,but followed what all said was protocal...after the chemo reaction and being ned I started researching/ advocating. I would not point a finger at what might have been a mistake, because I choose the professionals...I do believe choices are made based on age and other reasons......but fear should never be a reason. In a disscusion with primary, he asked if I were afraid of dying,,,,I said no, just pain. We talked of how he sometimes feels he is treating the family not really doing what the patient wants...so maybe pain is my fear, I really don't think it was...quality was my motivation. MY decision was not what my onc wanted, 14 mos later, he thinks I have made a good decesion for me....I definitely think in most cases the worst case happenings are not discussed enough...we should have a bigger role in our decision....I admit to being a little slow to start. I Personally think we are mostly all informed victims..decisons are very peronal, I feel I WOULD never say take the chemo from what i now know....it has be a personal decisons based on knowledge/researching....my survival has gotten to be a joke. My husband has a heart problem, hopefully I'LL outlast him....for my sake...now we are losing people that were healthy months ago.....life is not really our choice,,,we just need to have quality at our age....choices, choices, choices,,,,ugh..PAT

steved
Posts: 836
Joined: Apr 2004

John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

steve

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

One can, and likely will, say cancer, is cancer, is cancer...
Yes, cancer IS cancer. Using similar geometric logic, a paper cut is like having a 12" long knife wound. Both go through the epidermis (skin) and blood most often comes out. A paper cut left untreated could cause complications if it becomes infected. So Stage I cancer, if not taken seriously, can certainly cause plenty of harm.
All things being equal, I'll take a paper cut...

RobinKaye
Posts: 93
Joined: Nov 2011

Steve, for statistical purposes you are always classified as the stage you were at diagnosis. So a Stage 1 will be a Stage 1 with recurrence. Technically if you were a Stage 1 at diagnosis and then have mets to the liver you are treated as a Stage 4 and for all intents and purposes you are but you will always be classified as a Stage 1.

Robin

John23
Posts: 1832
Joined: Jan 2007

Re:
"my understanding is that if you are stage 1 at the start and then
have distal mets you move to being a stage 4 ie your staging
changes as new information comes to light."

The NCI, along with all other cancer institutions will tell you that
the initial staging remains the same. It's fairly simple to look up!

Our departed friend Blake had posted the information some
time ago, and being the doubter that I am, I researched his claims
and findings. They were and remain to be true.

You can be "re-staged", but it is not normally done, and not much
medical need for it, either.

Qualifying for Insurance or disability purposes is usually the only
reason to be re-staged.

Best hopes for you!

John

Coppercent
Posts: 142
Joined: Jan 2012

I have always been under the understanding that the staging does not change just gets issues added to them.

Here is a pretty good explanation from the ACS. Most of the oncologists I have talked to have explained this the same way.

A cancer’s stage does not change

An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.

For example, let’s say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it’s called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it’s not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it’s first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

pog451
Posts: 20
Joined: Aug 2012

John23, what ARE you going on about? I only rarely come here (and I thought I had joined a while ago but have just rejoined) but if your posts are typical for the quality of information here Im glad Im not here more often.

Yes Stage 1s die, thats why their survival statistic isnt 100%, but it is something like 90% @5 years against someone who is stage IV at diagnosis whose statistical chance according to the current statistics is 10%. Yes its statistics and if it happens to you your statistic is 100% but a stage one diagnosis very clearly offers a better prognosis than stage IV IF treatment is then carried out. Yes it can still prgress and yes it can be wrongly diagnosed but on the whole, with conventional treatment, you are better off at Stage 1 than at IV.

I dont have enough experience with this board to know whether you are a survivor are just an anti-pharma activist and personally I base my treatment choices on evidence, not conspiracy-theory paranoia, but if I was an inexperienced poster I would look at some of the obvious BS you have posted just in this thread and wonder how much the rest of your advice is worth.

relaxoutdoors08
Posts: 518
Joined: May 2011

So Worried,
You are on the right track. Continue your Research and continue to take it one step at a time. I was told I am in the group to most likely have a recurrance and I could decide to not do chemo. I, of course chose chemo. In looking at final outcomes Stage II T4, having a second opinion is going to be helpful. Chemo is chemo, not a walk in the park as others shared, but doable. Six months of chemo with a watchful eye to avoid the "oxy" effects is doable. The surgeon sounds like he is telling you and your husband that chemo is recommended because of the T4???? The 2nd opinion will be helpful and now with your research you will be able to ask the needed questions. The 2nd opinion could clarify the T4 and the need for chemo. We are here for you and your husband.
NB

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

Greetings "so worried"

sorry you found us here... but I'm glad you're here and able to gather so many ideas, opinions and options to share with your husband and medical team.

I love the fact that you're able quickly see that everyone has very strong opinions to share.
This all helps you understand that you have several choices, and there most likely are no wrong choices.

I am stage IV, and everything happened so fast to me back in November/December 2011 that I didn't really consider NOT taking the chemo. I also didn't even question my medical team... once I assembled the correct people, with the right focus and attitude. (I interviewed 3 oncologists and visited 3 cancer treatment centers). Anyway, if it were me, speaking on 9 months of experience as a patient... 24 treatments of FolFox6 with Erbitux... and two surgeries... and plan to restart chemo in 3 weeks for a maintenance program... and if I was Stage II like your husband... i WOULD take the chemo as a "clean up plan"... if my doctors recommended it.

the side effects are difficult. I might research everything a bit more than i did... as Stage II tells me that you caught it BEFORE it has hit the liver, lungs, pelvic area or the brain... and it has NOT hit the lymph nodes... all that to me, is GREAT news.

I understand the diet, juice and other non-chemo treatments can work, and many people have strong opinions... but personally, I went with and would go with the medical chemo first and also change my diet (which i am doing now)

but through all of this, i am also changing my life. Enjoying each and every day more than ever before. Eating better, celebrating more and laughing more.
no, this is not the end of life... but for me, it's a wake up call.

good luck with your husbands decisions.... do your homework and be open to discuss, share, learn and be curious.

all my best

Joe

So Worried
Posts: 111
Joined: Aug 2012

I really appreciate your reply. Thank you so much. Everything is so stressful. Now I seem to have to deal with problems between the onco office and the insurance company. Won't really bore you with it, but someone is lying to me. I'll probably be on the phone for 5 hours tomorrow, so hopefully I won't have a mini nervous breakdown. I don't believe after everything we have gone through, now we have to deal with long and stupid phone calls. Good grief. Thank you so much again and I hope you are doing VERY well.

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

I'm almost 3 years removed from surgery. I was 2B and my Onc gave me the choice, chemo or no chemo. It's definitely a personal decision that impacts others. There is a lot of data out there, %'s and so on. For me %'s let me think the odds were in my favor, but I didn't want to wonder whether or not I did enough. I wanted to do everything I could and then move on, but again that's where I was at the time.

I did 12 treatments of FolFox over 6 months. My side effects were tough at the time, but manageable. Most side effects can be managed by talking through them with Dr.'s and nurses. I still have some Nuraphathy in my feet. It was bad for a year, but I hardly notice it now. Again, what % of people have these side effects and which side of the % will your husband fall on. No one can tell you.

The support of a care giver like yourself means everything, even when we are so scared we don't recognize it. There is a lot going on and talking about it helped me process it, even if I didn't want to. No one wants to do chemo so move past that questions. I thought about my reatction to different outcome scenarios, which sounds like your husband is doing also. It's a tough decision, and it's his, but you should participate. You're in my thoughts.

So Worried
Posts: 111
Joined: Aug 2012

I've been really supportive of my hubbie. I went with him to all the testing (when he first started having problems)...the upper gi, the ct scan, the colonoscopy, the ekg, the chest x-ray and of course the surgery, I stayed all day with him. I even quit my job so I can go on every single appt. (I guess we'll be poor forever). I told him whatever he decides to do either way, I will support him 100%. I don't ramble on and on with him like I do in here :) I just smile and say everything will be ok and try to get him to eat healthy foods. I never persuaded him to do chemo or not to do chemo. It's totally his decision and I will stand by him forever. Soo....it's just really tough for me, because I am really a wimpy person and can't imagine him getting really sick, I couldn't stand to see it....I am just really stressed ever since this started, I just gripe and moan in here but not to him.. lol...

Thank you so much for your input. It sounds as though you are doing very well. I am SO glad for you. How long ago did you finish your treatment? Also, were you able to work while doing folfox, or not really?

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

Obviously you're giving him a lot of support, and I hope you feel supported as well. He's not the only one this impacts. I finished my treatments in April of 2010, and I'm doing great. I worked through 5 of the 6 months of treatment. My work was very flexible. They knew I could take the time if I wanted and they appreciated any time I put in. There were days that were tough and I wouldn't go in, usually a day or two after the pump was removed that I felt my worse. Then I would recover for a week and do it again. Toward the end I was just too tired to work. I would come home after 8 hrs and fall asleep. That's when I took the time off, because I wasn't getting any time with my family. My Onc told me that I also needed to take another month to recover. Open communication with my Dr's was a key, they have the experience and they can helped me when I experienced sideeffects. It was also good to stay informed on my own. This is a great site, but the majority of us aren't Dr's, but we have PHD's in support. To be honest I don't logon much anymore and when I do I try to stay away from my opinion and just relate my story.

I will be thinking of you both.

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

My wife's treatment is based on Japanese papers with oral UFT, which I think has advantages for continuous low dose treatment. 300 mg UFT + PSK and 300 mg UFT + 800 mg Cimetidine have very good results with 12 mo to 24 months daily treatment for stage II and III patients. Along with modified Life Extension protocols with some extras, UFT+leucovorin+CIM+PSK has worked well even for stage IV with few side effects.

Xeloda is the closest oral drug you can get to UFT in the US. Perhaps 1200 mg to 2000 mg of daily xeloda would roughly correspond to 300-400 mg UFT with a little leucovorin. Long term cimetidine use should be based on a positive CA19-9 stained tumor sample per Matsumoto 2002.

We are highly integrative, globally. She has had a great quality of life and is beating the standard statistics, too.

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Id do what your dr recomends or get a 2nd opinion if still unclear. Its real great that NO nodes are involved. Ups survival chances tremendously.

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

I think most people are afraid of the side effects of chemo... I am on my 5th week right now and I have had no unbearable side effect of xeloda 2000 mg ...

I beat the nausea with ginger paste before taking it

Its better to get rid of all the cancer now when he is young than if it Godforbid comes back and maybe too late...

I kept telling me before starting radiation and chemo that it is nothing but a higher dose of antibiotics and i rather be sick from treatment than sick from the disease itself.

hope u guys make the right choice for his survival and good health.

Hugs
Trisha!

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

I know ginger is good for nausea, but ginger paste? I love pickled ginger. How do yo take ginger paste without burning your face off?

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

Rick -

I used to get it from the chinese dumpling joints - they usually have that ginger paste on their tables and i wud buy $2 worth it per week - a tablespoonful of it was enough and it didnt burn at all -

I was told I could do ginger capsule too but I didnt wanna take any capsule with chemo..

Sonia32's picture
Sonia32
Posts: 1067
Joined: Mar 2009

please do research on having chemo or not. way the pros and cons then decide together. as i was told by a cancer research scientist everyones cancer is different.

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

btw ur husband's diagnosis came in on June 25 - mine too same day - I had colonoscopy on 22nd and confirmed on 25th.

will finish chemo radiation next week -

Wenchie
Posts: 88
Joined: Apr 2009

I was diagnosed with Stage III and after surgery, I had radiation and then chemo. I've had no recurrence in the colon but due to having 1 lymph node positive, I now have metastatic disease. Even though he's Stage II with no lymph node involvement, I'd still do the radiation on the colon and the "mop-up" chemo which would most likely be Oxaliplatin which I breezed through. Yep, I'd definitely take any precautions I could to ensure every thing was outta there, gone, finis!

Cathleen Mary
Posts: 556
Joined: May 2011

My cancer was also stage 11a with no node involvement, clear margins, and had gone through the wall. After meeting with the tumor board, I chose no chemo. It has been three years and I am still NED. My CEA has steadily risen from 1.5 to 3.6 . I just had an endometrial biopsy and am awaiting results. I have been told that if I have endometrial cancer it is a second primary, not mets. As others have said, there is no ''one size fits all' answer. I was 60 yrs old when diagnosed and colon cancer runs in my family though I do not have Lynch syndrome. I am watched closely and have no regrets. That said, I would probably have no regrets if I had chemo either. I made the decision that I felt was best for me and my family at the time. That is all any if us can do after getting all the info we can. We live with the ambiguity of cancer no matter what.
Best wishes...and prayers for health.

Cathleen Mary

So Worried
Posts: 111
Joined: Aug 2012

I wish you a lot of luck! I'm not sure which way my hubby is going to go with his decision, but the way he is talking, I'm thinking he might choose, no chemo. I'm scared and nervous either way! I just hate this new life :(

Again, thank you to everyone. Every single post makes sense and they are all pretty different. LOL

I guess we are just going to have to realize...that:
If he does chemo - it could come back
IF he does no chemo - it could come back

The statistics / percentages that Phil wrote on his post about his friend are interesting. Hmmm
Thank you Phil, too. And everyone else...I just can't remember everyone's name right now.
I wish everyone success, good health, and tons of prayers for all of you and your loved ones.

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

Welcome! At the same time, I am sorry that you had to join us and am sending good thoughts and prayers for you.

I started with a diagnosis of Adenocarcinoma (Goblet Cell) in the Appendix and Cecum. (Sept 2007) I had the surgery and they missed a little on the margin and went back for the transverse colon, and 28 lymph nodes. All seemed clear of cancer. Then in June 2010 I had terrible abdominal pains and went in for the next surgery. Diagnosed with Signet Ring Cell, removal of the ostimosis (Surgical site) and 30" of the small intestine 3 additional tumors. Did my 6 months of FolFox. August 2012 Diagnosed Signet Ring Cell again. My CEA was 1125.

My Point: I did everything right. I had perfect blood chemistry. I changed my blood chemistry to alkaline. I subjected myself to chemo. I lost weigh and got my body in even better physical shape. I still had a recurrence. Unless Chemo is going to be a help, I would think hard about doing it again. Whom knows I am not there yet, to make that decision. Chemo damaged my nerves, my eye sight, hearing loss, and made me weak for 18 months. Consider Diet, and other therapies, before subjecting to the expense and trauma of Chemo.

I would also get a second opinion on the slides of what type of cancer the Adenocarcenoid is! It is easy to misdiagnose. (Mine was) I did see pictures of both cell types on a 17 screen, and they are exceptionally close. That us why I recommend a second opinion. Read the AntiCancer Diet, it is informative on what new treatments are coming and has a good attitude about the battle of cancer.

Best Always, mike

So Worried
Posts: 111
Joined: Aug 2012

I'm just wondering, what do you mean by what type of cancer it is?
Thank you.

John23
Posts: 1832
Joined: Jan 2007

Mike's story is fairly common, and describes what having cancer
is really like.

There are absolutely no guarantees that any modality will work,
so picking one that does the least amount of damage seems to
make good sense.

Starting with any alternative leaves you in a better position, since
very few will damage the immune system or weaken health. That
leaves an individual in better shape if the "alternative" fails to work,
and healthy enough to start harsh chemical treatments, if there's
no other option.

Starting with harsh, damaging treatments first, leaves one handicapped
with poorer health and a weakened immune system. Expecting an
alternative to do great things is made much more difficult. Too much
damage, and one can be left with a very poor functioning immune system,
and nothing else but more harsh chemicals to look forward to.

Here's a really simple explanation of cancer cells:

Cancer cells begin life as a normal cell, but one that has been badly
damaged. Too damaged to be able to take orders from the body,
the cell begins to die. The immune system normally removes cells
like that, but for some reason, in some of us, it overlooks that damaged
cell. The cell begins to use the fermentation process to remain alive.
It's like mold growing on a damp surface... It's just the natural transformation
from one form of life to another.

The cancer cell takes on some of the the characteristics of the host cell,
and that is what the "type" is referred to. Some grow in the shape of a
"goblet", some in the shape of a "signet ring". Shapes vary, as well the
aggressiveness of the cell's ability to grow.

But any and all the cancer cells are the same; they all stay alive via the
fermentation process. They use glucose faster than most normal cells
in the area they came from, and "steal" glucose from the body, starving
good cells that also need glucose to survive.

The trouble with using chemicals to try to kill cancer cells, is that there
is no way presently, to target just the cancer cells. Chemical therapy
and radiation damage as many (or more) good cells, as either does to the
cancer cells. It's unfortunate, but true.

If your husband does not desire to begin with chemical therapy, he should
at least explore the use of some of the "alternatives" that others have had
some success with.

You can click on my name, go to my profile page, and read the "blog"
section, if you'd like.

You might want to do a search here for "2bhealed" and "scouty", and
read about their success with "juicing".

There are indeed other options to use to fight cancer. Harsh chemicals
and radioactive nuclear beams aren't the only way to kill something that
stays alive using such simple means.

If the cancer is about to kill you, or invade an area that will surely cost
you your life, then to use whatever works fastest makes perfect sense!

Your husband will do fine, but he has to explore all the options, not just
sit and watch time go by. The cancer is there because something went
wrong, and he should do something to try to correct the condition that exists.

Just killing a few cancer cells with chemicals and radiation, doesn't always do
the trick........ I think looking at all the sadness we've had here this past year
alone, will indicate the real failure of what "the cancer industry" has to offer.

You husband has other options, along with conventional medicine, and he
has the time now to explore it all.

Oh..... and please do locate another colorectal surgeon, and get another
opinion. The opinion should be from a surgeon not of the same group
or organization as the present one. Oncologists sell chemical treatments,
surgeons are usually more objective.

Best hopes for a great, long life for you both!

John

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

Mike's story is fairly common. Often, doctors misdiagnose. It really shows the importance of choosing GOOD doctors. No matter how one chooses to deal with their cancer, if you don't know what you're fighting it can be hard to pick the tools to use. How many here has been misdiagnosed or had errors made that caused other problems? You rarely get to do-over the first approach, get the experts even if the consultations are paid by yourself. Mine were out of my own pocket but cost less than $750 over 6 months. Other doctors can follow the protocol if that's the route you choose. But cancer will do what it does if given the chance.

"The trouble with using chemicals to try to kill cancer cells, is that there
is no way presently, to target just the cancer cells. Chemical therapy
and radiation damage as many (or more) good cells, as either does to the
cancer cells. It's unfortunate, but true."

I can't figure out where your statements come from many times John, cancer cells CAN be targeted. Those are the types of advances being made contrary to what you believe. Fortunately, your statement is false.

"I think looking at all the sadness we've had here this past year
alone, will indicate the real failure of what "the cancer industry" has to offer."

I wonder how many people also lose their battle using TCM and other methods? There's no data so it's easy to blame chemo. I personally find your comments totally uncalled for. It certainly sounds like you're blaming them for their choices and suggesting TCM would have saved them. There's nothing to back that statement up at all.

True, there's no treatment that works for everyone all the time. Get the best doctors you can find (they are out there, I can't have the only one) and use the best treatment you can. Often, time is crucial. One may choose to try TCM or other non-chemo options. If they fail, they fail. Just like if one chooses chemo. It certainly doesn't alway work but it can work.

"If your husband does not desire to begin with chemical therapy, he should at least explore the use of some of the "alternatives" that others have had some success with." I totally agree with that one John...

Best to all with whatever approach they choose...
-phil
PS: posting opinions is very different than posting facts.
You may feel John that I'm attacking you but I'm not.
I'm just commenting on your comments when they are
misleading or false. Many new people come here and
we should try to keep ir "real"...

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