There was a time I worried only about my family’s health, and never even thought that I might fall ill. What conceit and what a surprise when my fun decision to do a little cosmetic surgery led to a blood test, which led to the ER, which led to eight months of fading away (nice way to say dying) and which led to the discovery of kidney cancer. Now my life is filled with kidney cancer patients and their stories, learning more about cancer than I ever thought was possible, and trying to find an ever-larger platform from which I can share the education I have had on this journey.
This journey might be entitled, “Stage IV Kidney Cancer: A Round Trip”, with hope that I have been to Stage IV and will always stayback at home, remembering and not reliving that strange land. The sheer luck of having found two of the world’s best kidney cancer doctors, one at Mayo Clinic in Rochester, MN and the other at UCLA in California really happened because I grew up in rural (that does not mean a suburb without streetlights) North Dakota. As a child, I knew my town had a hospital, but often had no doctor. The county nurse who gave us all shots and the chance to see Gail Salhstrom faint every year when she got hers was the only medical “provider” I ever saw.
Most babies were delivered with the help of a midwife, and there were many frantic car rides on country roads and narrow highways to Bismarck, just 145 miles away, and the longer ride to Rochester. Since that was a trip through most of South Dakota and deep into Minnesota, usually 12-14 hours of hard driving, I am not very sympathetic to people who do not want to cross LA freeways to seek out the best advice and treatment because of traffic issues.
Thus, when my highly-rated internist finally decided that my 6.6 hemoglobin –just half of normal–finally warranted an ultrasound on my liver, to “confirm the patient’s cirrhosis”, and found a tumor the size of baseball pushing my kidney out of place, I was tired of listening to him. Years earlier, a Beverly Hills pediatrician who grew up in Fargo, ND directed the man I would marry to ignore the local specialists and to go to Mayo. Thus, he avoided becoming a paraplegic, just as an article in the New England Journal of Medicine declared that his surgery was impossible to do, and if done, would be too late anyway. Good catch, Mayo.
So going to Mayo was a simple choice, and made all the difference. In short, they took the tumor out, found hundreds of tiny metastases in my lungs, and advised me to undergo the only FDA-approved treatment, high dose interleukin2 (Proleukin), and gave me back my life.
I now dedicate most of my life, personal and professional, to other patients. No one should have to be lucky enough to grow up in North Dakota to learn of all that can be done for kidney cancer, and indeed for all cancers. My mission is to help others learn more about this cancer and others, and how to empower oneself and to engage their doctors in their care.
I just found your blog. Great thing you’re doing. I’m 35 – I had a partial nephrectomy at 27 for a 2.5cm, clear cell, Fuhrman grade 3 RCC tumor. It was incidentally found on a renal u/s nearly 8 years ago. I’ve had routine surveillance and genetic testing over the last 8 years. I have 2 little girls – so this is something I’ll always think about – and pray for many more healthy years.
Dear Jill, sorry to be so late in replying, but I have had some help with my blog as to updates and so on lately. Thus, I am re-learning how to do this again!
It is so difficult to face this kind of cancer with young children, as that strikes at the heart of being a mother, and know that it is also a motivation to keep ahead of all the information, stay on top of all your options and so on. I am pleased to know that you got genetic testing, as that is exactly what should be done when someone is so young to be diagnosed. I do keep watch on this, and assume that you do also. If not, let me know and I can forward info re hereditary/genetic issues that might be relevant for you. Hope you are working with some academic center who tracks you as well.
Even with my own adult children, I worry that I somehow have put them at risk…too late to do anything, but to keep after them to monitor themselves. And to eat well, wear their seatbelts, get exercise and all the good things, but it does continue to haunt. Take care of yourself and give extra hugs to the girls for me.
Peggy Zuckerman
Hi,
On April 6th, my husband, Tom, age 62 had his left kidney removed because of a 8cm RCC. We were told it was a stage 3 because of the size and that there were no signs it had metastasized. On April 7, 2014, he had a large brain tumor called a meningioma removed. Typically, this type BT is benign but because his was large and aggressive with atypical cells, it was classified as a stage 2 and required 6 weeks of radiation. Naturally, we assumed there must be a connection between the two tumors but were assured there is not. Apparently it is just pure bad luck! I guess my question is, in all your research, have you heard of other RCC patients having tumors not related (for lack of a better word) to each other? We are still trying to process the events of the last year and would appreciate any insight you might have.
Thank you ,
Jennifer
Dear Jennifer,
The same thing happened to me, and to many others. A primary tumor like RCC does not protect you against a second tumor, though it sure seems as if it should! Not good planning on Mother Nature’s part, or as in my case, I can say I lived long enough past RCC to get another cancer.
I am confused with your dates above, but certainly hope that your husband is doing well after the brain surgery, and that this was NOT RCC, as that can be more difficult to handle with radiation. RCC is known to be radiation-resistant as is used in most cancers. It requires a more much directed beam approach, which is how brain mets from RCC are treated. At this time, he should be monitored for an return of the RCC, including bone scans and CT scans. Since RCC goes most often to the lungs, some recommend it be monitored with X rays, but they are just not as sensitive as CT scans. My own lungs were full of tiny mets, invisible to the x Rays and readily seen on the CT scan.
Your articles and messages are so informative – I’ve learned more from your comments than from my oncologist!!!
Thanks and best wishes…
Hi Peggy,
I can see where those dates could be confusing! Let me clear it up. Tom had the brain surgery last year in April, and the kidney surgery this April. So, he had both tumors at the same time but the meningioma had started causing problems whereas he never had any symptoms from the RCC so no one knew that was going on too! It was discovered accidentally during an x-ray of his back. He is actually recovering nicely from the kidney surgery but is unfortunately dealing with the after affects of the brain surgery. The radiation he had last summer was for atypical cells from the meningioma. He is going to PT twice a week which is helping but we have no idea how much strength he will recover on his right side. Even though this last year has been a nightmare, we feel very blessed that is has all been treatable so far. He will have a ct scan six months from surgery.
I want to thank you for all the research you have done and for sharing your knowledge with everyone, it has been so helpful.
Thank you,
jennifer
Peggy:
I stumbled upon your website while researching various cancers on the internet. Wow, I just assumed based on the content of what I was seeing that you were some expert oncologist in the kidney cancer field! This site is incredible. My daughter had a retroperitoneal paraganglioma tumor with mets to the spine. She has the sdhb mutation which puts her at risk for rcc. This is a great wesbite with great resources. Thank you for your doing this!!
Hi Peggy, I found your response to a question on a discussion site attached to my Oncologists website here in Orlando Florida. I have been battling RCC since it was discovered accidentally that I had an 11 cm tumor on my right kidney. I am a Nurse and somehow never thought this would happen to me. I underwent a nephrectomy in 2011 and was referred to an Oncologist for further care as two 4mm spots were noted on my left lung. Well its a long complicated story and I am partly at fault but I did not follow he advice to have the bottom of my lung removed and now feel like I am chasing this cancer all over my body. I have had a crainiotomy and two Gamma Knife radiation, IL- 2 therapy which partially worked. Now we are at a Mexican stand off this Cancer and I. I thank G-d that I was in as good health otherwise and fairly strong to undergo all I have. I like you, know more now than I did. As a nurse you would think that I would be and expert, but it really is all new to me. I am looking forward now to the PD-1 drugs being trialed now and going into production. I hear good things about them and have talked to my Oncologist.
It’s funny that you talk growing up in North Dakota. When i was seven I went with my Air force Dad to Minot. It was an experience. My son has recently married a young woman from a farm family out near Fargo and they spent last Christmas out there visiting. We are from New Hampshire originally and even Ben was amazed at how cold it was.
Anyway, I am getting long winded, but I have never met a nicer more helpful group of people then those going through the roller coaster Journey of Cancer in any form. Keep up the good work
I have read lots of your replies to patients on SP and have always admired your wisdom, knowledge and commitment to others with this terrible disease (i go under Smithbroth on SP).
Your site here is superb! when i was first diagnosed with KC I was shell shocked, frightened, ignorant of what treatments were available and of what to do! I wish I had been able to find a site like this. Thanks mainly to my family who got to work researching KC treatments (I was given 18 months by my Onc at Leeds) I found out about IL2 and the fantastic work Prof Hawkins was doing at the Christie. I like you Peggy are one of the very lucky ones to have had a complete response (2 years this December). Your blog is a great source of information for the newly diagnosed and for those battling this disease. Well done Peggy x
Thanks for your words of wisdom and encouragement. My friend discovered your site while searching for information on RCC.
I am a 76 year old male living in Tucson, Az., receiving care from the VA. Originally from a small town in South Dakota. Father grew up in rural North Dakota.
I was diagnosed with stage 4 MRCC after a lung biopsy in July of this year (2015). Oncologist gave me 1 to 3 years
Right Nephrectomy in August. Pulmonary Embolisms in both lungs in September and Pancreatitis caused by Pazopanib in October after 6 weeks. Now on Sutent, 4 weeks on and 2 off with minimal side effects.
Now searching for RCC specialist for second opinion, so far, unsuccessfully in the Tucson area.
I have also been following your blogs. Diagnosed with MRCC and mets to both lungs Jan 2016, radical nephrectomy of left kidney Feb 2016, started votrient March 2016.
After 6 weeks, it seemed to be working, but complications of liver enzyme sky high and jaundiced. Oncologist suggests I start Opdivo rather than other
targeting drug when liver gets settled down. Will have repeat scans soon. Do you have any thoughts on this or others that have had these complications?
I would add another issue to discuss, and that would be whether you would be a good candidate for high dose interleukin. If the doctor dismisses this quickly, ask the reasons, and see if he has had any real experience with high dose interleukin. It seems to work best on generally healthy people (get the liver settled down, of course), and those who have lung mets,clear cell type, and when givenfairly soon after diagnosis and surgery. Since this is an old drug, and was approved in 1992, there are real limitations to the data in that trial, which do not give a true picture of the modern delivery of the drug. It was a Phase II trial, measured only complete response, and partial responses that required a 50% reduction in tumors to be classified as such. Also, there was no consideration of which types of RCC, and the stats indicate that many likely had unusual types, still quite difficult to treat. There were a few deaths in the study, due to infections from the way the patient was kept on central lines, again not the way it is done right now. I feel strongly that any doctor who does not give a fair consideration to this is simply unaware of the current status. If needed, get a second opinion from a doctor experienced with giving it.
Just as you would not expect the cardiologist to understand every single approach to every type of heart problem, the new tools, the integration of surgery with varying techniques, it is equally hard for the general oncologist to understand everything about kidney cancer, be sure you are working with the right person.
Opdivo is an immune therapy as well, approved recently for treatment as a second-line. THat trial granted increased overall survival, but was compared to one of the weakest drugs in the second-line category. HD IL2 is still a first line treatment, as is Inlyta and Sutent. All need to be reviewed with your case in mind, your general health profile. I have a blog post about the approval, which will give more details. In general, it is another tool, but not necessarily going to change the world–and we still have to sort out the long-term value of it and other drugs. I am 12 years past my diagnosis, alive thanks to IL2, so am obviously biased to see that patients get the opportunity to have that response!
Wow, so glad I found this. I’m going into the 2nd line phase. Docs says to get off Sutent for 2 wks as a dry out period before trying anything else. Inlyta and Opdivo are in line as well some clinical stuff which I am considering. Would be be great to have all data organized and easily findable about all forms of KC! Keep going! Cri8er4u2
Dear Mark,
If Sutent is no longer working for you, as evidenced by some growth in tumors, this may indeed be the time to go on to another drug. Depending on your general health, age, type of RCC, and so on,you might also want to consider discussing High Dose InterLeukin2 to the mix of those treatments to be discussed. The reality is that few doctors have much, if any, experience with kidney cancer patients, and fewer still with HD IL2, so it is hard to get a fair analysis of the treatment and how you might benefit. Since you mention ‘clinical’ stuff, does that mean you are considering a clinical trial? Happy to help you understand the range of options that might be available there. Peggy
Fabulous site, Peggy! I do hope your readers check out the information you found about compassionate use of drugs that are not yet approved for life-threatening illness, specifically the piece from AB Science.
Just discovered your blog. I’m 66 and have Clear Cell in the lymph nodes of the trachea. Had left kidney removed in 2009, which was very large and full of cancer. (Contained) Only received X-rays in years following, until they found additional tumors early this year. Being treated by MD Anderson. Had Gamma Knife for a couple of small spots in the brain. Now on Votrient, as I could not qualify for Trail, due to pulmonary embolisms. On blood thinner to help with the blood clots. Been on the Votrient for 1 month now. Doing much better, with no issues in blood work so far.
Looking forward to following more from your site.
Dear Rich,
Glad to hear that you are working carefully with experts, as they certainly are available at MD Anderson. Your story of a late return of the disease–it is never really ‘contained’, as the buggers travel early in the process–is far too typical. Hope that you are also being seen specifically as to the tendency for pulmonary embolisms. Not easy to coordinate your care, but do insist on it. Votrient is known to be hard on the liver, and keeping a good eye on those readings is important. Wishing you good and ongoing success with your response.
PEggy
Peggy,
Thanks for the reply. In regards to the late finding of my reoccurance; I met another MDA patient on his return for annual follow up. He informed, that at MDA, they always take a CAT scan to follow up kidney removal. That was not done by my Drs in NC. They wasted at least 3 year’s, as I was having various tests for low energy, bowl issues and fatigue. If I ever meet another person that has had a kidney removed, I’ll advise that they should have at least one CAT per year as a more correct follow up. Appreciate your view on this subject.
Dear Rich,
It is far too common that doctor do NOT understand or use the basic guidelines that would require CTs for many patients. When an organ is taken due to invasion by a tumor, it is essential that patient get the most accurate imaging. In addition to the annual scans that are often the most effective in monitoring the recurrence of disease, it is also important NOT to think that chest X-rays are truly beneficial. Even though the favorite spot for kidney cancer to move into are the lungs, and x rays are often recommended, there is a huge difference between what a CT can find, and what an x ray can reveal. Better to find out about any return at the earliest possible time than waiting until the ‘old-fashioned’ x ray shows any mets.
A number of years ago, the issue of x rays of the lungs to find cancer in smokers was ‘shown’ not to be effective in diagnosing lung cancer early enough to benefit the patients. Sort of a ‘too late, Charley” kind of thing, and thus the lung x rays were discouraged. THe appropriate thing would have been to find a more sensitive imaging of the lungs, which is provided by a CT, even a low dose CT. Finding the tiny lesions sooner, not having to wait until the less sensitive X rays reveals them…a lot better for the patient.
We RCC patients can learn from that–do not accept that an x ray will be the right thing to find new and tiny mets. Oddly enough, patients can understand that hitting those mets sooner is a better idea. And you would hate to think that you did not seek out these mets, just because the x ray is more convenient or such. We don’t really like to hunt for more cancer–rather like we are asking for more of the same–but do need to remember that it is easier to treat a new recurrence, than one that has settled in nicely in your lungs!
Peggy
PS After 13 years post HD IL2, I still get a CT scan. the issue of the radiation RISK is far less than the reality fo the RISK of kidney cancer recurrence!
I am getting CT scans every 3 mos. Lung jets are major concern. Reading this helps me feel more confident in my team. It has been a year since kidney was removed.
Dear Kare50,
You might like to join a group of RCC patients who can also keep you on track as to new info, insights into their own care and the doctor’s advice. Go to http://www.SmartPatients.com. I also comment there and find that this forum is the best of all those available for kidney cancer patients. Good luck, Peggy
Hi Peggy
I have just come across your blog through another site where I was researching the benefits of MGN-3.
My husband has Stage 4 Kidney Cancer which has metastasized into his adrenal gland and lungs – he is 39 years old. He had his kidney removed successfully 4 months ago, however this latest news has been devastating. I am looking into all possible options and wanted to get in contact as you will understand what we are going through. We are based in the UK, so assume the treatment offering will be different – he has been offered 2 different drugs (Sunitinib or Pazopanib) and a clinical trial involving combining drugs such s Lenvatinib and Everolimus. Are there different/ better treatments being offered in the US? Did you find changing diet and adding supplements helped? Is there any support forums you can recommend?
Sorry for all the questions, I just don’t know where to start – Mark (my husband) and I have only been married for 18 months and had plenty of grand plans, the consultants don’t seem hopeful and the word ‘incurable’ has been pretty hard to bear. Any help would be most appreciated.
Thanks
Emma
Dear Emma, The most important thing you need right now is an expert in kidney cancer, as your husband is extremely young to have the typical case of kidney cancer. It may be that he has a genetic predispostition to get this, and even if there is no apparent history in the family of this, he still NEEDS to have review by genomic testing. That can give more information about the type of cancer. The most common type of kidney cancer is clear cell, and yet it can be subdivided according to certain molecular characteristics into 4 subtypes, with one of those especially dangerous.
If he is being treated by any general oncologist, he is likely not to get the best possible care, and as this cancer is relatively rare, and the medications (except for high dose interleukin, which saved my life) are not well understood by most doctors. You really must insist on getting to someone like Martin Gore at the Royal Marsden or Richard Hawkins at the Christie;James Larkin at Institu of Cancer Research; Thomas Powles at Barts Cancer Institute. Patient ADvocate Rose Woodward of the Kidney Cancer Support Network UK http://www.kidneycancersupportnetwork.co.uk rose.woodward@btinternet.com Get through to any and all of these people, and with any reports that you have–in the US, we have an absolute right to the medical records.
I also recommend http://www.SmartPatients.com which has patients in the UK and throughout the world. Very worthwhile group. As to the meds, they need to be chosen on the basis of the type of RCC that your husband has, so understanding that first is a must. HAving options to a trial can be great, but there can be many trials, so again–back to understanding while that trial vs another.
I simply cannot recommend any diet or supplements, as the reality is that the immune system has lost control over this tumor, and all the vegies in the world will not reverse that. The meds Pazopanib and/or Sutent are also good first line drugs, also used commonly in the US, but they do provide a cure as such. They could cause shrinkage, which would be great, and could slow things down. The newest drugs such as Nivolumab are recently approved,are likely available.
Since my own 13 years without either kidney cancer and without ongoing medication came due to my response to high dose interleukin, which is best given in certain centers, and with carefully chosen patients. Your husband, as you describe him, may be an ideal candidate. Hawkins runs a program to deliver this immune enhancing drug, which requires hospitalization. After a total of 4 separate weeks of that treatment, which is like being given an extreme type of flu, my immune system finally recognized the 100s of lung tumors that I had, and fought them back into a complete disappearance. Only someone like Hawkins will be able to assess fairly if your Mark is a good candidate, and other doctors may only know if from the early days. Quite different now, and the opportunity to stop this disease permanantly can come with IL2(Proleukin).
I will try to send you some UK based info on HD IL2 to your address, so that you have a start on this. I would appreciate knowing the size of the tumor, its pathology type, and who is treating your husband and at which center. This info can come to me privately at peggyzuckerman@gmail.com
Wish I could be more precise, but you are on the right track to seek more help and from the best of the medical experts.
Peggy
Peggy this is amazing information! I will email you privately with the details and we have an appointment with James Larkin just booked in. I have just read this out to Mark and for the first time in ages we feel like we have some hope. Any additional help you can give us would be much appreciated. Many Thanks x
After reading most of the comments here (after you directed me to your blog) I am amazed how lightly my GP has referred to the tiny nodules on my lungs. CT and MRI did suggest 3 month CT follow up but little to no emphasis was placed on the possible seriousness of their presence.
Just about a month ago I was diagnosed with RCC. My GP got moving right away setting me up with scans, MRIs and a urologist. I am a 72 year old female who thought she had sciatica for a year and a half. Hence MRI and discovery of the tumor.
Perhaps not to alarm me, the diagnosis was presented in such a way that I understood that if, as was probable, the mass was cancerous, it would be removed, the cancer would be gone and off I go to a cancer free life and no complications.
When I decided to go out of town to a specialist, my GP suggested I not get ahead of myself and that it probably wasn’t necessary yet. WOW. After advice on one of the other communities here, I decided to go where my instinct told me to go and I made arrangements at Johns Hopkins in Baltimore. I cannot believe how much I wasn’t told. This blog has given me so much more to question and comprehend how serious this all is. I truly believed this was going to be a walk in the park. I did not understand what the fuss was about. After all I had a very small mass, less than 3 centimeters and contained. The lung nodules were hardly noticeable and not to be concerning at this point. Thank you so much for this blog and for directing me here.
I live near Scranton PA.
Hi Peggy. Your blog is wonderful and gives many patients hope. I was diagnosed with stage 4 RCC in January 2018 at the age of 60.The doctor basically told me “get your affairs in order” and left the room. No hope, no mention of treatment. My tumor is classified as T2, NX, M1. I have a large tumor 14cm x 10cm on my left kidney with dozens of mets on both lungs with the largest 2.3cm. Doctor said it looked like popcorn. Spread to adrenal gland and lymph node on left kidney. I started Cabozantinib in February and it shrunk the tumors (in lungs and kidney) by about 30% and then stopped working and slight increase on the size of the kidney tumor and stable in the lung mets. I took Cabozantinib for 3 months. I went to the Cancer Center of America in Goodyear Arizona from my home in Reno, Nevada. On August 5, 2018 I started immunotherapy with Yervoy/Opdivo combo with incredible results! After 12 weeks, my tumors in lungs shrank 70% with many mets no longer visible. My kidney tumor shrunk 50%. Oncologist said I was responding excellent to the immunotherapy. He is going to keep me on the opdivo immunotherapy for 9 months and if they can get 90% shrinkage on the lung mets they will do a Cyroreduction Nephrectomy, to remove the “mother ship” as he put it. I am determined to be cured, but doctor feels that cure is not likely but treating it like a chronic illness is. I was given no hope to survive back in January 2018, but this is the best I’ve felt in years. Blood work and all my vital signs are great, and I’ve regained 25 of the 55lbs I lost. I hope and pray it can continue for many years. Thank you again for all you do for others!! Sincerely, Adam