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What a pessimist

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Thank you so much. I really would appericate your prayers.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again Melissa,

Just a word on going to try to see Dr. Lenz... first of all, he does answer pretty quickly to emails (lenz@usc.edu). 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

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

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

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Thank you for those recommendations. I will definately look into those ideas. You made me laugh when you wrote "As they say, It is the best insurance if you are healthy." :)-Melissa

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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
Posts: 457
Joined: Dec 2010

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
Posts: 157
Joined: Jan 2011

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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
Posts: 12
Joined: Feb 2011

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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
Posts: 1428
Joined: Feb 2011

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.

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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:)

sasjourney
Posts: 395
Joined: Jul 2010

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

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

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:)

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

You are so sweet and kindhearted. Thank you

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Thank you so much for sharing the cost to see dr. Lenz. I was curious but didn't want to ask because I didn't want to sound rude or intrusive. You have made me realize that a 2 nd opinion from him is within my budget and I am one step closer to better news:)

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I am stage IV..... huge tumor in colon that penetrated the colon wall...missed all nodes but that of course put it in the bloodstream. Sent 4 mets to my liver and 15 to all areas of my lungs.... put on Folfiri with avastin...6 months later....ALL GONE IN BOTH AREAS!!!... A few moths after that 1 reappeared in my lung ...it was not killed of by chemo so I had Cyberknife and zapped that sucker riht on outta there!.. I have been NED since Oct,2010 but now CEA rising and I am sure another fight is brewing... all in the LIFE.... yes LIFE of a stage IV patient...... I have been told too no surgery...WRONG...and no cure..... that don't bother me... Cancer can share my body if thats the way it HAS to be.... I just will not allow it to take over my body! Best to you!

Jennie

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I love, love, love you profile picture!:) Thanks for your story it what I need to hear. I'm beginning to wonder if I should add heavier chemo to the mix rather than wait until my Ct in June to see what the 5-Fu is doing.Never done Folfiri and honestly it scares the crap out of me:) Keep us posted on your plan for that rising CEA, I read your post but felt I didn't have any good advice to offer. I was quite puzzled by your situation. I'm rooting for you! :)Melissa

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

If you do go to MD Anderson and don't like what you hear, turn you wheel North on I-45 and drive 260 miles to UT Southwestern....we were just promoted to an NCI status....we're the MD Anderson or North Texas now:)

I'll be waiting for you with a giant Texas hug!

I don't like what your onc was telling you - at 29 you deserve someone whose going to be agressive, not passive. Palliative is not for you at this age. Keep all of your options open. i've just got to think that RFA or CyberKnife would eventually be an option for you.

You're feisty so use that energy to your advantage. You're in the hunt so don't ever think that you're not.

-Rocko

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Thank you if I head over to Texas I will have to track you down:) And I agree I need an agressive doctor, and when I signed on to him I thought that was what I was getting. Silly me!! :) It's gonna be socal or Texas at this point. I'll keep you guys posted

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

is very different than hers before she had such good results with chemo! So it demonstrate there is some problems of communication with your doc.
Why don't you explain him the many success here with chemo?.
Just cheer up, such small spots shouldn't be a big deal to you!. believe me ,this doc is telling you the opposite that most of our docs are saying , try to get this second opinion asap!.
Just keep all the hope, I'm sure this has an easy solution.
Hugs!.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

3 confirmed and 2 maybes..... I met a guy in the center I go to that had a lung transplant and is doing fine. He was 72, although his color was pale he said he felt fine as frog hair...This center has a surgeon that does lung transplants...So my question is this...Why would anyone make that statement when transplant is available and especially to someone as young as you. Maybe there is something I missed for you not to be a candidate for a transplant if nothing else. There are always options...always....Im not blaming or blasting anyone for their protocol but when it comes to this type of event I will exhaust all options before I say ..well, ok........good for you sissy girl, I will pm you his name and place of practice...........Love and Hope to ya buzz

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey Melissa, just to let you know I've been on Folfiri since Feb., so far not too bad, bit of fatigue, drippy nose. I've had the runs basically since the colon surgery,prior to starting any chemo., this has eased up a lot recently with probiotics etc., and I suppose just learning what to stay away from, no more Jalapino peppers. But, I'm working during the day, coming home, doing the mom things, making dinner, laundry, etc. If it wasn't for the friggen infusion days my life would be back on track. Damn cancer, why??? I actually have more stamina and am more active than other "healthy" people in our office. You are the second person to say Folfiri gives them the creeps, I think Gail made the same comment....you must have heard something about this regime that I don't know about yet. Now you've got me wondering!!!

crazylady
Posts: 544
Joined: Jun 2004

Hi Buzz,
I am interested in any information you have about someone having a lung transplant for cancer. I just asked my oncologist a couple of weeks ago about this possibility, but he didn't seem to think it was possible. He said that it would be difficult to find lungs and also that the anti-rejection medication could cause cancer to flourish if there were any microscopic cells left in my body.
If you have any information you can share I would appreciate it.
Thank You,
Jamie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry to read your story, i read all the replies here, seems like they have so much hope.
maybe your onc is the glass half empty type of type. just at the hope in jennie and sundances stories. I hope you surprise the pants off your onc. tell him hope, love, peace and fellowship are free, or at least affordable here. they will be your greatest assets and you have found the place where they exist in abundance.

is your photo of sunrise or sunset ?
hugs,
pete

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

That is the beautiful sunset in Puerto Vallarta, Mexico.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

I had an outside surgeon's review this week. A small insurance policy turned up, so "tail" (or rump) was trying to wag the dog. It was obvious that this surgeon was looking at my wife palliatively, whereas we and our surgeons are not. I also have PET/CT + extensive blood data with medical science papers to drive my points for removal of isolated lymph nodes, to be followed immediately with anti-metastatic chemo.

Fortunately, one of our surgeons is the hospital's head of surgery and the other is their pioneer on laproscopic techniques, so this younger surgeon knew when to "salute the flag", and sign the insurance company referral form for us.

It is easy for the doctors to be 10 or 20 years behind on medical science. The trick is getting ahead of them, finding doctors willing to look beyond today's "standard" and coping with institutional interference/backwardness.

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

"The trick is getting ahead of them, and finding doctors willing to look beyond today's "standard"."
Couldn't have said it better!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

my surgeon darren gold fits that description.
his peers may think of him as a maverick, I think of him as a damm fine POM who has got the true aussie spirit of innovation and excellence.

then this is just one paients opinion,
but i do have the utmost faith and trust in him

hugs,
pete

AnneCan
Posts: 3692
Joined: Oct 2009

You have the right attitude; go get 'em tiger!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey Melissa, you say your on 5FU is that oral chemo.....or do you have to go in for infusions?? If it's oral do you still have to go in for weekly blood work etc....thanks Leena

Phoebesnow
Posts: 572
Joined: Apr 2011

I have kaiser also. Getting a 2nd opinion from another Kaiser doctor, is not a true 2nd opinion. They are following the Kaiser Doctrine. Which is save money at all costs.

1. Get a 2nd opinion rite away, find out what there protocol would be.
2.. Email your Doctor with their suggested treatment.
3. Contact Patient Advocate at Kaiser

You will see things change very quickly, when you are fully armed. Never let your guard down at Kaiser, do the research and you tell them what u want.

Best regards

Carrol

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