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Got the biopsy results after surgery

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

This is like a nightmare we can't wake from.  My hubby had his colon resection on Wednesday and the results from the biopsies of the lymph nodes came back- 10 out of 15 are cancer.  So Stage 3C.  We are just in shock.  He was asymptomactic.  Just went for his first screening.  I'm still trying to process.  Met an oncologist today.  He'll be getting chemo for around 6 months- every other week X12.  I don't even know what else to say.  I need to learn more so I can develop good questions, but I'm so lost.  We are devastated.  But, we are prepared to fight!  Hubby is having some complications post op also- passing a lot of clots, and having low bp and tachycardia.  They gave him an iron infusion today, so hopefully that will help him.  

Annabelle41415's picture
Annabelle41415
Posts: 6301
Joined: Feb 2009

That is so sad to hear and I'm sorry you have to be here but now is the time to get as much knowledge as you can from your doctors, classes, this board, and any others if you know that have gone through it.  Don't go on the internet as the information is outdated and not accurate.  The statistics are incorrect on the search engines.  We have a wealth of information on this board here so be active if you need questions answered, please ask.  Wishing your husband well.  He can get through this - we all have.  He might have some trouble, but there is options available.  Get a second opinion if you are not comfortable with the direction your doctors want to take.  It's always good to get one anyway.

Kim

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

Thank you for your reply.  I"m not as active on the board as I would like to be.  Trying to do too many things at once!  He had more complications, with a PE that brought him back to the hospital.  He goes for his first official visit with the Oncologist on Monday.  Then we will know when he starts chemo.

ron50's picture
ron50
Posts: 1722
Joined: Nov 2001

   I know it may not seem like it now whilst the world seems to be crashing down around you. I was dxed with stage3c into six nodes. My surgeon said it was so aggessive he could almost see it growing. He gave me no more than three years at the most and to do anything I really wanted to do before I became too ill. Itold him not to be concerned as I did not die from colon cancer. He had a good  laugh at that ( not mocking ) and wished me well. After seven years he finally conceeded that cancer was not going to kill me and declared me cured of it. He warned me to remain vigilant and I have. I have now been cancer free for over twenty years, coming up for 21 in Jan 20!9.  Take heart , some of us do survive. Sending you both a hug and my best wishes for a full recovery. Ron.

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

I'm so happy to hear stories like yours.  I'm glad you're doing so well!  

Michelle

SandiaBuddy's picture
SandiaBuddy
Posts: 953
Joined: Apr 2017

Surgery is challenging. From my perspective it might be best for you to focus on helping your spouse recover from the surgery and enjoying, to the best of both your abilities, each new day as it dawns.  There is plenty to learn about chemo and the paths to the future, but there will be time for that in the future.  The one thing you might want to take a look at is adding Cimetadine (Tagamet) to his regime.  You can look at some of the posts on this board and ask your doctor about it.  But from my experience, the "one day at a time" mantra might be most helpful in the immediate post-surgery time period.  Good luck to both of you.

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

I will look up the information on Cimatadine and show my husband.  Thank you for the information!

Michelle

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  It seems like you want to get educated in the treatments and such.  Keep in mind the best you'll get comparitivily speaking is an intro course into what ever it is your investigating.  For the most part do as the doctors tell you.  You'll see things like some quack advocating the lowering of alcalinity levels as a way to beat it.  It's false. Same goes goes for diatomaceous earth and deer placenta.  None of that stuff does anything except lighten your bank account. The oncologists know what they're doing and have seen this hundreds of times and they have the education to back it up.  

SandiaBuddy's picture
SandiaBuddy
Posts: 953
Joined: Apr 2017

Darcher:

You obviously have strong and heartfelt opinions on alternative approaches to which you are certainly entitled.  However, my guess is that there are about as many approaches to this topic as there are people on this forum.  As for me, I believe my doctors are good natured people with years of education and experience, but I also think their tools are like hammers and they are out looking for nails (surgery and chemotherapy). 

I will give you one of many concrete examples of where I believe they failed.  There is a correlation between colon cancer and Vitamin D deficiency.  My doctors never checked my vitamin D level and never recommended supplementation or additional sun exposure. When I learned of the link, I asked to have my level tested, which they did.  I was deficient in Vitamin D.  People with the highest blood levels of Vitamin D have as much as a 72% reduction in their chance for cancer recurrence (for me, chemotherapy only gave me a 10% reduction in the chance of recurrence).  However, I did not find this out until I asked and until five months after my surgery.  I wish I had known earlier and started supplementing earlier.  I wish someone had told me.  Ironically, after our conversation, that same doctor tested her level, found out she was deficient, and has started supplementation.

There are many other issues like this.  Exercise is clearly linked to avoiding a recurrence of cancer.  My doctors never counseled me on the importance of exercise.  My doctors told me to resume my normal diet.  However, there is evidence that a Mediterranean or pescovegetarian diet reduces the chances of recurrence.  They never advised me.

I come to this forum regularly hoping to pick up new tips, but also to share information that I have learned.  I do not recommend that others do what I do, they should research it independently, including consulting with their doctors.  But I do try to make mention of things that I did not know at the start of this process, but wish I did.  Often these are things that the doctors never mentioned.  Let’s leave room for the variety of people on this board and the variety of approaches to this horrible disease.

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

Thanks- he plans to follow the Oncologist leading of FOLFOX (sp?) and go from there.  Sounds like that is the standard of care for a first line of treatment.  He is not opposed to a clinical trial or something, along with the FOLFOX, but nothing too "out there".

Michelle

plsletitrain
Posts: 253
Joined: Jul 2017

I think alternative approaches should not be taken lightly.  Of course, caution has to be exercised when sifting through these alternative medicines but I personally believe chemo isn't the only option for those with cancer.  

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

I agree. Thanks!

Michelle

beaumontdave's picture
beaumontdave
Posts: 1012
Joined: Aug 2013

Sorry your caught in this cancer trip, but time and treatment will break the overwhelming initial fears into manageble periods of regular anxiety, or better depending on how you manage your thoughts and compartmentalize your daily activity. Easy to say, I know, but many hear have cultivated ways of coping through mindfulness, meditation, faith, even medication when all else fails. Your at the start of a long path filled with uncertainties, so feel free to unload here, and learn what the rest have discovered about themselves and this disease, and keep a hopeful thought, sometimes it's that alone that carried me through some of the rough stuff.................................................Dave

 

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

Thank you- I have connected with a few people that have gone through this as a spouse and this group has been fabulous.  Thank you!

Michelle

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

I am a very conservative individual who most often supports/follows the establishment.  However, I agree that there are multiple approaches to preventing and controlling cancer.  Unfortunately, emotions and the desire for expedient action too often cause us to blindly run to the oncology clinic seeking a cure.  I did.

This subject has been contested with opinions all over the map, and I do not mean to stir up any debate.  I just want to support the position that prevention and treatment of cancer "can" include a wide spectrum of modalities, but as Darcher implied - let the buyer beware.

Jim

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

We are open to not necessarily alternatives, but additional therapies to include with FOLFOX if something appears to show an improvement in a good study.  Thanks!

Michelle

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

   My point was to avoid only doing some off the wall treatment and not giving the standard treatments their due course.   That was all. 

My oncologist was a big believer in exercise and I think they look at us and assume (perhaps wrongly) that we already engage in physical activity.   I generally avoid sunlight as a preventivie measure to avoid skin cancer plus it ages you.  Yeah, that worked out real well, lol. I agree exercising helps tremendously.   I may do some vitamin D suppliments too. It can't hurt.    

Annabelle41415's picture
Annabelle41415
Posts: 6301
Joined: Feb 2009

No worrys as could read in your post it wasn't anything different.  Never assumed you were saying don't try any other approaches but agree that if you trust in your doctor than you do what you think is best for you, no matter what it is.  I'm with you on exercising too - it's a great booster in energy and helps even when you aren't feeling well.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 953
Joined: Apr 2017

DArcher:   No problem.  You might ask them to test your Vitamin D levels in your next go-round.  I always have to stay after them to get the test done, and then as often as not, they forget to order it. It is just not typically in their tool box.  It took me more than three months to get my vitamin D levels up, so the change (at least for me) is not immediate like with other drugs and supplements.  I also have added sun-tanning to my regime, as some studies seem to indicate that a Vitamin D supplement alone may not be enough to gain the full health benefits.  Cheers.

Annabelle41415's picture
Annabelle41415
Posts: 6301
Joined: Feb 2009

My doctor won't test for it as he says the insurance won't pay for it.  It's not considered a relevant blood test to most doctors, but to us colo/rectal patients it's a plus.  I've heard that low Vitamin D is a component in this type of cancer.  It could be wrong now and they might have changed that but this is what a member on this board told me long time ago.  When mine was checked after being diagnosed it was low.  I've always paid for that test on my own.  Agree with you on that test for sure.

Kim

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

My hubby is increasing his exercise (as he is able after surgery) and has completely changed his diet to one that eliminates processed food and red meat.  I need to see what else he is including in this new diet so that I can prepare accordingly.

Michelle

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Welcome, and we are all sorry you are joining us. However, you have found a group of people who know exactly what you're feeling. This is the first place I go when I need some empathy and/or advice. You can see from the conversation here we are all passionate about our choices. And you will be faced with many decisions ahead. I have tried both traditional and alternative treatments. And still employ both. Whatever you choose, don't give up hope. A positive attitude goes a long way with this disease. If something isn't working for your husband, there are other drugs or paths to take. Just get through each hurdle and keep fighting. Right now you just want to see your husband get stronger and recover fully from his surgery. Every day truly is a gift. We'll be praying for your family! --Beth

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

I truly appreciate this group as there are not many out there that know specifically what we are going through (either cancer survivor or spouse of one).  Thank you!

Michelle

steveja
Posts: 41
Joined: Apr 2017

There is some difference of opinion here.

1/ The web is a GREAT source of very current information, however it is absolutly necessary to be VERY SELECTIVE, in the sources you choose to follow.

If you are looking for general information the NIH website (cancer.gov) is excellent, then this site, cancer.org, then websites for research hospitals (Memorial Sloan Kettering Cancer Center, (mskcc.org), MD Anderson, Mayo Clinic, Cleveland Clinic, Dana-Farber.   But I would avoid even those cancer centers that advertize on TV (the FDA has 'nicked' some in the past for exaggerated claims).

If you you have the academic background to read technical papers, understand the statistics, and to carefully discern the utility and limitations of studies - then  NIH pubmed www.ncbi.nlm.nih.gov is a great search engine that will take you to high reputable AND rather disreputable journal articles.  Otherwise it can become a means toward self-deception.

Yes, there are lots of shady websites offing unrealistic hope.  Beware.

2) There are a number of methods that MAY reduce colon polyp or cancer recurrence and have an increasing number of studies supporting this view, however the evidence is often insufficient for a strong recommendation.  The NCCN Guideline V2.2018 includes the following:

- Maintain a healthy weight

- 30 min of vigorous exercise most days.

- more emphasis on plants in diet  (more veggies, does not mean vegan)

- Consider 325mg aspirin per day (not 81mg), but pass this by your physician since not everyone can tolerate so much aspirin.

- no more than 1(female) or 2(male) alcoholic beverages per day.

- cease smoking

There are some pro & con studies wrt vitamin D, but the recent NCCN guideline states ...

Citing this report and the lack of level 1 evidence, the

panel does not currently recommend routine screening for vitamin D

deficiency or supplementation of vitamin D in patients with colorectal

cancer.

Similarly NCCN guideline sites several studies the suggest increased calcium intake reduces recurrence, but the evidence is too weak and tenative to recommend.

Evidence for omega-3 consumption is very weak, but reduction of red-meat consumption is clearer.

Some evidence suggests avoiding high glycemic index foods, sugars & simple carbs, esp sugary drinks.

There is ONE approved immuno-therapy for CRC, but it's only effective against a specific type of CRC(only ~15% of us) and they only approve it after chemo.

----

The recommendations from NCCN should form the basis for everyone interested in avoiding recurrence.  Exercise, healthy diet, daily aspirin are on the list.   Personally I take vit-D & calcium too.  I realize there is a low chance it will help, but it's low-cost with very little chance of harm.

When people get panic-y they are likely to try all sorts of irrational things, like quack treatements, and off-the-grid clinics. Don't bother, it's just a waste of time & money.  If you are facing long odds try a clinical trial or at least pick some treatement that has published successful clinical trials on a significant number of ppl.

====

On askmimi's specific issue:

CRC stage IIIc as a 5-year relative survival rate around 58%.   

https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/survival-rates.html

 

Relative survival describes risk compared to a cohort of the same age, race & gender.   Note that there is a roughly 5-6% added risk-factor among the CRC population b/c it often strikes ppl who have bad diets, are obese, drink too much and/or don't get enough exercise.  IOW CRC patients tend to be unhealthy in other ways.  So once your hubby's condition allows it, he can start  improving that 58% figure considerable with diet, weight management, exercise ...

I didn't have chemo, but from all reports it's a b*tch.  Others on this forum can help w/ the stress & esp how to cope with it.

I think you should anticipate some grieving for the lost life-path you both expected.  Cancer is fundamentally unfair, and quite frustrating, and there is a very high probability that he will take some of that out on you in time since you are the closest target.   My OPINION is that this is more likely to manifest a few months out, once the shock wears off, rather than immediately.

Something like 90% of cancer patients, even early stage ones, suffer from psychological problems dealing with the uncertainty.  The cancer jargon is "distress" since it's below an anxiety disorder.   Sometimes called "fear of cancer recurrence".  Many sources claim that Cognitive Behavior Therapy(CBT) therapy is useful, but there are alternatives. In any case - plan on some therapy.  There are some on-line CBT therapists, reasonably priced.   I'm 2 years past surgery and I still can't sleep well, especially when new tests are ordered.

There are a number of tests you should have.  Certainly you had a CEA level pre-surgery.   CEA is a crummy test that is barely sufficient to tell Docs when to try a CT scan or sometime IF chemo is working.   It has no diagnostic significance till high levels.  Some sources suggest a CA19-9 test us useful in addition.  Your hubby should also have had a blood differential panel (CBC+DIFF) pre-surgery and some of the numbers can be used to indicate how well (or poorly) his immune system was reacting to the tumor (neutrophil:lymphocyte ratio, or a calculated SII index).  A CRP (or hsCRP) C-reactive protein level pre-surgery might have been useful, but I doubt it's meaningful while recovering from surgury or taking chemo.

The tumor certainly had a basic histology exam - and that would tell the degree of differentiation (low, moderate, high) & dysplasia and should say whether it was MSI or MSS (micro satelite stable/instable).  But there are many new tumor DNA genetic tests.  These can sometimes tell which chemo regimen is likely to be effective, or certainly whether some immunotherapy might be useful.   BRAF/KRAS/RAS and a handful of other genetic features may be very important later.  Ask.

--

There is nothing here to "fight".  It's our own bodies acting as they will, given the circumstances. 

You will have to take on more of a lead-role, esp when he is suffering from chemo or otherwise "down"   Ask Docs the hard questions that you may feel like avoiding.  Press them. Why X?  What are the alternatives?  The probable outcomes&problems?  Keep written notes.

Listening to your husband may be better than talking.  I was resentful of all the well-meaning but ignorant comments ppl made (now I just bite my lip & sneer).

Pity and sorrow are the real enemies, so I won't say "I'm sorry" but I will wish you both success in your struggle over this harsher than expected terrain.

 

SandiaBuddy's picture
SandiaBuddy
Posts: 953
Joined: Apr 2017

First, I want to apologize to Mimi for stomping all over her post.  This usually does not happen here, but sometimes the thread veers off in another direction.  

The lesson for me is that there are multiple approaches to this disease and it is a highly personal choice.  Some people think doctors have the only answers, some people think doctors are solely chemo dispensers, and some think a little of both.  I will strive to limit my comments to how things apply to me and to be as respectful as possible to the choices that others make.  With that, I will close my comments on this issue.

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

Thank you for all of this information!  I truly appreciate it.  Thank you!

Michelle

linda7408
Posts: 21
Joined: Mar 2018

Hi. I had rectal cancer and needed to have the radiation, the folfox for 6 months and a resection. Afterwards I had the low bp and tachardia for a

good 6 months. I thought I was doing something wrong! Noone could explain it. The more I read the more I find it is fairly common. Noone oould figure it out

but it was either from the surgery itself or from dehydration. I felt good when I was attached to the bag of chemo and symptoms started after it was taken off.

A lot you will figure out yourself. Stick to your guns and make the doctors listen to you.  They were able to get all mine.

askmimi's picture
askmimi
Posts: 19
Joined: Jul 2018

Thank you for your response.  His bp seems to have leveled out, but he does have the tachycardia still. Plus, he ended up getting readmitted with a PE, so he's been dealing with that as well.

Michelle

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