Reeling from bad news...seems like my Doctor gave up on me

KarenMG
KarenMG Member Posts: 109
in Colorectal Cancer #1

My story is typical I guess. After a couple of years of mysterious miscellaneous stomach and intestinal symptoms, I finally decided to have a colonoscopy that I had put off. I am 62, that was over a year ago in September. Low and behold, they found a mass and said it looked like cancer. I was pretty shocked and immediately felt an impending sense of doom. Saw a surgeon fairly soon who examine me rather extensively in his office and said it looked like cancer and laid out a plan for surgery, chemo, radiation and etc. Not necessarily in that order. I was in shock once again. His exam was close to what I would call medieval torture. Between that and my perception of him, I decided that a different surgeon was definitely called for! I did find a really good surgeon who also seemed very caring and not so overly aggressive. He was in the OR where it counts. Surgery was done to remove about 13 inches of my colon and the reconstructive work they do, it was a "big" surgery. I'm sure the worst surgery that I've ever had and that's saying a lot.

Long story short, I ended up seeing 3 different Oncologists before I chose one, there was mass confusion about my prognosis. One doc said I didn't even need chemo or radiation, next doc said immediately I needed to start radiation then chemo, he was not very optimistic at all about my situation. Final Dr that I am with now is very intelligent and was more optimistic about things. Anyhow, here I am about a year later, post radiation and what chemo I could tolerate. I practically melted down, had symptoms of a stroke with oxaliplatin so only got 5 FU and Leucovorin. Had trouble tolerating any of it and missed 2 treatments but went back to make up one. I blame myself for all the delays due to difficulty finding a doctor I could feel good about and even accepting and agreeing to have any of the treatments period!!! I knew that I have a cranky body and that I would not tolerate chemo well.

A CT scan in February showed two tiny spots on my liver and then after chemo they were gone. I was then diagnosed with Stage 4 with mets to Liver. So my last scan was bad, CEA was up and then scan showed about 10% of my liver to be affected. I don't know if that is bad or good. Funny thing is, which might explain my crankiness with the docs is that I am a retired RN but I feel absolutely ignorant about all this. Haven't worked in 10 years and feel like I know nothing about oncology and how cancer progresses. However I know too much about general illness, enough to make me in a total panic about what might happen to me shortly.

So on the phone 2 weeks ago, my Doctor said I may possibly on have 4-6 months, if I do no further chemo. He called regarding possible immunotherapy that might be available for me and they sent tissue samples off to find out if there is anything out there for me. So far there is nothing that he knows of. Pretty devastating news. I did ask him to tell me what my prognosis is because he has seemed very reluctant to tell me. Next week I seem him to discuss the results of the tissue match for treatment. I forgot the name of the test.

For sure my anxiety is out the roof, my family is freaking out and I feel very lost. I have not felt supported by my doctor and his team. So now it is decision time, whether to do further treatment, especially chemo and lose my hair. Be sick the rest of my life and possibly ending my life with the chemo sooner than if I got no treatments. I don't handle medications well and I feel sure it will be the same thing IF there is an immunotherapy available. As a nurse I worked with many cancer patients through Hospice, I've seen the worst of it all. I never wanted to do chemo, ever. However, I am willing to try treatment if it is not debilitating, but of course I won't know that until I get into it. It's all super scary and frightening. I don't know how I'm going to make this decision. I'm single but have two sons. One cannot even hear about what is happening with me. One sister that is also struggling with it. It's all on me to decide, no one is going to help me. I have had to start taking Ativan, I have nausea a lot anyhow and it helps that. I took it in the past and spent years withdrawing from the effects but now...what difference does it make? I have to have help somewhere.

Sorry to sound so pathetic but this is the first time I have really said all this and I just needed to get it out. I know this site is great for support, the few times I have been here. Thanks to all that have supported me here and would love to hear any thoughts or suggestions.

Karen

 

 

 

 

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Comments

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited December 2017 #2
    Karen, please don't give up

    So sorry to hear of your situation.  None of us can really make your decisions for you,  but I'd like you to believe there is hope. My only experience with chemo was Xeloda this past summer.  I can tell you that was no way to live.  I have liver Mets too and have chosen alternative therapies for now.  I am comfortable and feel pretty darn good every day.  

    I hope you can find peace in whatever path you choose.  And I also believe no one can tell you exactly how many months or years you have left.  Prove that doctor wrong! Praying for you and peace for your family too. 

    Beth

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #3
    This site is exactly for the

    This site is exactly for the feelings and struggles you're expressing, and as always, we're sorry you need this place, but welcome a chance to be your sounding board, share what we know, and listen to all the things that the rest of the world won't or can't hear. It's frustrating that the onc's are so all over about your treatments and prognosis. If it's all in the liver there's a few treatments that involve inplanting chemo or radiated spheres directly into it, one procedure called Y-90, which could bypass some of the bad reactions you've had. Those who've had such treatments could better speak to them, but you didn't say they were ruled out, so there are options. Since my colectomy and subsequent liver surgeries had removal as the main option, it was an easy series of decisions for me, but people here with their experiences confirmed my choices and clarified my situation way better then friends or family could have. The Ativan makes sense, I made use of Xanax, and thought it a big help with stressful moments and doc/lab appointments. Ultimately it doesn't sound like you're getting all the options offered to you. and it leaves me believing you should get to a cancer center that will be more aggressive on your behalf.....................Dave

  • KarenMG
    KarenMG Member Posts: 109
    #4
    Thanks to you both. You are

    Thanks to you both. You are exactly right Dave, I've been offered exactly zero options at this point. I did casually look on the website of a cancer center in Atlanta to find any type of treatment options. I found one including immunotherapy and chemo. I mentioned this briefly to my doctor in the last phone conversation. He said, well you can forward that info to me if you like. Hmm. So I have not yet met with him to hear the results of the tissue sampling/matching, whatever it is. If he offers me nothing then I have to wonder why. Is it that he feels I have no hope? This is why I stated that.

    Lack of communication with both the doctor and nurses, unreturned calls. Consistent delays. All the weeks of postponed treatments. Makes me wonder if this has hurt my case. So in the upcoming appt with the doctor, if he offers no options or treatments that sound hopeful, I don't know how I will make the decision to go with chemo that will make me sick 24/7. I was hoping for immunotherapy options. However, the nurse has failed to call me with a new appointment time. This is how it goes with these people. My doc is incredibily busy but still. I'm just super frustrated.

    Thanks again to you both. All I know to do is carry on and try to live what life I have left and pray.

    Karen

     

     

  • Bellen
    Bellen Member Posts: 281 Member
    #5
    Options

    Hello Karen - Sorry to hear of your current situation.  I have also found that too much cancer care progresses much slower than it should - when someone has a cancer diagnosis, THE WAIT for results, doctor appts, tests, phone calls returned, information, etc is just way too long, and often makes me feel like I am "self doctoring" because it's my only option.  Right now, I feel I am in this position - looking things up on the net, etc.  Cancer clinics should realize the stress this puts on a patient.  And when you don't feel that well, it makes only worse.  I have multiple liver mets, and have had irinotecan (folfiri chemo) and avastin.  I don't know if this is a chemo that you could tolerate.  Wishing you all the best.

  • Mikenh
    Mikenh Member Posts: 777
    edited December 2017 #6
    You might take a look at TIL

    You might take a look at TIL therapy at NCI. It appears that MD Anderson is doing some kind of trial with this technology as well.

    https://clinicaltrials.gov/ct2/show/NCT01174121

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #7
    Unpredictability

    Karen:

    There are countless stories of people who lived well, and well beyond the doctor's prediction, despite the diagnosis.  I am not in your shoes, but I understand your frustration.  The medical community pushes chemo as the only solution, but its effects are horrible for most.  I know that I may face a stage 4 diagnosis at any time, and I am not sure how I will elect to treat it, but at this point in time I do not think I would accept the compromises the current chemo approach requires.  Hopefully others who have more knowledge will share their perspectives with you.  But please be assured, we understand your predicament and are on your side.

  • Mikenh
    Mikenh Member Posts: 777
    edited December 2017 #8
    Mikenh said:

    You might take a look at TIL

    You might take a look at TIL therapy at NCI. It appears that MD Anderson is doing some kind of trial with this technology as well.

    https://clinicaltrials.gov/ct2/show/NCT01174121

     

    1. What kind of cancer are

    1. What kind of cancer are you studying?

    We are currently treating patients with the following metastatic (Stage IV) cancers:

    2. Who can participate?

    The ideal candidate is between the ages of 18 and 70, and is essentially healthy and active with normal heart, kidney, liver, and lung function. A list of inclusion and exclusion criteria for each protocol can be found at clinicaltrials.gov.

    Certain clinical conditions (e.g. biliary stents, infection, bowel obstruction, bleeding) can increase complications during treatment and will make potential participants ineligible for an initial screening visit.

    Our trials are not for newly diagnosed early stage cancer patients – they are strictly for patients with disease that has not been controlled by at least one standard treatment. Please discuss your unique clinical situation with your oncologist or oncology team.

    3. What is adoptive cell therapy? Is it different from immunotherapy?

    Adoptive cell therapy is one form of immunotherapy. Immunotherapy is a field of cancer treatment that utilizes your body’s own immune system to attack your cancer, and research is ongoing in many different ways to enhance that attack to make tumors go away. The underlying idea is that your body has immune cells capable of destroying your tumor under the right conditions.

    4. What are the specifics of adoptive cell transfer?

    For most patients, adoptive cell transfer starts with an operation at the National Cancer Institute. By removing one of your tumors, we are able to find and grow the immune cells that live there, known as tumor-infiltrating lymphocytes or TIL. We will grow and study TIL from your tumor in our labs.

    For patients with metastatic melanoma, this process may take three to four weeks. For all other patients, that lab process sometimes takes three to four months, during which time we coordinate care with your home oncologist.

    With your permission, our referral team may request samples of your tumor to test for certain proteins of interest.  For cancers expressing those proteins, patients with certain blood typing (HLA) can be treated without the need for an operation. We perform a large blood collection (called an apheresis) and genetically engineer your white blood cells to recognize those targets.

    If you are eligible for a screening appointment, our staff will discuss the specifics of each protocol in detail at the time of your clinic visit.

    All of our protocols require an inpatient stay of approximately three weeks at the NIH Clinical Center in Bethesda, MD. The treatment regimen consists of chemotherapy, cells, and supportive immune medications.

    https://ccr.cancer.gov/sb-faqs

  • KarenMG
    KarenMG Member Posts: 109
    #9
    Thanks Sandia, Mike and all.

    Thanks Sandia, Mike and all. I know that I am not the only one dealing with the frustrations. I"m sure others feel like I do, it feels like you are the only one brushed aside or put off.

    Sandia I wish you the best! Mike, I looked into MD Anderson, I had planned to go there if ever I found myself in this situation but found out that they do not take my insurance and self pay would be incredibly expensive. I may still consider it.

    You all are wonderful and I'm so sorry that you are facing this demon as well. :(

    Karen

  • Mikenh
    Mikenh Member Posts: 777
    edited December 2017 #10
    KarenMG said:

    Thanks Sandia, Mike and all.

    Thanks Sandia, Mike and all. I know that I am not the only one dealing with the frustrations. I"m sure others feel like I do, it feels like you are the only one brushed aside or put off.

    Sandia I wish you the best! Mike, I looked into MD Anderson, I had planned to go there if ever I found myself in this situation but found out that they do not take my insurance and self pay would be incredibly expensive. I may still consider it.

    You all are wonderful and I'm so sorry that you are facing this demon as well. :(

    Karen

    You might try talking to NCI

    You might try talking to NCI directly. I believe that they are a Federal Agency but I don't know how they charge people. There is a lady on the Colon Talk forum with username sleen and she has gone through it. Her husband's username is dh2sleen and he sometimes posts about the technical details of what was done. He seems to be the best source on this stuff informally and he keeps up with the trials. His wife made a remarkable recovery from her stage 4 cancer with their immunotherapy approach and she's somewhat of a celebrity in the cancer world now.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited December 2017 #11
    It's a Very Hard Decision

    I'm sorry to hear all that you have gone through and that you feel like everyone has given up on you.  I'm also sympathetic to the fact that the treatment has caused you so much discomfort and tummy troubles.  There are many meds that can help when you feel sick to your stomach so maybe you might want to explore that issue if you decide to go forward with treatment.  It's a hard decision to make and this has to be your personal decision.  I'm praying for the best.

    Kim

  • KarenMG
    KarenMG Member Posts: 109
    #12
    Mikenh said:

    You might try talking to NCI

    You might try talking to NCI directly. I believe that they are a Federal Agency but I don't know how they charge people. There is a lady on the Colon Talk forum with username sleen and she has gone through it. Her husband's username is dh2sleen and he sometimes posts about the technical details of what was done. He seems to be the best source on this stuff informally and he keeps up with the trials. His wife made a remarkable recovery from her stage 4 cancer with their immunotherapy approach and she's somewhat of a celebrity in the cancer world now.

    Wow!

    Thanks, that is very interesting and wonderful to hear. I need to look into that. I've pretty much told my sons to prepare themselves. Not a conversation I was ready to have but it is what it is...

  • KarenMG
    KarenMG Member Posts: 109
    #13
    Annabelle41415 said:

    It's a Very Hard Decision

    I'm sorry to hear all that you have gone through and that you feel like everyone has given up on you.  I'm also sympathetic to the fact that the treatment has caused you so much discomfort and tummy troubles.  There are many meds that can help when you feel sick to your stomach so maybe you might want to explore that issue if you decide to go forward with treatment.  It's a hard decision to make and this has to be your personal decision.  I'm praying for the best.

    Kim

    Thank you Kim

    You are very kind! My last chemo tx was on November 2nd but I continue to have nausea with stomach cramps and diarrhea. Also Extreme fatigue and feel very depressed and apathetic. No surprise considering the bleak picture my doc painted. I am going to try to be hopeful that there will be a treatment out there for me and continue to fight. I'm not ready to give up!

    Karen

  • zx10guy
    zx10guy Member Posts: 273 Member
    #14
    Mikenh said:

    You might try talking to NCI

    You might try talking to NCI directly. I believe that they are a Federal Agency but I don't know how they charge people. There is a lady on the Colon Talk forum with username sleen and she has gone through it. Her husband's username is dh2sleen and he sometimes posts about the technical details of what was done. He seems to be the best source on this stuff informally and he keeps up with the trials. His wife made a remarkable recovery from her stage 4 cancer with their immunotherapy approach and she's somewhat of a celebrity in the cancer world now.

    NCI is a federal agency.  It

    NCI is a federal agency.  It's a sub institute under NIH (National Institutes of Health) which is under the larger HHS (Health and Human Services) agency.  NCI is the largest NIH institute with funding to match.  Joe Biden's Moonshot initiative is targeted for NCI to accelerate cancer research.

    If you are accepted by NCI for patient consultation/treatment, all expenses are paid for by the institute.  In exchange, since many of the treatments are experimental or they are gathering data for research, you're allowing yourself to be their test subject.  I consulted with one of their CRC specialists last year where they reviewed my medical records and they initiated the shipment of my tumor stored at the hospital/pathology department for them to re-examine the tissue.  Their report just confirmed what the initial pathologist had concluded.

  • zx10guy
    zx10guy Member Posts: 273 Member
    #15
    Karen, I've stated to others

    Karen, I've stated to others who have liver involvement where their current medical team has pretty much reached the end of what they can do is to consult with Dr. Nancy Kemeny at MSKCC in NYC.  She has been able to get patients where there was no more treatment available to the point where they were resectable.  She developed the protocol we all now use which is the addition of Oxaliplatin with 5FU to create FOLFOX.  She has also pioneered the HAI pump which sends chemo directly into the liver.

    There is another option which you can private message me to get more details.

  • Mikenh
    Mikenh Member Posts: 777
    #16
    zx10guy said:

    NCI is a federal agency.  It

    NCI is a federal agency.  It's a sub institute under NIH (National Institutes of Health) which is under the larger HHS (Health and Human Services) agency.  NCI is the largest NIH institute with funding to match.  Joe Biden's Moonshot initiative is targeted for NCI to accelerate cancer research.

    If you are accepted by NCI for patient consultation/treatment, all expenses are paid for by the institute.  In exchange, since many of the treatments are experimental or they are gathering data for research, you're allowing yourself to be their test subject.  I consulted with one of their CRC specialists last year where they reviewed my medical records and they initiated the shipment of my tumor stored at the hospital/pathology department for them to re-examine the tissue.  Their report just confirmed what the initial pathologist had concluded.

    Thank-you for your

    Thank-you for your explanation of their funding.

  • PamRav
    PamRav Member Posts: 348 Member
    #17
    After my last chemo

    it took a good 3 1/2 months before I felt normal again.  I developed all kinds of stomach issues after the chemo ended.  i also had a good deal of tiredness which has be very slowly subsiding.  So what you’re feeling post chemo mirrors how I felt.  Listen to your body rest and eat whatever feels good to you.  Do your best to channel some positive energy.  

    Lots of good advice here for you. 

    Good luck with your treatment.  

  • zx10guy
    zx10guy Member Posts: 273 Member
    #18
    Mikenh said:

    Thank-you for your

    Thank-you for your explanation of their funding.

    No problem.  NCI not only

    No problem.  NCI not only gets funding through the Federal budget, they also get funding through grants and donations.  

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #19
    We tend to treat the

    We tend to treat the oncologists/surgeons we engage as the pinnacle and ultimate word on our conditions,  future expectations and options. When my metastasis showed up as a lesion in my liver, I'd been previously assured by my onc/surgeon that it was an easy fix, he smiled and chuckled that the stuff was in there at the start, before the chemo,  small and slow, so slow he said let's wait three months and scan again. Three months and a PET scan later, he was very serious when he showed me a pic and said "you have mets, here, here, and here, what do you want to do?" I almost freaked, containing myself enough to say "I want it the hell out of me". He nodded and said "Yeah, it seems to come back with using chemo or radiation". This was the head of department, top oncologist/ hepatologist, and highly respected, asking me what to do? We set a surgical date, but I left there devastated, feeling hopelessly trapped by a man who's casualness about my life-threatening condition was incredible and shocking. Since it was surgery and I wanted action soonist, I stayed with him, plus my next pre-op meeting was with the associate doctor/surgeon, and she was as wonderful as he was callous, restoring my hope and sense of being taken care of. I rode it out, had one more resection three years later, and am NED for over three years, feeling good enough to fix the big hernia leftover, now healing from that. I think my point is most of us have hit that wall where we're out of options and/or the one we hoped to save us, turns out to be flawed and devoid of empathy for the raging anxiety we feel. I held on and hoped that my surgeon's skill was way better then his ability to give me hope, but had my situation been a little more complicated, or my doctor's second less skilled at reaching me emotionally, I'd sure be searching for options and empathy, even if the optimism was beyond the facts. Truth is important, treatment is important,  but hope sometimes is the only thing carrying us and I'd want to find those who could offer at least some of that..................................................Dave

     

  • bridon50
    bridon50 Member Posts: 1
    #20
    Karen -- Multi-Disciplinary Clinics - Don't give up!!!

    Karen,  

    1. What did you do after February's CT scan showed tumors were reduced?  

    2. did you have any surgery after chemo? 

    3. Have you gone to any Multi-Disciniplinary Clinics?  MD Anderson, Sloan Kettering and Johns Hopkins all have very solid Clinics. They will have an Oncologist, Radiation Oncologist, Liver and colorectal surgeon all together to review your case.  It is a wealth of knowledge and may help tremendously. 

    My best friend has stage 4 with mets to the liver.  We also got such different opinions (one told us there was nothing that could be done and had maybe a year) -- but then we went to Johns Hopkins MDC (Multi-Disiplinary Clinic).  He needs 2 surgeries one to remove the liver tumors and the other to remove any area in the colorectal area that had cancer so it doesn't return. 

    Hope this sheds some light on this awful time. Keep us updated!

    Sue 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited January 2018 #21
    KarenMG said:

    Thank you Kim

    You are very kind! My last chemo tx was on November 2nd but I continue to have nausea with stomach cramps and diarrhea. Also Extreme fatigue and feel very depressed and apathetic. No surprise considering the bleak picture my doc painted. I am going to try to be hopeful that there will be a treatment out there for me and continue to fight. I'm not ready to give up!

    Karen

    Opinion

    I'm sure others have suggest this as well, but please get a second opinion or third.  Don't let a doctor treat you as if you "don't matter".  There are other doctors out there that are more caring.  You shouldn't have that many tummy troubles due to chemo being it was back in November.  Please see if there is something else going on.  Please also keep us updated.

    Kim

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