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Recurrence

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

I got my CT scan results back today and my cancer has come back. I have a tumor 3 X 4cm in the area where my left kidney was. Has anyone else had this happen and what did you do next? I am considering going to Cleveland Clinic this time around. I saw a urologist last year for my nephrectomy and have been seeing my GP for follow up since. This is the first CT scan I have had since my diagnosis one year ago this week.

Rae

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Rae,

What type of RCC did you have?

What has your GP said?

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

I had clear cell. My GP said whatever I want to do she would refer me. She has notified my urologist but I want to go where they specialize in kidney cancer this time around.

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Great. Stay vigilant. All will be well, just stay on top of those doctors. What type of tissue is the cancer on? Did they tell you that?

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

It's all a blur to me right now. I walked out without a copy of the report but I can obtain it easily enough. It's basically in the space where my kidney used to be -that's all I can tell you right now. I just discovred my insurance isn't accepted at Cleveland Clinic. I am in Michigan. If anyone knows of a Dr. that specializes in kidney cancer in my area let me know. So far both UofM and Cleveland do not accept my insurance. I may have to appeal. Sigh.

Rae

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - sorry to hear the news, but stay on top of it. May I ask what type of insurance you have - i.e. POS, PPO, HMO, etc. Do they allow to go what they call "out of network"? Also, has Cleveland Clinic actually told you they won't accept you?

Let us understand a little bit about your insurance requirements. I have relatives in Detroit, and I can see what they might recommend.

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - sorry to hear the news, but stay on top of it. May I ask what type of insurance you have - i.e. POS, PPO, HMO, etc. Do they allow to go what they call "out of network"? Also, has Cleveland Clinic actually told you they won't accept you?

Let us understand a little bit about your insurance requirements. I have relatives in Detroit, and I can see what they might recommend.

Check this doc out a little more, and he served his Redidency at Cleveland Clinic:

http://www.shmg.org/body.cfm?id=100&action=detail&ref=4568&limit_specialty=Urology&limit_within=0

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Thank you, I believe my insurance (Priority Health HMO) works with Spectrum but I will find out for sure. I do have to stay in the network unless I want to pay the entire cost. I can have a Dr appeal that under certain criteria.

Thanks again,
Rae

aedney
Posts: 6
Joined: Jul 2011

I have been seeing Dr. Bruce Redman (oncologist) at U of M for my metastatic kidney cancer. I had my left kidney removed, but it had spread to my chest wall. My insurance was out of network with U of M so I had to pay much more out of pocket than I would have at a different hospital. They have been really great about payment, letting us pay small monthly payments toward our out of pocket costs. In the beginning, before we decided to go to U of M, I saw Dr. Harold Margolis (oncologist) at Beaumont Hospital (do you have a Beaumont doctor?), he was also really great, but UofM just seemed like a better choice. I just underwent HDIL2 treatment, I go back this week to get the results of my CT scan, if this treament didn't work, we are considering other treatment facilities as well (Cleveland or Mayo Clinics possibly). Let me know if I can help you, I am located in a suburb of Detroit.

Amy

lkhof9
Posts: 3
Joined: Jun 2010

Hi Rae,
I joined the forum last year. I just was reading the blogs and noticed
your story. I was diagnosed with RCC in my right kidney in about February, 2009.
Mine was found incidentally. I understand what you're going through and I
know there are many people in this forum that care and will help you get through
it all with correspondence. My tumor was 2cm. Had all the appropriate tests
and body scans and other organs checked. All no "METS". My tumor was ablated by a
procedure called "Radiofrequency Ablation". They burned my tumor out. I still
have my kidney. I've had 7 CTs since then with "no recurrence"...was 2 years
ago in June. I've been asked by a couple of doctors why I didn't have a partial
nephrectomy, and I wonder myself now. If it was to return, I would definitely
make sure of a nephrectomy. The one thing I know for sure, and truly believe
in is to stay "Proactive" with your care and treatment. Ask alot of questions..
write them down for the doctor and make sure they are answered. We depend on
their evaluations, advice and answers to assure we receive the best care.
Also, I believe in second opinions or even third opinions. It's important. I
wish you didn't have the problems with insurance. Never,never give up. Appeal
and challenge if needed. Above all, try and keep a positive attitude. It's
hard, I know. I still have bad days, but be thankful there's always 'HOPE'!!

You might go on line and research for doctors that specialize in kidney cancer
of your type, that accept your insurance and in Michigan. There has to be
someone. Don't give up.

I also live in Michigan and went to the U of M at one time. Keep the faith and
know all of us care.

Sincerely,
lkhof9

jane99
Posts: 15
Joined: Jul 2009

I also had the same recurrence as you. Six months after my nephrectomy I had a retroperitoneal mass in the lymph node where my kidney used to be. It was abutting the vena cava. I had surgery and the mass was removed. A year has passed and I again have the same thing basically in the same place. I have been on sutent the past year but have been switched to torisel. I am trying to decide between a third surgery or cybernife radiation. I have no spread of the cancer to any other location. I had good recovery from my surgeries but the idea of another one (since 2009) is daunting. But I will probably go for it. Get as much information as you can on your options. As others have said, it's a good idea to have people who are very familiar with rcc evaluating you. Good luck to you.

Jane

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

And keep in mind that your tumor is still relatively small, though it did grow more in 1 year than I'd expect. (For example, mine grew 1 mm in 6 months.) I'm sorry U of M isn't on your insurance; they've done some good research with kidneys and ct scans lately. Have you checked out the Mayo in MN? I,too, would be interested in what the new tumor is attached to. I wondering if this is a case of metastasis? original tumor cells were left behind?

Do you remember the size and location of your original tumor? -- the one for which you had the nephrectomy?

Just so you're not going through the same thing in another 1 or 2 years from now, have you considered having a full body scan? I'd rather get things taken care of now and while they're small.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Jane, thanks for the information - I can't imagine it coming back TWICE. Do they consider this as mets or just local recurrence, and what is the difference? Jamie, from what I have read (which has been very little on the subject) it's usually caused by negative margins or imcomplete resection. According to my path report, I had positive margins. The only thing on my path report that gave me caution was that a 1mm spot escaped the kidney capsule.

The tumor is attached to the fascia or connective tissue that surrounds the now empty space where my kidney was. My orginal tumor was on the top pole of my left kidney butting against my spleen and pancreas but still contained within the kidney capsule. It was approximately 8 x 9cm. My path report came back as grade 3, stage 2a.

My GP and I are both amazed at the rate of growth - my surgery was 9 months ago so 3 x4cm is rapid growth. My insurance case worker told me to contact a local onocologist asap and have them refer me. She said they could refer me to Cleveland clinic as long as they have good clinical reason why I should go. Actually I am happy to see a Dr. within my network as long as they have experience with RCC. It's just trying to find one that seems difficult. I have gone to the Kidney Cancer Association website twice and both emailed and called the nurse hotline as they can provide info on doctors in my area that specialize in RCC. The first time I contacted them was last fall before my nephrectomy and I never got a response. I tried again on Friday so we will see if anything comes of it.

In the meantime, anyone that has information would be greatly appreciated. I live in a very small town in N. Michigan so my resources up here are limited.

Thanks again,
Rae

jane99
Posts: 15
Joined: Jul 2009

Hi Rae,

This stuff does get confusing. My recurrence is considered both a local recurrence and mets, since it is in a different spot than where it originally was (in the kidney). When I was initially diagnosed the first time I had a 4 cm tumor and I had to wait about 6 weeks for my nephrectomy and it grew to 10 cm. The path report showed negative margins and I was told I had a 90% chance of never having a problem with rcc again. But my tumor was also as grade 4 (the most aggressive type) so they said I would need to be vigilant with scans.
And then there is was showing up on my first scan. I also have an insurance issue somewhat similar to yours. I work for a hospital chain and we are self-insured so they want us to use doctors and facilities within our own chain. With both these recurrences I have been told that my tumor was (is) inoperable. But I live near a cancer center and I have gone there for second opinions and have been told it is operable. Last time I was diagnosed with the recurrence in Jan 2010 and after haggling with the insurance company I was finally able to get my surgery in April of 2010. It didn't seem to matter though as there was no spread to other organs, I don't know what will happen this time if I ask the insurance company to pay for another out of network surgery only 15 months later. I really think it would have benefited me if they have approved my going to an oncologist who specialized in rcc. There is no one in my network who has that specialization so I have been seeing someone who is a generalist. I like my oncologist but she does not have a lot of experience with rcc. But on the plus side she has been conferring with other physicians and is proactive and accessible when I have questions. It would be great if you could be seen at the Cleveland Clinic. I would keep pestering everyone you need to paster to get them to move quickly, which I am sure you are doing. If you have any other questions, please let me know.
Jane

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

I vote for the Cleveland Clinic as well, and speed does seem to be of the essence if you've got fasting growing tumors.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

After many calls today, I got in touch with the doctor in Grand Rapids that newenglandguy posted on his reply. The lady said she could get me in this Thursday afternoon as long as they faxed my records over TODAY. I drove over to my GP's office, signed the release and requested in desperation that they please fax the records today. The lady responded "we will see what we can do". I left and called and then left a message to have my GP call me. I know as soon as she can she will because she is awesome that way. I plan to have her push the office girls to get that faxed ASAP. Otherwise I am looking at a 16 day wait or more to get in elsewhere. I went down a list making appointments or asking how long the wait would be. Hoping and praying they fax the information over today.

Rae

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - if this lady was awesome she wouldn't say "we'll see what we can do". I'd call her mid-day tomorrow (Tuesday) and kindly ask if she's faxed the info. If not, I'd spend a few minutes explaining that you consider this appointment very critical and ask her if she could do you a huge favor and get your records faxed by COB Tuesday. Don't be afraid to be a little assertive, while still being diplomatic. Stress how important you feel this appointment is to you.

Good luck and keep us all posted on your progress.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

My Gp put some pressure on the staff and got my records faxed yesterday. I will be going to that appointment on Thursday. Will update after. Thank you everyone.
Rae

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

My Gp put some pressure on the staff and got my records faxed yesterday. I will be going to that appointment on Thursday. Will update after. Thank you everyone.
Rae

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Oops

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

Sounds like this guy may be your most convenient option. And since his training was at the Cleveland Clinic, you may be getting the best of both worlds.

Good luck!

aedney
Posts: 6
Joined: Jul 2011

Hi Rae, I posted another time about my experiences at UofM, but I just read your post more closely and we have the same type of insurance (Priority Health). UofM will accept it, you will just be out of network. I urge you to talk to Dr. Bruce Redman (oncologist) as this type of cancer is his speciality.

Amy

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Thanks for the information, Amy. I met with Dr. Brian Lane today and he does specialize in RCC. He worked at Cleveland Clinic prior to moving to the Grand Rapids area where his wife is from. I am having a biopsy next week to confirm it is cancer. Since the mass is right near my spleen and pancreas, where the urologist that did my nephrectomy ran into trouble, he said there was a "slight" chance it was a blot clot or damage from that, but he seemed more confident that it was cancer.

Surgery would be very involved right now due to the location. I would lose my spleen, probably part of my pancreas and it might possibly involve muscle around the chest wall and diaphram. I am going to start on sutent most likely next week and the other good news is there is a research program going on with a doctor he works closely with that my insurance company has allowed four "slots" to participate. He is going to get me on that program. The plan is to hopefully shrink the tumor and in three months do a less invasive surgery. I will know more next week after my biopsy.

Thank you everyone for your support.

Rae

BG
Posts: 85
Joined: Jun 2011

Rae Rae my thoughts and prayers are with you. I'm sending you a gentle hug via this email as my surgery site is still sore.

BG

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - the only way to confirm cancer is to biopsy it. Please let us know when you get the pathology report. I'll be praying for you. I'm glad you got the appointment with Dr Lane as you need to be speedy in getting results and moving to the next step. I'm wishing and hoping for some good news on your pathology report

Please let us know when you get the results.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Thank you BG and newenglandguy. My biopsy is Friday at noon so it will probably be the following week at the earliest before I get the results back. I will keep everyone updated. Thanks again everyone,

Rae

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

Hey, Rae Rae. I'm still thinking about you and sending good vibes your way.

I've heard that kidney cancer does not biopsy very well, outside of surgery. So I'll be curious to see if they get a good reading on your tumor before actually going in to fetch it.

lkhof9
Posts: 3
Joined: Jun 2010

I just responded to your previous blog and found your response regarding your
pathology. I just discovered it. I absolutely understand about limited
resources in Michigan. I also live in a small town in N.Michigan. We've
had to travel many, many miles to doctors and for my surgery down state.
It's brutal. I will keep you in my prayers. We are only less than 90
miles from T.C. You might check on specialists in T.C. (Munson Hospital).
It's a great hospital with wonderful doctors. I don't know how far you
are at this point with your care since your last post in July, but wanted
to respond again.

Good luck, and remember to stay "Proactive". Will follow your responses.

lkhof9

Rayman NY
Posts: 12
Joined: Jul 2011

I am currently working with Cleveland Clinic with my Rcc of the left Kidney. It is a amazing place. The Doc I am working with Steven Campbell MD. He is the best and has written the book on Kidney cancer.

Good luck

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

The biopsy went well though I have to admit it was slightly painful. I felt great when I left, probably due to the drugs. When I got home (2 hour drive, friend drove me), I was extremely sore and tired. It feels like someone took a baseball bat to my back. Other than that, it was a piece of cake. Will update once I get results.

Rae

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

I am thinking of you and sending ggod thoughts your way ! May you get some good news soon.
Colleen

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

Results should be coming in now. At least, when they biopsy during surgery it can take about 4 days to get the specific results. As you know, I've never heard of anyone getting a biopsy before surgery for KC, so I'm anxious to hear what they say. I'm keeping my fingers crossed for you!

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Since they called and set up an appt. next Monday with the chemo dr. I am guessing it wasn't benign lol. They were pretty confident it was cancer anyhow. I also had to have the biopsy for the research protocol. It's a study on the moleculear level. When I have my wits about me I will write more about it. It's been a crazy busy couple of weeks for me with work so my brain needs to unwind. I will update as I learn more and know better what I am talking about.

Rae

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

No problem, Rae-Rae. Take your time. Don't forget to breathe. : )

They are probably going to start you on sutent or another med they use for recurrence and metastasis. I'm on another support site (in the UK) where recurrence and the use of meds like sutent are very common. Let me know if you want me to pass on their URL.

I'm surprised they haven't just schedule you for another surgery though. This tumor is still small enough to deal with easily via surgery! Maybe they're just trying to prevent another recurrence after surgery. Keep us posted, and we'll all learn from this together.

sending healing vibes your way ~~~~~

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

I went to see the medical oncologist today. We went over my history from the first symptoms up to the biopsy. After this five or so minute long discussion, he asked "what do you know about your biopsy?" I said "nothing except it hurt".

Well much to EVERYONE's surprise, the mass was benign!!! They all thought it was cancer, turns out it is damage from the surgery including dead tissue and blood. I don't have a recurrence! I am having another CT scan in five weeks and will follow up with him in six weeks. He said I was still high risk and wants to keep a close eye on things but as of right now, no Sutent, no cancer, nothing.

I can't tell you how relieved and yet slightly taken off guard I am. Everyone was confident it was cancer.

Thank you all for your support.

Rae

BG
Posts: 85
Joined: Jun 2011

Rae Rae,

This news brightens my day!! I have been thinking of you!

God bless you,

Brent

donna_lee's picture
donna_lee
Posts: 415
Joined: Feb 2009

It's great to hear the good news. As someone who's had 2 recurrences, both positive for the RCC, I'm soooo glad to hear your's was benign. My next CT is not for another month and I always start to get a little edgy about this time.
Keep on hanging in.
Donna

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.

newenglandguy
Posts: 66
Joined: Jun 2011

Rae Rae - that's awesome news! You've got to be so relieved. Even though it turned out benign, you did the right thing by moving quickly and getting things followed up.

niprut
Posts: 23
Joined: Jul 2011

Hi Rae-Rae,

I have been following your plight and want you to know that I have just let out a big sigh of relief for you. I am so pleased, we go through so much and then more. Take a moment and breathe again.

Take care,

Jo

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

So happy to hear the good news!

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Many thanks! Dr. Lane called today to also give me the report and wants another test (mri, pet, ct or ultrasound, not sure yet)in a week or two. As he is not entirely confident. I suggested the 2 docs get together and come up with one plan. I don't think it has all sunk in yet.

Thank you for your thoughts, prayers and well wishes and may God bless you all.
Rae

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

Doing the happy dance for you, rae rae!

Sounds like a fur ball. I told you not to give your cat that bath!

: )

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Congrats on the wonderful crazy news!!!..... I am so happy for you :) I have read many of your posts as I am pretty new here and have been sending hopeful prayers your way...
My surgery is next month for a partial kidney removal on my right side and right now I am trying to just continue with life as usual, not always easy but I cannot imagine what you have been going through.... Much continued good news and happiness

My very best to you

Many many hugs
KatfromFlorida

newenglandguy
Posts: 66
Joined: Jun 2011

Hi Rae Rae - what is the latest news? On your last post you mentioned getting lined up for more tests. Hope all is well.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

I see I've been neglecting this a little bit - my mom, who has late stage dementia and lives with me, has had some bad days the past week and I have had a bad case of vertigo that seems to get worse by evening the past week as well so my posting is going to be limited until I stop feeling like everything is spinning :-)

The doctors decided to go ahead with the original plan and I will have my next CT scan on Sept 14, with follow up and labs on Sept. 21 with Dr. Brinker in Grand Rapids. He is the medical oncologist. On a happy note, I saw my GP this week and she hugged me three times when she found out I didn't have cancer - she was surprised and said it was the best news she had all day.

I am going to start some motion sickness pills tonight to see if I can stop the vertigo. To all newcomers and well wishers - thank you - and to the person that posted from N. Michigan (sorry I forgot your ID)- I am also not far from T.C. but G.R. seemed to have a bit more to offer than T.C. - keep us posted on what's happening and feel free to send me a message here.

Rae

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

This is a topic we all think about. A couple of days ago I had a debate about it with my Wife, who knows more than I do about most things (but not golf). This was because her much loved cousin is in a bad way in London with liver melanoma. He's just survived a massive heart attack - he's a great fighter - so this was a terrible blow, given that he survived malignant melanoma (on his skin) about ten years ago.

I asked: how can you know whether you're dealing with recurrence, as opposed to a new cancer? I speculated that this could be crucial since the treatment might be different. My Wife was disposed to doubt this but neither of us knew. So, I did a spot of investigation and turned up a paper that happened to address precisely that question. I Googled "de novo v recurrence" and instantly hit on a paper entitled: "Definitive discrimination of cancer recurrence/metastasis versus de novo cancer formation" by Finkelstein et al. in the Journal of Clinical Oncology in 2005. I was delighted. It answers many of my questions. A few sentences in the Abstract give the gist:

"Distinguishing recurrent cancer from independent formation of a new cancer can be problematic."

"Major treatment decisions may depend upon the certainty of this differentiation."

The investigation the authors carried out vindicated the new approach they adopted and confirmed a new way of distinguishing new cancers from metastasised (i.e. recurrent) ones.

"Conclusions: Discrimination between cancer recurrence/metastasis versus new primary cancer formation can be objectively and definitively accomplished by comparative mutational profiling if microscopic analysis and special stains cannot provide adequate certainty."

As they recognised, "Major treatment decisions" may flow from the nature of the cancer - whether it's new or metastatic.

T.

PS I hope this may be a helpful distinction in the case of my Wife's Cousin and I know all here would wish him well as he enters a life/death course of chemo.

barbjc
Posts: 2
Joined: Jan 2012

HI Rae, my husband had his left kdney taken out due to RCC and then a few months later found it spead, to liver,lung and spleen, had a treatment called interleukin-2(IL-2). It was a hard road during treatment, but all of that cancer had gone, it is risky and a roll of dice. however the cancer did come back on his 3 motyh ct scan in the lyph node on lung. his dr ios having get a pet scan.

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