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Getting a little frustrated

DSFrey
Posts: 69
Joined: Jan 2014

I started having an intermittant cough over the past few weeks that has been slowly increasing in frequency. Last week I started getting some chest pain associated with it so I went to my PCP to check up on it. He listened to me breathe and had a chest x-ray taken which came back clear. So he diagnosed me with bronchitis and pleurisy. He has me on steroids for the inflammation and antibiotics because he believes a bacterial infection is the cause. No lab work other than the x-ray so he's just guessing its bacterial in origin. This was the first time I've seen my PCP since I had my partial nephrectomy in February so after addressing my main issue he asked me if I had seen or been referred to an oncologist. Of course I told him no, that my urologist that did my surgery didn't refer me to an oncologist, but only had me scheduled for abdominal CT scans because he said there was next to no chance of a recurrence since it was small and encapsulated. So my PCP referred me to some oncologist and said I should probably get a PET scan. Well, its been nearly a week and the oncologist's office I was referred to has yet to call me to arrange an appointment. I'm guessing that's the oncologist's way of saying I don't need his services. Of course I later read that bronchitis can be caused by cancer, and I know that could be missed by a chest x-ray. So now I'm thinking I might actually need a chest CT to rule out cancer as the cause of my mysterious bronchitis, not a PET scan. But it seems no one wants to do that or even see me since I shouldn't need their services. So I guess I just finish out this batch of antibiotics hope that it does resolve my bronchitis and the pleurisy associated with it. To my PCP's benefit he did say for me to call him back if this stuff isn't better in 10 days so he can take another stab at the problem. 

icemantoo's picture
icemantoo
Posts: 3317
Joined: Jan 2010

DSFrey,

I have had a chronic cough for the past 2 years up until a few months ago. I saw an ENT doctor, a Pulmonologist and GI doctor besides my Uro for follow up and a Nephrologist for Kidney follow up and to monitor Blood Pressure in lieu of the GP. Finally diagnosed after an Endoscopy as Barrets Syndrum and reflux for which I am taking various medications and have rearanged my eating habits. Nothing to do with RCC. Just throwing this out as one of many possable causes of chronic coughs. Also had some chest CT's thrown in which although showing small nodules ruled out mets to the lung.

 

Icemantoo

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Yes, Iceman, I know the cough you can get with GERD/Acid reflux. BUT  since I started Probiotcs each morning, I have little to NO acid reflux. Do you take probiotics?

 

Jan

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Find a new oncologist if necessary but get a CT-scan of your Chest/Abdomen/Pelvis with contrast.  Refer to this in the future as your baseline.  If it is clear (as it likely will be) you will have done the prudent thing and can rest easy.

No one should ever under-estimate RCC.  Statistics refer to general (large) populations.  But you are an individual.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Sorry for the cough, bet its annoying. So if your doctor said its bronchitis are you getting better?

I had surgery 12/30/13 and until being on here, never was recommended to see an oncologist. Rightly so.

I am due to have my 6 month follow up scans/blood work next month.

But I did meet with an oncologist just for his opinion on path report and follow up.

Seems I am right on schedule and do not need to continue to see an oncologist unless

I recognize new signs/symptoms. I do have this chronic back pain and my Neuro did an xray which was neg.

But oncologist did say that an xray is just a "sketch" and nothing warrants a CT at this time. I am getting one next month anyway.

So now I have a face, a person (oncologist) just in case in the future I may need.

Now why you haven't heard yet, may be your insurance needing the referral and processing it. A week is a bit long (esp when you are waiting)so I would check with your insurance first. Maybe this Oncologist is not in your plan, or they have not yet received the referral/approval from insurance. CALL them and CALL your referring doctor's office. Who knows, maybe someone dropped the ball.

Good luck and let us know how you are doing,

Jan

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

DSFrey,

     Call them again! No body is going to take care of you, but you! I was a basket case when I found out, and I had numbers for about 3 oncologists and I called all three.  Don't wait, make things happen for yourself.  Wishing you the best!

                                                             Prayers of good health,

                                                              Brenda

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

Try doing what I do to get around all this Urologist stuff. Its so bad here in Canada to get decent medical you have to scheme. Go to an emergency ward and tell them you have a problem breathing etc and you had a prior RCC surgery. They will schedule you for a next day CT most likely and you'll know whats going on, no waiting for a pathology.  How do I know this....I had to do that because after 1 year post partial and 1 CT scan followup the urologist tells me thats it, no more CT's, we'll do a ultra next year and thats it. He said its too expensive and they need the CT's for more serious patients. I was thinking like "what the hell am I doing here" Was told from family doc the first 2 years are crucial, should be one every six months then 3 years of 1 a year.  Can't wait to go back to my America. Here in Ontario they actually have docs talking government funds when in fact its the tax gouge center of the universe. Just saying, worth a try.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

DSFrey,

If you think the doctor doesn't want to meet with you, definitely just get a different one, but from what I am reading, it seems like you have a customer service issue with the office staff.  Just keep calling them until they get you in.  One of the main things I have learned since my diagnosis, is that most medical facilities could usually learn a thing or two about customer service from McDonalds.

To put this into perspective...  When I wanted an Oncologist appointment just for peace oif mind, I just called the Cleveland Clinic and scheduled an appointment.  

I just picked the one off their website who had the most RCC experience and asked for him.  Within one week I had an appointment with Dr. Brian Rini, who is actually the investigator on a lot of the trials that you read about on this site. 

The vast majority of these types of oncologists are meeting with people that have a pretty poor prognosis, so its probably a pleasant change of pace to meet with people like us who were caught early. 

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Nobody will look after you but you!! Call again!

And JKNorth....you have some food for thought. I am living in Ontario as well. Although I had no problem getting in for a CT scan after my initial ultrasound showing my mass, and have now had my first post CT scan....if it wasn't for my lesion on my liver, they would be following up with an ultrasound in October instead of a CT scan. Maybe it is a good thing to have a lesion on my liver! But if the lesion is stable in October I will be getting ultrasounds every six months - and I was stage 3 RCC. And yet, my husband had a fall while working on the roof last year and broke his arm....he was instantly given a CT scan on his arm (not sure if there are different types of CT Scan machines???). However, from what I have read here, there are problems in the U.S. health care too - all depending on the type of insurance you have. When I was first diagnosed, a friend of mine said "just get yourself to the U.S. and pay for their care if you can." I think the health care is top notch in the U.S. - but you need money - or great insurance - to pay for it.

That being said, I was very fortunate as my tumor was very large and the urologist was not comfortable treating me - so he referred me to his college buddy in Hamilton who happened to be one of the top notch uro-oncologists in Ontario.

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Hi JoJo.  Please keep in mind that ultrasounds of your liver will not be sufficient to determine what is going on in this organ.  In fact, even a CT-scan of the liver is pretty useless you undergo that CT-scan with contrast.  This is because it is very difficult to measure the margins of a met in the liver without contrast - and it is even harder to make out small lesions should they start to appear.

My impression of the major difference between health care in Canada vs. the US regarding mRCC is that in the US we have access to many more (new) targeted drugs and therapies.  Right now that is not an issue for you - and hopefully it never will be.  But, for example, if you should decide you want to undergo HD IL2 immune therapy you may not find any easy (or cheap) access to it in Canada.  Please correct me if I am mistaken on this.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Nano

I am scheduled to go for a CT scan in October because of the liver lesion - otherwise I would have only had an ultrasound next time. I am a little grateful that there is a lesion there, so I get one more scan. Maybe the ultrasound is adequate for the next 3 years, but given that I have a 40% chance of recurrence (and maybe even more as the doctor is sure that living with someone who smokes around me will increase my chances even more - working on that one) I would feel better if I had CT scans for the next 3 years instead of ultrasounds.

As far as the drug immunotherapy only in the U.S....that has been a fear, deeply buried inside me. I wondered if that would be the case - Canada has such strict rules about that kind of stuff...maybe that is why the first urologist said to me that if I was stage 4, I was "done". But since I have been on this site I have been happily confident that if things got worse, it is most likely treatable - because if caught early, it could be removed, and also there would be trial drug therapies. I am feeling a little deflated right now. Ironic, isn't it? I have always been so grateful to have free health care in Canada.

On the other hand - there still is a 60% chance that I won't have recurrence...will keep holding onto that and live as healthy as I can.Sealed Thanks for your input, Nano!

 

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Well I certainly didn't mean to be a downer, JoJo.  A lot can (and will) happen over the next few years.  The new immunotherapies (i.e. anti-PD1; anti-PDL1; anti-CTLA4) will likely start to be approved here in the states soon - and perhaps up in the Provinces as well.  Actually, you might check to see if Ipilumumab (an anti-CTLA4), which is already FDA approved in the states for the treatement of Melanoma, is available up there.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

No apologies necessary Nano! it is good to have the right information. Definitely food for thought.  :)

a_oaklee
Posts: 564
Joined: Nov 2013

dsfrey.  I sincerely hope that you are beginning to feel better, have less coughing, and relief.  Your PCP is on the right track by referring you to an oncologist.  That should be a big clue to you.  I'm in total agreement with Nano that at the very least a CT Scan of chest, abdomen, and pelvis could serve as your healthy baseline for future scan comparisons.  I think that everyone on this board has learned to navigate the obstacles that we have encountered.  It takes time.  Definitely a learning curve.  We have learned to be our own advocates, because no one cares more about us, than us, as individuals.   Regarding appointments and referrals, you need to be persistent.  Don't naively depend on office staff to do their job, or for the mail to be delivered and not lost, or for the messages to be left properly on your answering machine.  There are a multitude of things that can happen.  At the time of your doctors appointment, ask what the process is for referral.  When will you be contacted.  how will you be contacted.  Who is the doctor you are being referred to.   How soon will your appointment be.  who is the contact person at your PCPs office?  These are things that you should be told before you leave your appointment.  You can be (what I call),politely persistent.   It's your life Frey.  My husband and I did not start out this way, but it became necessary in our experience to become our own best advocate.  I wish you the best.    Annie

 

DSFrey
Posts: 69
Joined: Jan 2014

Thank you for the sage advice. Being the isolated introvert that I am, it sometimes feels like I'd rather die than make a bother of myself. As far as the cough goes, its no better, slightly worse actually, but the full 10 days isn't up on the antibiotic regimen so I'm not panicing yet.

a_oaklee
Posts: 564
Joined: Nov 2013

Frey.  I am so sorry that you feel that way....(that sometimes it feels like you'd rather die than make a bother of yourself).  If you were here, I would give you a hug.  I really hope that the sentiment that you expressed is transient, and it is just because right now you don't feel well.  Sometimes when I don't feel well, I just don't have the energy to take care of myself either.  Perhaps you can think about someone in your life that could do this kind of stuff for you temporarily.  (spouse, friend, relative, etc.).  Some people are great organizers and have no problem whatsoever being "politely persistent".  My husband (who has RCC) is very quiet, patient, and trusting.  I think I have more experience than him in negotiating healthcare concerns.  Also when I became a mother, I also became a "mother-bear" when I needed to be one.  I found my voice when I had kids.  I think when something is incredibly important, we owe it to ourselves to do whatever we can do.  We have to step out of our comfort zone, perhaps handle things differently than we would normally.  Don't be too hard on yourself.  I'm an introvert too, and this is a really difficult thing to deal with doctors, hospitals, insurance companies, pharmaceutical companies..and the list goes on.  Over time, stuff happens, and it becomes necessary to fight for what you want and need.  Let me tell you what happened to us......

We went to one of the top 10 medical centers for RCC.  They did not want to remove my husbands tumor as he was Stage 4.  We could not get past the decisions of the tumor board and the oncology team, nor get appointments with the original highly acclaimed Renal surgeon that was going to remove the tumor until they discovered he had bone mets.  We pleaded.  We followed their suggested course of action for one year.  We thought they were the experts.  My husband was in his 60's and perfectly healthy and active.  The tumor was only 5cm but it grew into the vena cava and was blocking blood flow from his legs.  His legs were enormous and he couldn't bend them at the knees.  He could no longer wear socks or shoes due to how huge his feet were.  We knew he was going to die without surgery, but they refused to operate.  We were told he could die during the surgery, and that it would only prolong his life by 4 months.  (which I have never been able to substantiate that claim in all the literature I have read).  Those people were not listening to us, and we couldn't get what we wanted.  They knew better than us.  One oncologist there told us if you want to live you got to get out of here and go to another even larger medical center.  We got our primary care provider to get a Saturday appointment with a surgeon at the other place.  Everything with the surgery went really well.  All the swelling disappeared.  My husband has been on Inlyta for over a year and has no evidence of metabolic disease.  He does take pain pills, and other prescriptions for side effects but life is pretty good.  Thank God we found help and fought for his life.  We were so new to this.  We've learned that it is kind of up to us with this RCC illness.  If there is something we want, we have to find it.  Someone here wrote about "who is in charge?  Which doctor?", and we had that same thought for awhile.  It took us 1 year to realize that we are the ones in charge. 

Please do what you have to do to care for yourself, or find someone who will help you.  I will continue to hope that your health will improve.  If you don't feel better, you really should call your doctors office and tell them.  Remember that you are the one in charge of your own life.  Sincerely,  Annie

 

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

Re the myth: "free health care in Canada"

Really glad you got yourself an oncologist in Hamilton like most prefer and don't want to fuel the US and Canada health standards questions....but....being a duel citizen and lived and worked in both sides I always get a kick out of that free healthcare that canada brags about. With the mega Fed income tax then add provincial tax and then add 13% GST tax, it pretty much wipes out peoples takehome pay in Canada it is not free healthcare at all. I would rather pay my approx. 20% total tax in the US and get a insurance plan for $150 a month with Kiaser Medical anyday of the year. Still way ahead in the US with cash and at Kiaser the wait for an MRI was like 2 weeks instead of 6 months and waiting for emergency did not exist. County hospitals may be a different story, dont know. Anyway.....if I'm still here and don't get the right care and feel the need for a CTscan in 2 years will go do the emergency visit and say Im in pain and get it done that way. In canada its very swamped looks like, so its survival tactics.

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

I am sorry i have been a member since 2011 and my comments have not always been well  recieved very well but i am sorry but dude i will go out on a limb here you had a partial which means you had a baby tumor so please can some one explain to me how that could have spread and then have the tumor or tumors cause you to cough.I am sorry it is probabally a virus which will clear up on its own good luck to you DS.

DSFrey
Posts: 69
Joined: Jan 2014

That wasn't my concern. My frustration was over the procedures. My referral to the oncologist had nothing whatsoever to do with my current chest malady. My urologist should have referred me to an oncologist for proper follow up since the urologist was not going to do a chest x-ray or chest ct which most would agree is part of the gold standard follow-up. Instead I had to see my PCP and have him refer me to an oncologist. Also my PCP is expecting me to get a PET scan which I understand is pretty much useless for monitoring RCC except for more aggressive variants. But if you really want to understand how a small tumor in your kidney can spread to your lungs just ask some that has had to deal with it. While pT1 G2 tumors are unlikely to metastasize, they can. When the surgeon removes the tumor, he/she is only removing the gross portion of the RCC, not necessarily all of the microscopic portions which can be left to undergo angiogenesis in another part of the body that it settles in. 

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

You get referred to an oncologist once the cancer has spread or i guess you could discuss your case with an oncologist concearning your pathology results and follow up scans then again i feel most qualified urologist can order follow up ct scans.DS  sorry for now i feel all you need to do is your follow up scans remain vigilant and for now thank your lucky STARS oh and yes hang around

DSFrey
Posts: 69
Joined: Jan 2014

I know scans are the required follow-up, that's the point. I can't get anyone to do the chest ct as part of the follow up. My PCP can't order a chest ct, he's already tried and my insurance denied it. My urologist that did the surgery has abdominal ct scans planned but does not plan on monitoring my chest  with either a ct or even a plain x-ray for possible mets developing there. Hence the need for an oncologist that can simply monitor me and order the desired scans of my chest. And regarding that coughing issue, seems the 10 day regimen of antibiotics I was given didn't quite do the trick. Still have the cough though not as bad. On the plus side the steriods I was prescribed did at least help with the pain associated with the cough so it doesn't hurt to cough at the moment. I'll give that more time, maybe the cough will eventually stop or just not be painful any more. If it starts to be painful again then I'll ring up the doc.

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