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Finally saw an Oncologist for advice what to do

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

After all various recommendations to go get the consultation of an oncologist due to a May 17th removal of a T1a F2 3.4x2.2 clearcell and my first follow up is due on Dec 10 after an ultrasound week prior, with the surgeon......the highly praised oncologist basically swept me out the door and said I have nothing to offer you as you don't have the tumor in you anymore and theres nothing the urologist can't do for you that we can't at this point. Also asked him about any diet tips.... said, due to no family history of cancer your diet shouldn't matter at all.

I don't know, I basically walked out of there perplexed as usual. Will just go with the surgeons plan I guess. Hoping to at least get a catscan next time as I think they show more than an ultrasound, and will still try and stay away from factory food and follow advice from what I read here more than anywhere.

icemantoo's picture
icemantoo
Posts: 1473
Joined: Jan 2010

jk,

Would you have felt better if he dwelled on the minimal chace that you could have a recurrance down the road and put you in some drug test that you did not need. No. Be thankful you are NED for the forseeable future if not forever, knowing you did all you could and may be to make sure you were getting the proper care. eh.

 

Icemantoo

Jan4you's picture
Jan4you
Posts: 182
Joined: Oct 2013

First of all, hope your scan will turn out great and be reassuring to you! I can understand your concerns with a family history of cancer.

As far as this renown oncologist, he needs some people skills right? That "matter of fact" approach tells me he's forgotten what its like to go through this and this is his choice of discipline in medicine. Kindness or saying things that soothe a patient is just as important a "treatment" in my pt of view.

And YES there are diet changes to help prevent cancers. Actually we have cancer cells all the time and our immune system is getting rid of them best it can. So you want to reduce "inflammation" caused by what we ingest as that exacerbates diseases or triggers of most illnesses, including a cold. I will seek out some better websites on diet changes and get back to you.

Warmly, Jan

a_oaklee
Posts: 155
Joined: Nov 2013

Congratulations on the good news.  I do understand your feelings re wanting more reassurance or more diagnostic tests, especially after reading on this site.  I think, if I were you, I would request from the doctor a chest xray, renal function blood test, and the possibility of having a CT scan.  I would at least ask. 

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

If the oncologist was excited to see you, that means you are interesting to them.  That is, there is something they can treat, then they want to see you.  Oncologists will generally not try to reassure you that all is well.  The reality of Kidney Cancer is, after surgery and without mets, we are NED.  Disease free.  Until there is evidence of disease, there is nothing to do.

 

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

So right, I got just a little too cautious from reading all the stuff on how we have to take care of ourselves and how important it was to nab an oncologist. Its easy to do when you get any kind of abdominal pains or sore bones, all likely nothing but normal aches. They have better things to do than baby sit. I mentioned I didn't have any family history of cancer that I know of, so likely the deal breaker.  Till I get a couple scans under my belt I'm going to shut up.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

It's too bad the doc made you feel a bit dismissed, but I agree with the others. If he's not too worried, you shouldn't be either. Our tumors were fairly similar and you appear to be young-ish like me. While I am seeing an RCC oncologist for follow-up care, I don't think the course of action is much different than what you are getting - periodic imaging and bloodwork. If they reveal any new masses - time for a new gameplan. A kidney doc or even dietician may be able to give you diet recommendations for kidney health.

Jan4you's picture
Jan4you
Posts: 182
Joined: Oct 2013

http://articles.mercola.com/sites/articles/archive/2013/11/11/arginine-starvation-diet.aspx

http://articles.mercola.com/sites/articles/archive/2013/09/02/calorie-restriction-cancer-therapy.aspx

 

Here are two articles about Dr Mercola's web site on better health and fighting cancer from my sister

 

Be well, my friend, Jan

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Thanks Jan for the diet links, haven't looked into it yet, it can't hurt to check them out and I will, the oncologist said its not a theory he believes in but then again some swear that marijuana has anti cancer properties and some don't, who knows, its being studied in some places.

Hey Minngirl, haven't had my first follow up yet but I think they are only giving me an ultrascan. Have you had one yet and did you get a blood test also. Your oncologist took you in? so some do some don't I guess, considering you had the same thing. Really hope they tell us we don't have to see any of them in a few years. My uro/surgeon is a good guy never the less.

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Hey JK,

Just today, I got an appointment scheduled with an oncologist, finally!  I've been trying since shortly after my radical neph, just this past May.  I am 6 months post-op.  My tumor was stage 1, grade 2 Clear Cell RCC.  Tumor size was 4.7cm.  I am scheduled for my first scan (chest x-ray) and blood work (CBC and CMP) this Wednesday, by my surgeon/urologist.  That's all well and good but what I really want is, at minimum, a ct.  If I had it my way, I'd get a full body PET scan. 

I have never been one to go to the doctor unless absolutely necessary, as I hate spending my hard earned money on doctor bills but, since my diagnosis I have this gut feeling that something more is lurking inside me and I just can't shake it.  So much so that I don't care what it costs.  I will even pay the PET out of pocket if insurance won't cover it and, from what I understand, that scan runs upwards of $6k..YIKES!!  Unlike you, I have a strong family history of cancer.  I lost both my parents in their early 60's, to cancer.  I'm just 12 years younger than they were when they died...that's a little too close for comfort.  So, I'm hoping this oncologist will agree with me and agree to do more testing/scans.  Time will tell, my appointment is December 26th.

If, after seeing him, he tells me to chill out then that's what I'll do.  But, I'd reather he understand my fears and just order the damn tests.  It may be a high price to pay for peace of mind but, it will be so worth it if I can relax.

I'd be happy to test the theory of anti cancer properties in marijuana.  I wonder if there's a study I could join for that Wink

Have a happy Thanksgiving!

Sindy

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Sindy, you might want to request a CEA on your bloodwork.  This finds cancer enzymes in the blood. I figure I'm going to glow pea-green and purple before this is over, but I'll take a little excess radiation to not finding a met while it is still small.  You definitely will want to get a chest/abdominal/pelvic CT, which I'm sure the oncologist will order.  Good luck, girlfriend, and let me know what the dr. says after your initial appt. in December.  Which doctor are you seeing?  Us Okies got to stick together!

 

ps:  most scans (PET, CT, etc) will be covered by insurance during the first year following cancer dx with little or no questions!

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I haven't researched this myself; I'm just repeating what my primary care doc said. I have to have a PET scan on Monday because I have metastatic breast cancer. And I'm due for my kidney cancer two-year follow up ct scan in December. So, I said, "Well, if I'm getting a PET scan, then I guess I don't really need to go for the CT scan." My doc said, "I don't know. Let me look that up." She said I have to keep the kidney ct scan appt because PET scans weren't good at spotting kidney cancer.

i have no idea why not.  Perhaps because the PET scan picks up tumors that depend on sugar, and maybe kidney tumors dont do that.     I'm just guessing. But I thought I would mention that possibility. 

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Most renal cancers are not "avid" for glucose.  Therefore they will generarlly not be caught by a PET scan (which just looks for abnormal amounts of glucose uptake by any tissues).

Virtually every renal cancer has one or more genes that are involved with metabolism disrupted or disfunctional.  That is why renal cancer is a prime example of a cancer that is a metabolic, not primarily genomic, disease.  That means that - contrary to all the hype surrounding genetic testing (which only looks into the nucleus) - one needs to be aware that it is the cells mitochondria that is highly dysfunctional.

Renal tumors can ferment various amino acids - starting with Glutamine - to derive their energy in addition to fermenting glucose.

The bottom line is that you need a CT scan to find 'em.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Yes - I did find an oncologist that was willing to manage my follow-up care. But both he and my urologist had recommended similar regimens - CT of the pelvis and chest every 3-4 months for the first year, then every six months. At the two year mark, my oncologist now suggests I see him every 6 months - alternating between chest xrays and CTs (so I get one of each a year.) If anything looks 'off' in my bloodwork, I expect we'll do more scans...

Not to burst your bubble, but the doc told me to plan on 15 years of follow-up before I would be considered cured (his rule of thumb) and likely that I would always be monitored.

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Don't think I'd want too many catscans as they involve radiation so I was told, but I think I'd like at least 1 within my first year rather than 2 ultrascans. No dice on the weed theory in America as its not open to any trials for the betterment of mankind. Why I don't know. Really hope they find something soon. Undecided

dhs1963's picture
dhs1963
Posts: 368
Joined: May 2012

Living with cancer is much harder at first.  You want to be proactive, but there is nothing to do.  I decided my cancer was cured by the surgery, and did not worry.  Mine was a T1b but with Sarcomitoid features, meaning it was grade 4 and very aggressive.  At six months, I had the gut check -- or the lung check, and a met showed up in the lung.  They cut it out.  Now, I am getting scanned agressively, every three months, CT & PET.  That is a lot of radiation, but I figure the risk of radiation is less than the threat of cancer.

But, I have mostly decided that I can live a good life in the mean time.  Besides, my heart might get me first.  (It almost did....my summer haiku:

It would really suck,
to drop dead two weeks after,
the doctor said NED.

And yesterday, I found out I have a dilitated aorta, whatever the hell that means.
 (googling that was like googling RCC sarcomitoid -- depressing).  Oh, and I am not 50 yet....I am 49.977; birthday next week)

 

My point is we don't know what will happen.  What you do know is all is well until the next scan.  You can obsess over it, or you can enjoy life.  I prefer the latter, but I will obsess the week of the scans.

 

Ladylacy
Posts: 463
Joined: Apr 2012

Please don't go by since there is no history of cancer in the family.  Well there was none in our family, but our youngest son at 41 had one of his kidneys removed due to cancer.  Thankfully the cancer was self-contained and no spread.  He is 4 1/2 years out with no further treatment and everything has been good so far.  He doesn't smoke or drink, two things that as usual they try to say causes cancer.

My Aunt at 74 died from esophageal cancer, once again no family history.  My husband has been fighting laryngeal cancer, 2nd primary at cervical of his esophagus then NED for 4 months but cancer returned and showed up in his right lung.  Your oncologist sounds like the one we were seeing.  He said that, get this, since he wasn't having any symptoms nothing needed to be done now.  No symptons, but biopsy showed cancer in his right lung and return of a much larger tumor at the cervical of his esophagus (surgery was ruled out due to 70 rounds of radiation, previous surgery).  He was supposed to be top of his field, yeah right.   Of course, my husband had already told me he wasn't going to do anything else.  10 months out and he is still here and doing okay.  So who knows.

Guess what I'm trying to say is that just because there is no family history of cancer, doesn't mean it can't occur and then reoccurr.

 

 

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Believe me I'm done with the no family history thing.  I contracted cancer so other than the early diagnosis by accident I've thrown that luck stuff right out the car window. So sorry to hear about a lot of the things that are happening here with many folks, its real hard to find anything good to say, besides sharing things that might help explain more. Thanks to here, I'll ask my surgeon at the first exam if that CEA or other blood test is a good idea also, and see if he can suggest a more extensive area scan next time. Really puzzling why they don't do all this on the first visit anyway cause it just makes that next six months feel like an eternity. Thanks.

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