Got the biopsy results after surgery

askmimi

plsletitrain said:

I'm with you sandiabuddy

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.  

Thanks

I agree. Thanks!

Michelle

askmimi

beaumontdave said:

Sorry your caught in this

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

 

Thanks!

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

askmimi

airborne72 said:

I agree...

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

Thanks

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

askmimi

darcher said:

I didn't mean to not try something else.

   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.    

Thank you

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

askmimi

BRHMichigan said:

Sorry Mimi

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

Thank you

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

askmimi

steveja said:

Umm -

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.

 

thank you

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

Michelle

askmimi

linda7408 said:

Got the Biopsy

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.

Thank you

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