CSN Login
Members Online: 2

You are here

Looking for answers

the_widower
Posts: 3
Joined: Mar 2019

I don't mean to be a damper on anyone else's battle with colorectal cancer, but I've just lost my wife to it and I'm looking for support groups... and answers.

She was diagnosed stage IV in July 2017. It was a "right-sided" cancer, with the primary tumor in her transverse colon. By July 2018 they stopped trying to treat the primary cancer, especially after brain mets were discovered. The AANS calls treating brain mets while the primary cancer is not under control a "futile endeavor" - hers was never under control.

The disease progressed while she was on mFOLFOX6+Avastin, 6 cycles, it was known that the disease was progressing after the 3rd cycle but she was kept on it anyway. Then she had an adverse reaction to the oxaliplatin component on the 7th cycle and was switched to FOLFIRI+Avastin, it was known that the disease was progressing after the 3rd cycle but she was kept on it for 5 more cycles anyway. There were also a couple of medically-unnecessary delays, 6 extra days between the 1st and 2nd FOLFOX cycles, then 8 extra days between the 1st and 2nd FOLFIRI cycles. Did that allow the tumor microenvironments opportunities to develop or increase resistance?

Changeup to a different, larger treatment clinic, where she was put back on FOLFOX, 3 cycles, then Lonsurf, 3.5 days into a 2nd cycle when she was told to stop for clinical trial screening. Then, as I said, all control efforts were stopped after discovering brain mets while screening for the trial in July 2018. She slipped away in October 2018.

Given the diagnosis (stage IV) she had about a 13 in 100 chance of surviving to 5 years, median survival is about 30 months from diagnosis IIRC, she was gone in less than 15. I think that medical errors reduced her chances to 0 or less than that. But where to find a doctor who will go to bat against another doctor? It's like there's a thin white labcoat line, to compare with the thin blue police line.

I have a lot more questions, here are a few:

  • Given that CEA kept going up, that scans consistently showed new and growth of existing tumors but her treatment regimen was not altered to find something more efficacious in a timely fashion, I'm wondering how long until failure to act becomes deliberate withholding and an actionable medical error.
  • What exactly is CEA? A tumor marker, but how reliable is it as a progression indicator? Is suddenly not testing it, repeatedly, after testing it for months, an oversight or a novel attempt to dodge the withholding & concealing liability?
  • She was tested for CA 125 after mets to her ovaries caused light menstruation-like bleeding, she had been menopausal for 5 years. CA 125 was high, that was followed up with a HER2 genomic mutation test - negative.
  • Before that, after cycle 3 when FOLFOX was discovered to be ineffective at the first treatment venue, genomic testing was ordered: KRAS-positive, BRAF-negative. Shouldn't that have been tested before or when she began chemo?
  • She was tested for micro-satellite instability at diagnosis, PMS2, MLH1, MSH2 and MSH6 were tested and found to be normal so MSI-stable.
  • She was not tested for any of the other mutations that predispose to Lynch Syndrome or for PIK3CA. What else should she have been tested for?
  • Given her stage at diagnosis, when she began reporting new and chronic back pain shouldn't failure to thoroughly investigate and monitor that also be thought of as a medical error?
  • How about if once finally agreeing to order an MRI, the order doesn't include contrast, the patient experiences claustrophobia in the MRI machine and the scan isn't finished?

Here, the oncologist diagnosed early-onset arthritis with no evidence of metastatis to the spine... even though an earlier scan with contrast observed unusual focal uptake in the region where she was reporting the chronic back pain and recommended following up?

How about if that same earlier scan also revealed unusual focal uptake at the base of her skull, but that wasn't "diagnosed" until a year later while screening for the clinical trial?

Does any of that sound like a medical error?

I've been doing a lot of reading this past 168 days. We were told that colon cancer mets to brain and spine were unusual, practically unheard of... my reading exposes that as a lie. While mets to those locations do not happen in a majority of cases, they still do happen often-enough in advanced cases that oncologists should be mindful and watchful, especially where patients report new, chronic pain involving bone.

One more question:

  • When she was put back on an oxaliplatin-containing treatment at the second clinic, it was a smaller dose and delivered with Benadryl. Does Benadryl interfere with oxaliplatin or either of the other two ingredients in FOLFOX?

I miss her. 19 years together, our story wasn't supposed to end like this.

Slow-runner
Posts: 53
Joined: Oct 2017

Dear Looking, First, I am so very, very sorry for your loss. I have no words to heal the hole in your heart, it probably will never heal but hopefully your good memories may make it hurt less.  My husband is also Stage IV, diagnosed Sept. 2017. He was started on Folfox, then Fulfuri, then had an embolization to the liver, then a clinical trial, then Avastin and Lonsurf, now back on the Fulfuri without the 5FU. Right now I am scared because these cancer cells are getting the upper hand (again) but I believe that his doctor is doing his best, using the best methods available to help him stay one step ahead of the disease for as long as he can.  Reading your post I feel your wife was in good hands even though the outcome was not what it "was supposed to be".  When someone so close to us passes, I think its natural to want to place blame and look for reasons.  Unfortunately science has not figured cancer out yet, it's getting there but not in time for us. On the other hand, none of us is guaranteed another day, whether we have CA or not.  I hope the 19 years you had together were great ones, I hope you can find comfort in the fact that you were there for her and shared love that not everyone gets to experience.  Take care.

Trubrit's picture
Trubrit
Posts: 4861
Joined: Jan 2013

to a forum that nobody wants to be a part of. 

Don't worry about being a 'damper' on anyones battle. We have members passing away frequently enough that we feel the pain. 

I have no answers to your questions.  We have members of the forum who have lost their loved ones to Cancer; most of them don't visit us again, others pop in (thinking of you, Linda) and we have one member here whose wife passed away while he too battles the dreaded disease. I'm sure he will see your post, and be able to share words of comfort that only those who have passed through this stage, can.

I wish you the best as you move forward, however slowly, into this new stage of your life. And I pray that you get the answers you seek, and closer in some form. 

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

First, I want to express my sorrow at what you're going through and the loss of your wife. I can't imagine how hard it must be. I don't know if this is helpful but when they do a CT scan theygenerally only look at the abdominal area. It takes a PET scan to see where cancer might be in the entire body. At least that's my understanding. But I'm no expert.

I hope you can find what you're looking for to help you through this. Take care.

Jan

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I am so sorry for your loss.  I can understand your concerns regarding your dear wife's treatment, it is normal to be looking for answers.

That said only a medical expert can answer most of your questions, and even then I am not sure they would be willing to offer an opinion as to any error, since cancer has the ability to mutate during treatments and foil the efforts for controling it.

While colon cancer mets to the brain may not be statistically high, we have had a number of members die from it.  Chemo does not work on these mets because of the membrane barrier around the brain.  One person actually had full brain radiation which caused other disfunction and may have only added days or weeks of life.  One had surgery and it too was only minimally successful since not all was able to be removed.

The CEA marker can be a reliable indicator for some but not all colon cancer patients.  It can be impacted by other things such as the dying off of cancer cells, as well as infection from other causes.  Monitoring the CEA for trending up or down is about all one can do to get an indication of the effectiveness of treatment.  Some stage 4 patients have never had a CEA outside of the "normal" range.

While we all members of the colorectal cancer club, not all of these are the same.  Some are slow growing and some are very agressive in spread.  From what I have read on here from other folks, testing of genetic mutations most often is not done until a treatment stops working and they must try another.  Then they will do it to try to determine next best treatment to try.

The issue of CT scan vs PET scan seems to vary among doctors.  I initially had a CT scan with contrast of the chest, abdomin and pelvis to assist in determining first steps in treatment...that is to determine if there as spread from the primary tumor.  Some folks here have reported that their CT scan did not show spread, but with symptoms were given a "nose to toes" PET scan where the mets did show up.

Delays between scheduled treatment sessions is not uncommon due to weekends, holidays, or a patient request for time delay.  Short delays are probably not significant, but as with the cancer no one actually knows...they just base it on past experience.

From what you wrote, it seems that your wife's primary tumor was not operable and the spread to the brain was relatively quick.

I know you want answers, but hope that with time you can live with the fact that definitive answers will likely never come.

Please stay in touch with us.  This site is not just for those in the fight, we are also for supporting those left behind due to cancer taking their loved one.

Hugs,

Marie who loves kitties

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I am sorry you are here and seeing what you went throguh.  Love Kitties nailed many good points in all of this.  Ultimately you need to find your answers and resolution.  I have been in the posiiton of looking into medical malpractice when family members passed away.  There could be malpractice (not saying in this instance per se, but in general) and there is also a part of us who go through this as part of the grieving process.

You may want to speak to an attorney if that is what you need to get some closure and peace.  Basically you will need to have to prove causation and damages in what went on.  For instance, on the genetic testing, some places do it as a matter of course (and I think more on doing it as time goes on) and some others do not.  Even if you can prove, for example, that testing for MSS and KRAS should have been done (this seems to be something that is done often at this point), you would then need to prove causation and damage.  If your wife was MSI (which she was not) which could have led to treatments with immunotherpy that MAY have worked, the fact she was MSS means that treatment really does not work. (Though they had this information at the start, so it is an example).  So not having  MSS information (if test not done at the beginning) would not change the course of treatment that would have been followed.  Same thing applies to the other tests in terms of logic/how it could be looked at in determining negligence.

Going through some general things that are parallel to your situation (a bit)

My oncologist does not even test me for CEA anymore.  She did once when I asked when I went back on chemotherapy.  But it really is not going to change things.  (I am at Memorial Sloan Kettering)  

I have two spinal tumors now (they are rare from what I read for CRC, .5%-7% is the range) and the first one was missed or not mentioned on my PET scan from 7 months ago. We went back and looked, when it was mentioned on a spinal scan.  And we are watching are waiting for treatment on it until it causes symptoms or starts showing possible structual damage on a scan.  

My scans from January show some things are still growing, some may stopped and some may be dying.  But other than adding Avastin (which was intentionally withheld due to possibility of fistulas so close to radiation on my one spinal tumor they did see), we are continuing and will see what the next scan holds in a few weeks.  

I get chemo breaks of 6-10 extra days now and again for family things from the two oncologists I have had at Memorial Sloan Kettering.  

Some of my scans have contrast, others do not.  

I can keep on going through the rest of my experiences and point by point through what you posted, but I am not sure how much will be gained and some of the discussion can be a bit painful when done via a board on the internet, especially when dealing with life expenctencies and damages, as compared to speaking to someone face-to-face.

None of the above is meant to be legal or medical advice.  The only thing I would say is try to find a reputable lawyer if it will help put your mind at ease.

 

Butt's picture
Butt
Posts: 319
Joined: May 2018

Malpractice on a patient with stage for cancer who passed is almost impossible. It is a waist of time. She clearly wasn t responding well to chemo and some patients don t. Yes, for most of them chemo is stop working sooner or later. I am not going in details of those malpractice law issues but it is about that the doctor applied his/her professional judgement due to education, training, professional development, communication with other doctors. Other doctors who are kinda friends will testify that there are no violations and they could do the same thing. This is a long stressful process for all parties involved that usually ends that the doctor was correct, specifically with stage 4 cancer that is not curable. Butt. 

beaumontdave's picture
beaumontdave
Posts: 997
Joined: Aug 2013

I'm very sorry for your loss, it sounds like your wife had a very aggressive version of colon cancer, which also was quite resistant to treatment. I can't really comment on what they should or shouldn't have known by 3 rounds in on treatments. I had 12 of Folfox and it didn't stop the liver recurrances I had. The CEA test was useful for me, but some here don't get useful numbers from it. My blood tests, CT scans, PET scans, biopsies all had things like false positives, things that lit up that turned out to be nothing, negative results when it still was metastasis. Mine was a relatively slower cancer and yet there were a number of uncertainties, and a sense that they weren't moving fast enough on my part. I'm not going to make excuses because I don't know what the doctors should have known and when, I just know from mine and my late wife's experiences that doubt and uncertainty exist even with the best diagnostic tools and tests. I hope you get your answers and find some degree of peace.....................................................Dave

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

I'm so sorry to hear about your wife.  As far as the cancer, I've heard it can spread almost anywhere.  I'm hoping that you can get the answers you need.  I'm not an expert on this disease so I'm not able to help you with your question but can understand your concern and questions. 

Kim

the_widower
Posts: 3
Joined: Mar 2019

Someone who lives nearby is a Radiologist. That person looked at some of her medical imaging from August 2017, he diagnosed metastasis to her spine - which based on the date of the imaging, means he diagnosed it nearly a year before the oncologist and radiologists attenging to her treatment did. To their credit, the radiologist who interpreted the PET scan at the time did identify that area as suspicious and recommended a follow-up, but the oncologist wouldn't. Didn't. I have some choice words for him right now. As for the person who looked, we have differing opinions about one of the suspicious areas at the base of her skull, but that region isn't well-imaged. The person won't say there absolutely isn't something there. Just that it's probably normal brain uptake. Probably.

It's unclear whether diagnosing the spine met in a timely manner would have altered her treatment, I think it's pretty certain that catching the one brain met earlier (it was the size of a large Thompson grape - about 2 cm on a side) would have altered her treatment.

Two things are certain:

One: If that one large brain met had been caught sooner, there would have been more options for treating it and better health to tolerate and recover from those treatments; 

Two: had failing treatments been recognized as such in a timely fashion and had she been advanced to the next line of treatment sooner, it would have made her eligible for clinical trials significantly sooner. Five to six months sooner, by my estimation. Before the cancer and the chemo both took so much out of her. 

Her decline was gradual, until the brain mets were discovered. They stopped treating the primary cancer in order to radiate the brain mets, they never restarted the primary cancer treatment and that was the end. When the post-radiation anti-seizure meds ran out, she began seizing and had uncontrollable nausea, couldn't keep anything down when not in a hospital room with an IV drip of stronger anti-nausea drugs than they would send home with us.

Kazenmax's picture
Kazenmax
Posts: 357
Joined: Feb 2016

Nothing against hard working doctors but I have to believe they stick together. I had radiation during my treatment and it was so intense that it burned through my colon and thru my vagina. This is called a fistula. Not a pleasant situation at all. I spoke with my surgeon and was very distraught over it happening. I said how could he not know how deep the radiation was going? He asked if they did a CT Scan at the half way mark. I said no.... he quickly said well I’m sure it wasnt the radiology docs fault.

i felt like they just didn’t care. i Had to stop the radiation Half way thru So I don’t know how much it would have shrunk the tumor. 

But I guess I’m saying no matter what you think or feel was their negligence, you will have to work hard to find another doctor to say some other doctor did wrong. I hope you do. I’m so sorry this happened. I hope you get some satisfaction After all this heartache.

sending love and strength 

k

Emmett20
Posts: 5
Joined: Apr 2019

By halfway mark do you mean while you were getting radiation on that day or during the course of your entire treatment?  I will ask my doctor tomorrow how often scans are done and what they will do to minimize my chances of getting fistula. 

Kazenmax's picture
Kazenmax
Posts: 357
Joined: Feb 2016

yes midway through radiation. i Was scheduled to have one to check on how well the radiation was working.

Emmett20
Posts: 5
Joined: Apr 2019

My surgeon refers to this disease as a whack a mole game. Could things have been different-- absolutely.  I leaned from a group on Facebook about treatment options my physician never discussed.  Does this mean he was a bad doctor?  No not in the slightest.  You don't know what you don't know but unfortunately the patients need to advocate for themselves in order to get better more effective treatment.  Here are some things I have learned.  1. Go to a NCI hospital.  They have the most trials and the most patients with this disease therefore the most experience in treating patients like your wife.  2. Get genetically tested asap and not just for lynch syndrome.  There are specific trials right now that are just for people with genetic mutations. 3. Nobody can put an expiration date on you.  I never want to hear my chances because I will beat this beast.  The best thing you can do is let all your friends and family know to get screened and the earlier the better.  I have already saved one life due to my disease.  Take care of  your own health as well.  There is a group on Facebook for caregivers you may find helpful.  Hugs for you.

Subscribe to Comments for "Looking for answers"