What a pessimist

Lilmiss82
Lilmiss82 Member Posts: 257
So I met with my newer oncologist yesterday for a general check up on how I'm doing on the 5-fu. I felt brave and asked him what he saw as far as my future outlook and he stated that my current chemo is just to keep my current nodules in check and he doesn't see them disappearing. I am not nor will I be a surgically candidate. I told him I had different plan and that I will prove him wrong. I also asked if I'm not considered a surgical candidate because I have Kaiser and he said no, that I was receiving the standard care for my situation. Then I stated "really!? because I have heard that people in my situation when see at a major cancer center have been pick apart in order to rid them of the disease." He stated yes some cancer center are more aggressive but in regards to a cure the results are pretty much the same, the cancer will return. That really p***ed me off. Is he right?? I'm I never going to get rid of the nodules in my lungs?? Has anyone had lung involvement ( I have 3 confirmed nodules 2 other spots in question) and had them removed with cyberknife, RFA or any other procedure?? If I wanted to go outside my network (by that I mean outside of Kaiser) does anyone know of any program that will offer some type of finacial assistance program that can help?? I am 29 and feel that his pallative approach is a load of crap and really would love to hear what you all think.. I refuse to have him be right Thanks guys-Melissa
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Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Oh...
    Wow! Wish I knew more so I could offer you something constructive in the way of advice. What I CAN do is tell you I'll be praying for you.

    *hugs*
    Gail
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    tootsie1 said:

    Oh...
    Wow! Wish I knew more so I could offer you something constructive in the way of advice. What I CAN do is tell you I'll be praying for you.

    *hugs*
    Gail

    Gail
    Thank you so much. I really would appericate your prayers.
  • lisa42
    lisa42 Member Posts: 3,625
    what?!
    HI Melissa,

    With "only" 3 confirmed lung nodules and 2 in question, I can't believe your onc said that you aren't a candidate for surgery or cyberknife or anything. I have what they call "innumerable" lung nodules, meaning so many they can't count and in all parts of both lungs. So, that's why I refer to your 5 spots as "only". Do you know the locations of the nodules? If they are all in one lung or even mostly in one and a small part of the other,I don't see why you couldn't get thoracic (lung) surgery and at least a wedge resection or something. Or, if not surgery, maybe chemo could shrink them down and then you can focus on what's left.
    If I were you, I'd try to get another opinion from outside Kaiser, if possible. Is it possible to change your insurance so you can see other outside doctors?

    When I have gone for another opinion outside of my insurance up to Dr. Lenz at USC, my insurance did not cover it & I paid myself. It was worth it to me to get another opinion, especially of someone as expert as Dr. Lenz. Find out who the best oncs near your area are and try to pursue getting their opinions. I would not settle for what your onc said!

    Best wishes my dear-
    Lisa
  • thxmiker
    thxmiker Member Posts: 1,278
    Second Opinion
    Get a second opinion! That is my advice to everyone. (Especially any insurance that is their own hospital, they have to much self interest. As they say, It is the best insurance if you are healthy.) Check with the Wellness Community in your area. Saint John's and The John Wayne accept patients with hardship or funding issues.

    Just an idea. Cancer treatment has changed much over the last 10 years and quite a bit in the last 4 years!

    My prayers and thoughts are with you to find the best treatment available.
    Best Always, mike
  • Buckwirth
    Buckwirth Member Posts: 1,258
    Palliative
    does not mean just give up and die. Based on what you are reporting you need a new onc.

    Find the nearest research hospital and see what they recommend. Among other things, they may have a promising trial that you qualify for, or some other means to keep the costs down.

    At the very least, they give you information to take over the head of this guy, and maybe make a case for better treatment at Kaiser.

    Good luck,

    Blake
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    lisa42 said:

    what?!
    HI Melissa,

    With "only" 3 confirmed lung nodules and 2 in question, I can't believe your onc said that you aren't a candidate for surgery or cyberknife or anything. I have what they call "innumerable" lung nodules, meaning so many they can't count and in all parts of both lungs. So, that's why I refer to your 5 spots as "only". Do you know the locations of the nodules? If they are all in one lung or even mostly in one and a small part of the other,I don't see why you couldn't get thoracic (lung) surgery and at least a wedge resection or something. Or, if not surgery, maybe chemo could shrink them down and then you can focus on what's left.
    If I were you, I'd try to get another opinion from outside Kaiser, if possible. Is it possible to change your insurance so you can see other outside doctors?

    When I have gone for another opinion outside of my insurance up to Dr. Lenz at USC, my insurance did not cover it & I paid myself. It was worth it to me to get another opinion, especially of someone as expert as Dr. Lenz. Find out who the best oncs near your area are and try to pursue getting their opinions. I would not settle for what your onc said!

    Best wishes my dear-
    Lisa

    Hi Lisa,
    You amaze me!! I didn't know that you have numerous nodules in your lungs!! As far as the ones in my lungs I believe 2 are in my left lung one upper one lower and one in my right lung near the diaphragm. I've heard great things of Dr. Lenz and since I'm in Nor Cal he would be one of my top doctors I would love to get a 2nd opinion from. I do hope the 5-fu will kill these nodules but it's hard to tell right now since I've only had 1 cycle of 5-fu but my CEA has not moved from 2.8(which is scaring me) and I will not be scanned until June. I cannot change my insurance since I am unemployed and I am covered through my husband. Thanks for your concern and keep us posted one your natural approach. I too have began to build my immune system with the help of a naturopath. :) Melissa
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    Buckwirth said:

    Palliative
    does not mean just give up and die. Based on what you are reporting you need a new onc.

    Find the nearest research hospital and see what they recommend. Among other things, they may have a promising trial that you qualify for, or some other means to keep the costs down.

    At the very least, they give you information to take over the head of this guy, and maybe make a case for better treatment at Kaiser.

    Good luck,

    Blake

    Blake
    I will never give up and you should have seen the face of my oncologist when I told him I will prove him wrong!! :)He is my 3rd oncologist and thought going to him was going to be in my best interest but now I'm second guessing myself. I don't know if I could switch to another oncologist without them thinking I'm crazy:) I really do believe that a 2nd opinion is needed at this point. I just need to find a way to afford it. I live near Stanford and even considered MD Anderson in TX since I have family there. Anyways, thank you for your input -Melissa
  • luvmum
    luvmum Member Posts: 457
    Dear Melissa, seek 2nd opinion
    my mum's oncologist has different perspective who believes quality of life is more important. I did ask for 2nd opinion and constantly talk to her colon surgeon and seek her opinion too.

    I honor my mum's oncologist is an honest and kind person, she still goes to see him. He knows I'm the aggressive type and I know he is not, but it's ok, as long as my mum gets what is best for her. Even when the oncologist did not agree with her liver resection in March, she had a liver surgery end of March with the support of the colon and liver surgeons.

    you never know what is the end result as my mum was categorized as non-operable candidate!

    I will be praying for you too!
    Dora ((hugs))
  • MrsJP
    MrsJP Member Posts: 157
    My son is 28 yrs old, he was
    My son is 28 yrs old, he was dx 3/10 and had his first ct post ileo reversal. They found 3 nodules in his lungs. He meets with the oncologist Friday. I'll share whatever info he shares with me. (I'll be sharing this post with him)He feels he needs to protect me, as I'm having a hard time dealing with all this. I'm so sorry that you are going through all this, I feel so helpless, I wish I could offer you more sound advise. You sound as determined as my son. I wish you well.

    God Speed
    Jeanette
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    MrsJP said:

    My son is 28 yrs old, he was
    My son is 28 yrs old, he was dx 3/10 and had his first ct post ileo reversal. They found 3 nodules in his lungs. He meets with the oncologist Friday. I'll share whatever info he shares with me. (I'll be sharing this post with him)He feels he needs to protect me, as I'm having a hard time dealing with all this. I'm so sorry that you are going through all this, I feel so helpless, I wish I could offer you more sound advise. You sound as determined as my son. I wish you well.

    God Speed
    Jeanette

    Jeanette
    April 2009 age 27 when I was told I had stage IV rectal cancer. I know the concern you have for your son because I see it on my mothers face everyday. The best thing she has done for me is to be at my side and I know you are there for you son too. Sometimes I tell her half the truth regarding my illness to protect her ( I couldn't even tell her I had cancer my sister broke the news) just like your son:) everyone always says that my age is my biggest advantage since the younger ones bounce back quicker just keep that in mind. If your son ever wants to talk I'm here, if not just let him know he is not alone. Your son, you and I are all gonna be ok somehow some way we will pull through:) keep me posted on the upcoming appointment- Melissa
  • Dean22
    Dean22 Member Posts: 12
    Lilmiss82 said:

    Jeanette
    April 2009 age 27 when I was told I had stage IV rectal cancer. I know the concern you have for your son because I see it on my mothers face everyday. The best thing she has done for me is to be at my side and I know you are there for you son too. Sometimes I tell her half the truth regarding my illness to protect her ( I couldn't even tell her I had cancer my sister broke the news) just like your son:) everyone always says that my age is my biggest advantage since the younger ones bounce back quicker just keep that in mind. If your son ever wants to talk I'm here, if not just let him know he is not alone. Your son, you and I are all gonna be ok somehow some way we will pull through:) keep me posted on the upcoming appointment- Melissa

    Lilmiss82
    I was diagnosed with colorectal cancer on 12/18/10. At first they thought my cancer was confined to the colon; however, a second CAT scan showed 2 small lung nodules. My doctor ordered a PET Scan that shows uptake to help better identify potentially cancerous cells.

    The results did suspect lung metastasis. They performed VATS lung surgery to remove the two small nodules that testing proved cancerous. I then went through 6 Folfox with Avastin treatments and had a new PET Scan last week. Results showed no cancer in any organs or the lymphatic system. It also showed a 70% reduction in the size of my primary tumor.

    I am now scheduled to begin 5 weeks of radiation along with an oral chemo 5-FU pill. They hope this treatment will shrink the rectal tumor to nothing but scar tissue. After an 8 week break from radiation, I will then have surgery to remove my primary rectal cancer tumor.

    I am being treated at a large university research cancer institute that is NCI certified. I believe this makes a difference as they are cutting edge in treatment and willing to try many different things. My oncologist has a dry personality, but is a leader in research in this area. I figure, I don't need him to be my best buddy but I can rely on his experience in knowing the best treatments out there. Take care and best of luck.
  • pepebcn
    pepebcn Member Posts: 6,331
    Dean22 said:

    Lilmiss82
    I was diagnosed with colorectal cancer on 12/18/10. At first they thought my cancer was confined to the colon; however, a second CAT scan showed 2 small lung nodules. My doctor ordered a PET Scan that shows uptake to help better identify potentially cancerous cells.

    The results did suspect lung metastasis. They performed VATS lung surgery to remove the two small nodules that testing proved cancerous. I then went through 6 Folfox with Avastin treatments and had a new PET Scan last week. Results showed no cancer in any organs or the lymphatic system. It also showed a 70% reduction in the size of my primary tumor.

    I am now scheduled to begin 5 weeks of radiation along with an oral chemo 5-FU pill. They hope this treatment will shrink the rectal tumor to nothing but scar tissue. After an 8 week break from radiation, I will then have surgery to remove my primary rectal cancer tumor.

    I am being treated at a large university research cancer institute that is NCI certified. I believe this makes a difference as they are cutting edge in treatment and willing to try many different things. My oncologist has a dry personality, but is a leader in research in this area. I figure, I don't need him to be my best buddy but I can rely on his experience in knowing the best treatments out there. Take care and best of luck.

    Mel! don't understand at all! Did you had a CT since you ere
    back on chemo? if not how does he knows there is no shrinkage ? Does not he give a chace to chemo makes it desapear or shrink enough to can be treated with radi, cK,or surgery? are you having just 5 fluoracil? not something stronger like folfiri or folfox?.
    Hugs dear but I really seriously would consider a second op in a leading cancer hospital! if you can!.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    pepebcn said:

    Mel! don't understand at all! Did you had a CT since you ere
    back on chemo? if not how does he knows there is no shrinkage ? Does not he give a chace to chemo makes it desapear or shrink enough to can be treated with radi, cK,or surgery? are you having just 5 fluoracil? not something stronger like folfiri or folfox?.
    Hugs dear but I really seriously would consider a second op in a leading cancer hospital! if you can!.

    I basically get the same
    I basically get the same feeling from my onc. I don't have mets to my liver or lung. He seems to focus on what the microscopic cells will do, things that are too small for for imagining to pick up.
  • lisa42
    lisa42 Member Posts: 3,625
    Lilmiss82 said:

    Hi Lisa,
    You amaze me!! I didn't know that you have numerous nodules in your lungs!! As far as the ones in my lungs I believe 2 are in my left lung one upper one lower and one in my right lung near the diaphragm. I've heard great things of Dr. Lenz and since I'm in Nor Cal he would be one of my top doctors I would love to get a 2nd opinion from. I do hope the 5-fu will kill these nodules but it's hard to tell right now since I've only had 1 cycle of 5-fu but my CEA has not moved from 2.8(which is scaring me) and I will not be scanned until June. I cannot change my insurance since I am unemployed and I am covered through my husband. Thanks for your concern and keep us posted one your natural approach. I too have began to build my immune system with the help of a naturopath. :) Melissa

    Dr. Lenz
    Hi again Melissa,

    Just a word on going to try to see Dr. Lenz... first of all, he does answer pretty quickly to emails ([email protected]). Don't pester him with lots of questions (I once did that and he got annoyed, understandably), but if you state your case and situation and your desire to get in to see him as soon as possible, he will probably answer you very quickly and give you the contact person and number to make an appt. He literally answered my email within a day when I first contacted him in Feb 2010. I had first gotten the name/contact # for his appt setter & I was told I couldn't get in for another month and a half. That's when I got his email address from a friend who had been to him- after writing to him, he replied and was able to get me in within a week. The cost if you are paying cash to go there, as I did, was about $300 total. Part of that was the "hospital fee" to USC and it was around $125 I think to actually see Dr. Lenz.
    He has a thick German accent and kind of scared me when I first went to him, but he is very, very knowledgeable on all that is the latest. The next time I went to him, he was more jovial and did not scare me at all. Just letting you know so you're not thrown off by him if you see him and he is kind of stern acting.
    He is the one who recommended my current chemo treatment of Gemzar (combined w/ Xeloda or 5FU and avastin). I don't know what I'd be doing right now if I had never gone to him and gotten this recommendation, considering that I've used up all the standard treatments and don't currently qualify for clinical trials. So, I do feel that Dr. Lenz has been very valuable to me.

    Glad to hear you're also working with a naturopath too, by the way!
    Don't give up on getting another opinion- I really feel it is vital for you. If you can't afford to get treatment with Dr. Lenz after you see him, maybe he can do what he did for me- write up a letter with his recommendations to take back to your regular onc, if you have to stay with that same onc.

    Best wishes!
    Lisa
  • sasjourney
    sasjourney Member Posts: 395
    Find a new doc!
    Hi Melissa,

    I am sorry that your doc is so pessimistic and not offering a better treatment plan. Try to get another opinion from a major cancer center. I agree with Lisa and highly recommend Dr. Lenz at USC. He has a plan and doesn't follow the book if he thinks there is a better way. I follow his recommendations and get my treatment near home. My onc. is learning a lot from Dr. Lenz! I know you will never give up and you shouldn't...there are many success stories out there. Also, UCSD is highly regarded and I have heard great things about some of the docs there.

    I am praying for you and wishing you the very best.

    Hugs,
    Sara
  • plh4gail
    plh4gail Member Posts: 1,238
    I would feel the same. I
    I would feel the same. I have no intentions of being complacent and accepting a so so diagnosis and I expect the same from my oncologist or surgical Dr. You, I and all the others here have put in valient efforts not to settle for a passive diagnosis. Thinking of you Melissa

    Love and hugs, Gail
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    pepebcn said:

    Mel! don't understand at all! Did you had a CT since you ere
    back on chemo? if not how does he knows there is no shrinkage ? Does not he give a chace to chemo makes it desapear or shrink enough to can be treated with radi, cK,or surgery? are you having just 5 fluoracil? not something stronger like folfiri or folfox?.
    Hugs dear but I really seriously would consider a second op in a leading cancer hospital! if you can!.

    Pepe
    How are you doing?? I am on 5-Fu no avastin no oxy. My oncologist wants to save the big chemo for later down the road. If 5-Fu stops working then he'll change it up. He doesn't think they will shrink they are pretty small no bigger than 2 mm but he believes they will just stay small and not grow because that's what happens to people in my situation in his opinion. I do need a 2 nd opinion or just an oncologist who's not so negative:)
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    smokeyjoe said:

    I basically get the same
    I basically get the same feeling from my onc. I don't have mets to my liver or lung. He seems to focus on what the microscopic cells will do, things that are too small for for imagining to pick up.

    Hi smokeyjoe
    From the get go this oncologist stated that I will never be cancer free because it's in my blood. It's so annoying. Sometimes I think doctors think they know everything and forget we are individual patients, with different needs different outcomes. They have a way of grouping cancer patient outcomes and will never look past that. Sorry superhuman doctors I will not be a statistic! So smokeyjoe where do we find the good docs?
  • Lilmiss82
    Lilmiss82 Member Posts: 257

    Find a new doc!
    Hi Melissa,

    I am sorry that your doc is so pessimistic and not offering a better treatment plan. Try to get another opinion from a major cancer center. I agree with Lisa and highly recommend Dr. Lenz at USC. He has a plan and doesn't follow the book if he thinks there is a better way. I follow his recommendations and get my treatment near home. My onc. is learning a lot from Dr. Lenz! I know you will never give up and you shouldn't...there are many success stories out there. Also, UCSD is highly regarded and I have heard great things about some of the docs there.

    I am praying for you and wishing you the very best.

    Hugs,
    Sara

    Hi Sara
    Thank so much for your response. Lisa and you have such great things to say about dr Lenz that I'm calling and emailing him today:)
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    plh4gail said:

    I would feel the same. I
    I would feel the same. I have no intentions of being complacent and accepting a so so diagnosis and I expect the same from my oncologist or surgical Dr. You, I and all the others here have put in valient efforts not to settle for a passive diagnosis. Thinking of you Melissa

    Love and hugs, Gail

    Gail
    You are so sweet and kindhearted. Thank you