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Need to see an oncologist?

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

I am 43 and my cancer was found 'accidentally' on a CT for diverticulitis. Fortunately, the tumor was less than 3 cm. Because of its placement, I had to have a radical nephrectomy. My surgery was July 6 and I'm on the road to recovery.

We will see my urologist in one week and get the full pathology report. Initially, he suggested the surgery would be my cure and I'd 'never need to see an oncologist.' However, the more my husband and I read and talk, we really feel like we should consult an oncologist.

What has your experience been? Will the urologist recommend someone, or should we go on our own? A kidney cancer specialist would be important, right? How do we find a good one? We have great doctors in our area, but no friends with kidney cancer experience that we could ask for a recommendation.

Also, I have a lot of questions about taking good care of the one kidney I do have - should I have a nephrologist?

Thanks for any help you can offer. This is my first day and the boards and I've already found so much great information!

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

Hi Minnesota Girl,

I would definitely see an oncologist. If you are in Minnesota, is Mayo a possibility? At least talk to an oncologist that could possibly refer you to someone that specializes in RCC.

Though my tumor was larger than yours, my urologist told me it wasn't necessary to see an oncologist and in fact told me chest xrays and labs every three months for the first year was pretty much it, which was a bit lacking in follow up care. I wish I would have followed up with an oncologist last year.

A nephrologist is not a bad idea either as there are certain things you should do to take care of you kidney.

Someone passed this link to me. I found it useful but remember it is only a guideline and you should do what you feel is best for you and your health.

Rae

icemantoo's picture
icemantoo
Posts: 1567
Joined: Jan 2010

Dear Minnesota girl,

I am 9 years post surgery and here is my perspective. My tumor was 2.7 cm before surgery and I recently found out that it was 4.2cm when they got the rascal out. My Urologist is also a board certified Oncologist so your first question was never asked. What I have ascertained though is that the Urologists who do this surgery (only 5 or 10 %) are specialists in Kidney Cancer. So if the Urologist you see is the one that did the surgery give some weight to his (there are very, very few women Urologists) opinion as well as the pathology report.

On the question of seeing a Nephrologist both my Urologist and GP said this was not necessary and would not recommend one. I scheduled a Nephrologist on my own and he is addressing kidney function issues that have gotten worse over the years.

As a result of only having 1 Kidney your creatine and GFR blood numbers are by definition abnormal. My suggestion is that you see a Nephrologist in any event with these two blood results in hand. Initially the treatment is not very painful. He has my blood pressure down by medication, much lower than my GP was satisfied with. We are also addressing diet questions.

Keep up the good smile so that you can help me welcome the newcomers dowm the road. I will be 68 this week so you have at least 25 more years than me to follow in my place.

At 3cm the odds are in your favor for a full and complete recovery so try not to worry until there is something further to worry about.

Being diagnosed with Kidney Cancer and than having surgery right out of the gate does cause worry, but things do get better every day.

Remember there are a lot of different opinions on this board so look at all of them especially those close to your diagnosis.

Best wishes,

Icemantoo

datwood
Posts: 3
Joined: Jul 2011

From one Minnesota Girl to another....my 53 year old husband was found to have a 17.5 cm tumor on his kidney in 6/10. He had surgery at Mayo in Rochester. Going back for the 3 month follow up CT scan, it was found to have metastsized to his lungs (Stage IV, incurable). The Mayo oncologist wanted him to wait and see how fast they grow, etc. There is an email site with people and caregivers all over the world that have Kidney Cancer. It is ACOR.org. Go to it, click in under the kidney cancer and sign in. You will receive emails daily from the discussion on it. It is priceless. We didn't know what to do when we were first made aware of the RCC. The people on that site encouraged me to be an advocate for my husband and to ALWAYS get a 2nd opinion....and, MOST IMPORTANTLY....HAVE AN ONCOLOGIST THAT SPECIALIZES IN RCC work with you. RCC is not a cancer that every oncologist is well-learned in. There are so many updates on this and new treatments. If an oncologist isn't specialized in this, you could miss so many things. We ended up at the University of Minnesota Masonic Cancer Center with Dr. Dudek. He is amazing and works so closely with us in getting the best treatments for my husband. Please, please follow up with an RCC specialist and get onto the ACOR.org email list....it is such a blessing! I have learned more from that than anywhere. Best of luck to you!!

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

For those of us with tumors <3 cm, surgery is usually the cure. But you must be vigilant about follow up ct scans, just in case.

And I do think your urologist can answer your very good questions and refer you to an oncologist that specializes in kidney cancer. You might want to do this just for peace of mind.

However, keep in mind that since the tumor was caught so small, your prognosis is very, very good. It's the large tumors that bring on the scary stories.

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

Thank you all for your great feedback and comments. I've looked at some of the resources you suggested and am ready to be me own best advocate. Thanks so much!

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

Thank you all for your great feedback and comments. I've looked at some of the resources you suggested and am ready to be me own best advocate. Thanks so much!

piercedmumma
Posts: 7
Joined: Jul 2011

Hi guys

I had a 5cm tumor removed on June 20, 2011. I have been only to my urologist, but everything was contained within the kidney.

Nothing was mentioned about an oncologist, but I will have follow up CT's etc.

So do I need to see an oncologist?

I do not need to have chemo or anything.

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

I am very happy to report I have an appointment with an oncologist who specializes in RCC. My urologist was in total agreement - he brought it up before I did. Since I am so young, he wants the oncologist to take the lead for my follow-up care. In his words "I'm a plumber, you need an electrician" :)

Pathology on the tumor: 2.5 cm, limited to the kidney, all margins free of cancer, Fuhrman Grade 3. That Grade 3 is the only part scaring me.

icemantoo's picture
icemantoo
Posts: 1567
Joined: Jan 2010

Minnesota Girl,

Sounds good. You should be able to replace me down the road. I am 68 now. A 9 year survivor amd may not be around 25 years from now when you reach 68.

Best wishes,

Icemantoo

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

I had a radical nephrectomy Oct 2009 at age 46. Went in for u/s to confirm gallstones. Tumor was able the size of my fist. Didn't require any treatment as it was confined, and doc was able to get clean margins. I've been following up every three months rotating CT Scans, labs/blood work, and MRI. CT Scan last week showed a small lesion (size of a small pea) on my remaining kidney. Needless to say, I'm worried sick!!!! Doc wants to follow up in Nov with an ultrasound. I didn't question him about why wait as I was in shock. Started thinking maybe I should see an Oncologist too.
He's on vacation for two weeks, I will be calling him when he's back in the office. Have you had any experience with the U of M , or Mayo?

I hope your recovery is going well!
Take Care
Valerie

icemantoo's picture
icemantoo
Posts: 1567
Joined: Jan 2010

Valarie,

Small cysts and lesions on the Kidney are not that uncommon. Typically the doctors watch them over a period of time to make sure that nothing develops. I have those little buggars on my remaining kidney from time to time. It has been over 9 years and I have no intention of worrying about this until my doctor (a urological oncologist) shows some concern.

Best Wishes,

Icemantoo

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Icemantoo

Thanks for the reply. I need to find a way to not worry so much, I'm going
to get an ulcer! Glad to hear that you're doing well.
Valerie

Kwilliams630's picture
Kwilliams630
Posts: 10
Joined: Aug 2011

Hi everyone. This is my first day on the network and already I'm so glad I found this! I had an open partial not even 2 weeks ago and was wondering myself about seeing an oncologist. I want my follow up to be thorough as everyone does. Just scared a little about recurrence even though I know chances are slim because my tumor was only 2.5 cm. But I'm only 29 and just want to make the right steps for follow up! So do some of you see your urologist and an oncologist now or just one? Like I said I'm new here and hope I'm even posting right! LOL

Thanks!!

BG
Posts: 85
Joined: Jun 2011

Hi K, I am with you. My partial was 4 weeks ago, and next Monday I have an appointment with an Oncologist who specializes in RCC. My tumor was 3.9 cm, and confined to the kidney but I still feel for me that it is important to add an Oncologist to the team.

There are a lot of wonderfull individuals on this site, who provide guidance, support, and much more. We are lucky to have run across this network!

I wish you the very best, and know with each day you will get better.

Brent

Kwilliams630's picture
Kwilliams630
Posts: 10
Joined: Aug 2011

Thanks for the comment BG! After coming across this network today i feel almost giddy, like its Christmas or something! HAHA! This particular discussion has been most helpful as the question of an oncologist has been one of my main concerns. I guess what it comes down to is that we all need to be in control of our own health. Had i not pushed for a biopsy we would have just been watching the mass on my kidney. My urologist was "very confident" that it was benign considering i am only 29 and suggested just watching it. But i wasn't comfortable with just watching it. I guess adding an oncologist is like another security blanket for me, LOL. I have 2 small kids and i want to know i'm covering all by bases, just like every one else. I will be discussing adding an oncologist to my "team" at my follow-up appointment.

Thanks again for the reply. As you know every response and kind word helps in so many ways!! Lucky to be here :)

BG
Posts: 85
Joined: Jun 2011

Hi K,

My doctor said I had high liver enzymes, and said we can wait 3 months and recheck, or you can get an ultrasound. I opted to get the ultrasound, and thats when they found the tumor, so I know what you mean when you say we need to be in cotrol of our own health.

Even though I know for stage 1 the prognosis is good, I need that reassurnce and feel an oncologist can answer some questions that urologist can't.

As several individuals have said on this board, be sure to get a RCC specialist rather than a general oncologist. If you post the city or area you live in, others may be able to direct you to a specialist near you.

I too have 2 small children (ages 3 and 6), I started late being 48 now, but I am thankful for finding this early. My prayers are with you!

BG

Kwilliams630's picture
Kwilliams630
Posts: 10
Joined: Aug 2011

Sounds like we are almost in the same boat! Where should i post my area? start a new discussion? Sorry like i said i'm new to this LOL. I never would have thought to look for an oncologist with a "specialty", wasn't aware they existed, just thought an oncologist was an oncologist. Ive learned so much today!

Our kids are the same age. I'm so grateful for the early diagnosis as well. Thanks for all your help and i'm always here as someone who can relate! Don't forget that! I wish you peace and comfort and laughter beyond what is considered normal..laughter until your belly hurts...thats the real antidote for any situation in life. It hurts me to laugh right now because of the pain but by God i do it anyways!

K

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

K -

As you can surmise, I DID go ahead with an oncologist. It was clear in meeting with the urologist this week that the oncologist is being MUCH more aggressive in follow-up than the urologist would have been. That alone reinforced we made the right choice.

Additionally, my oncologist participates in a lot of research, so he knows the latest on trials, drug therapies, etc. He talked about a recent study they completed that is now being analyzed. If it shows promise in preventing recurrence, he will get me on the protocol.

So, I say GO FOR IT!

BG
Posts: 85
Joined: Jun 2011

Hi Minnesota Girl,

I will see my oncologist this comming Monday for the first time. I am trying to put together a list of questions and was wondering if you knew what drug was used for the re-occurence study that is being analyzed?

I will ask my oncologist if this is something to consider for me. Also, if anyone can think of pertinent questions for the oncologist I would appreciate it.

Thanks,

BG

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

Sorry BG. I didn't get the name of the drug. That particular study is closed now, anyhow. Maybe just ask your doc how they approach clinicals and if you will be considered as a participant.

newenglandguy
Posts: 66
Joined: Jun 2011

Hi Minnesota Girl
Ran across one of your older posts and was wondering if you Onc shared the results of the study your mentioned in the post. Be interested in trying to get some info and wondering what drug it is. Thanks

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

But I will be seeing him December 5. I will try to remember to ask.

newenglandguy
Posts: 66
Joined: Jun 2011

Minnesota Girl - I would really appreciate that info. Good luck with your appointment.

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

He didn't have any new information, now they are waiting for results. It compares Sutent, Nexavar and placebo for their effectiveness in preventing recurrence.

newenglandguy
Posts: 66
Joined: Jun 2011

Minnesota Girl - thanks for taking the time to ask. Appreciate it.

Liora4queen's picture
Liora4queen
Posts: 22
Joined: Nov 2011

K-
I'm new to this site too. I'm 36 and also have 2 kids - aged 6 & 3. I'm waiting for my surgery, which is scheduled for 12/7 and am pretty scared.
How are you coping with the kids since your surgery?

BG
Posts: 85
Joined: Jun 2011

Hi Liora,

My daughter is 6 and my son is 4, actually 3 when I had surgery in July. For me, this was tough as Daddy is the one who gave piggy back rides, and would restle with the kids. Not being able to pick them up for a period was also tough. It did not help to have a car accident last november which also prevented me from these activities.

Now, 4 months post surgery it is not so bad. We just told the kids Daddy had surgery, nothing about cancer. They have seen the scars, rather small since laproscopic, but they still go through muscle, so there is still some incision site pain and additional pain time to time.

The kids did well, but for me it was hard because they were the ones I worried about. I am better now, and make sure I give them plenty of love every day.

Keep us posted on the surgery. My daughter visited me in the recovery room the 2nd day with my wife, but my son did not.

BG

Liora4queen's picture
Liora4queen
Posts: 22
Joined: Nov 2011

Hi BG,
Thanks for your post - I think my anxiety about my kids is actually higher than my anxiety about the surgery and tumor. I have told my kids that I have a boo boo that is inside my body so I have to have an operation to take them out.
They seem to be OK with that idea.
I'm wondering...how did your kids handle seeing you in the hospital the day after surgery? I know I'll be missing mine like crazy, but was concerned that the hospital/seeing me looking sick, might be scary for them.
I'm having a laparoscopic partial and am hoping that I wont be in too bad shape. Is that a realistic hope?
Liora

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Liora,

My kids were all grown at the time of my surgery but I had 9 young grandchildren at the time and they all came to see me without issue. The youngest were a bit intimidated by the whole hospital atmosphere, but as soon as they saw me it was all smiles and hugs, IV's and all. Kids have no concept of mortality like us adults, in fact I was surprised by how inquisitive and intuitive they were, most even wanting to see my new zipper complete with staples. My guess, a visit in the hospital will do you and your little ones a lot of good, it will confirm that mommy is just fine.

Stay strong,

Gary

BG
Posts: 85
Joined: Jun 2011

Hi Liora,

I had the partial, laproscopic with the davinici robot. My daughter (5 years) was ok with the visit, my 3 year old did not come by choice of my wife, probably a good call. However, I feel he would have been fine. I was fine in the hospital, had an IV, but no pain, so my daughter handled things well and we kept the visit short. My wife stayed in my room the first night.

My anxiety was and still is in part due to my children. I have no desire to leve them at such a young age, so of course your mind starts reeling. Once I got home, the added battle was telling the kids I cant give piggy back rides, lift them, and have them crawl all over me. This is an adjustment you will need to get use to, no fun in addition to the surgery.

You will not be in too bad of shape, a childs love will help you heal. Their kisses are better than the pain meds.... But still take the pain meds. Get a stool softeneer med, eat lots of fruit and veggies, cut back on red meat if you can since the pain meds tend to constipate you. At the hospital, try to walk, it will be difficult at first, use your breathing tube thing to work your lungs, and push yourself to use the restroom once catheter is out.

If you have a high anziety, request a valium or 2 once you get to your nurse. They gave me 2, and the next thing I knew my wife was by my side in the recovery room. My daughters visit was later, she helped me eat my pudding!

I wish you well, and will send prayers your way.

BG

Liora4queen's picture
Liora4queen
Posts: 22
Joined: Nov 2011

Hi,
It sounds like we're in a very similar boat. I have a few more questions, because I'm pretty anxious about the recovery.
How long were you in the hospital and how was the pain when you went home?
What is the breathing tube for? I don't really understand that part. How does the surgery affect the lungs?
Could you sleep normally in your bed when you came home, or were you uncomfortable?
I think it's going to be very tough for my younger one, who is a bouncy 3 yr old boy, to not be all over me. He's so attached to me and is never happy just sitting next to me. He has to sit ON me!
When was your surgery and are you able to rough and tumble with the little ones again now?
Sorry for the cross examination!
Liora

BG
Posts: 85
Joined: Jun 2011

Hi Liora,

I had a partial nephrectomy with the robot, so I was in the hospital 3 nights. It would have been 2 nights but I got nauseas and had to stay an extra night. Tell them you want nausea meds right off the bat, they will gove through IV, the morphine makes some people nauseus but it managed the pain very well.

There is a tube they have you breath into to work your lungs, nothing you are hooked up to. Try to do this several times a day. Also, try to walk as much as you can, the first time out of the hospital bed was tough and painful, but each time I walked I went further, progress.

The pain meds worked fine at home, I took the minimum, and tapered off easily with some leftover!! If you have the open surgery, I understand the recovery is much more difficult. I had to sleep on one side, in a bed by myself, as the kids join us sometimes and my 3 year old kicks once in a while when he sleeps, so plann accordingly.

I am 5 months post surgery, a little incision site (four 0.5" and one 2") sensitivity, but I can rough and tumble with the kids pretty good. I did miss the piggy back rides for some time. After surgery I believe the limit is 10 lbs for lifting, but check with your doc. Ask any questions you like, we are here to help, provide support, listen, and at times ask for support ourselves....

BG

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