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Treatment Center of America

jchurchwell7
Posts: 7
Joined: Nov 2010

Hi there, my mom is 57 yrs old and was diagnosed yesterday with RCC. We are not sure of her stage but they think it may have mets to the lungs. We are waiting for her to have her radical nephrectomy before we will know for sure. Does anyone know anything about Cancer Treatment Center of America? I reached out to them today and want to fly there with her on Wednesday to see about our options. She lives in GA and I live in Ohio. Her doctor at home recommended for her to see doctors at Emory University since she lives close to there but I just feel that the Cancer Treatment Center may be a better option.

Has anyone ever been to The Cancer Treatment Center of America? My mom is my whole world and I need her in my life so I am going to help her fight through this.

Thanks for the feedback,

Jessi

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

A similar inquiry was made a few months ago and I did a bit of googling about CSA. They are a for profit institution which provides treatment and comfort to people with serious cancer issues. Some people swear by it and some think it takes advantage of people.
Let me try and approach this as an 8 year survivor of RCC whose only treatment has been the initial nepharectomy. Approximately 50 to 60 % of people with Kidney Cancer are cured by the nepharectomy. Those whose cancer has metasticed need further treatmants and their prognosis and the drugs and treatment available have improved significantly over the last 8 years. Any teaching hospital like Emory has what is necessary to initially treat Kidney Cancer and that treatment is by a nepharoctomy or partial nepheroctomy. After the surgery and the initial post op consultations if she is not cured you can put all of the options on the table, but take care of the surgery first.

jchurchwell7
Posts: 7
Joined: Nov 2010

Thank you so much for your reply. The main reason we contacted CTCA is bc we were told that the docs at Emory wouldn't even be able to get around to talking to my mom for at least 2 weeks. My mom does not want to sit around with this looming over her for that long. She wants the kidney out of her asap. If she waited for Emory then it could be 2-3 weeks before we even get started. CTCA is talking about flying us out (at their cost) within the week.

I have a question. Was your cancer metastatic? This has really hit me like a ton of bricks and I just want to do what is best for her. I know she doesn't need to worry about anything so I am trying to get our ducks in a row.

Thank you,

Jessi

amurillo63
Posts: 29
Joined: Sep 2010

Hi Jessi,
You should look into Cancer Control Society 323-663-7801 They can give you a list of hospitals and they can give you contact numbers of Cancer survivors that you can speak to personally. I hope you and your mom will find the best treatment hospital available. Iceman is correct the most important thing is to get the surgery done. That is probably the only good thing about Kidney Cancer is that if it has not spread then remove the kidney and your mom will be cancer free. If it has mets to the lungs then you will have some decissions to make regarding treatment when the time comes; But again first things first get the surgery behind you! I will keep you and your mom in my prayers. I hope you will let us know how it goes.
God Bless!
Anna

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

Kidney Cancer grows very slowly and most of us had it for years before it was diagnosed. Where the diagnosis indicates that it may have spread they are pretty quick about arranging surgery. Otherwise we tend to wait. I waited 2 months between diagnosis and surgery. Fortunately my Kidney Cancer never metastisiced to other organs and 50 to 60% of us are lucky enough to fall in that catagory. I have an earlier post you can check which refers to a free mentoring program thru the Cleveland Clinic and their 4th Angel program which you may find helpful. As you read thru these posts and obtain information about Kidney Cancer you will see that it is quite different than other Cancers which usually encompass chemotherapy and similar stories. For better or worse Kidney Cancer involves surgery which can not be sugar coated. I had my surgery after I just turned 59 and I went water skiing 11 months later so I expect nothing less from your 57 year old mother.

jchurchwell7
Posts: 7
Joined: Nov 2010

Icemantoo,

I think waiting will be the hardest part. I have never been very patient (I get that from my mom) : ) I am going to try to speak with her docs at Emory after they do the scan on Monday to find out what all the waiting is about. It is hard being 500 miles away from her right now. I would love to have her here with me.

Do you know much about the Cleveland Clinic? I only live about 4 hours from Cleveland. My husband is an anesthesiology resident and he had mentioned something about that clinic as well.

I am so thankful that you are sharing your story and that you are active here on the website. Thank you so much for taking the time to contact me back. I am so glad that everything is going good with you now!

Sincerely,

Jessi

jchurchwell7
Posts: 7
Joined: Nov 2010

Anna,

Thank you for the information..it is nice to know that people care enough to talk to me. I will call the number you provided and see if I can get some advise. Mom mom is going to keep her appt at Emory for this coming week (doing the whole body scan) and I then I think we will talk to CTCA later in the week. We can just listen to what they have to say, it can't hurt.

I will definitely keep you in the loop with everything. Thank you so much for the prayers..I AM A FIRM BELIEVER IN THE POWER OF GOD!!

Anna, do you have RCC?

Jessi

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

The Cleveland Clinic is one of the top hospitals in the Country although I have never been there. They have a large Urlogy Department which deals with Kidny Cancer among other things. I was able to obtain a free copy of their book 100 Questions and Answers about Kidney Cancer by registering on their website. Their Cancer institute sponsors the 4th Angel Mentoring program. Since your husband is an Anesthesology resident he should be able to get some answers for you including making inquiry of the urologists, surgeons and oncologists at the hospital he works at about Kidney Cancer.

amurillo63
Posts: 29
Joined: Sep 2010

Hi Jessi,
Yes I have RCC. I was diagnosed on May 5, 2010. I was anemic at the time. and due to my beliefs I don't accept blood transfusions. When I went to see the doctor that was suposed to do the surgery he was very positive, he laid out a plan to do Iron infusions and Procrit to help build my red blood cells also to do a Arterial Embolization to cut the blood supply to my right kidney and hopefully kill of the turmor then begin a drug treatment while I am waiting for my blood to build and that sounded great but my oncologist was very negative about my choice to not accept blood and did nothing other than the iron and procrit. Unfortunately my count never got to 16 where they wanted it. When my urologist the one that was going to do the surgery told me that I may never be a candidate for surgery I had a melt down but then that is when I very agressively took things into my own hands and started to essentially fight for my own life. I complained to everyone who would listen and looked for hospitals that specialized in doing bloodless surgery. Finally, after 5 agonizing months I had my surgery at a great hospital with great success! Jessi I know you scared. I don't blame you but if you are a firm believer in the power of prayer then use it to strengthen your self honey cuz you will need it to get through this. That is what gave my my strength and believe me it wasn't easy at times to have faith that it would all work out fine but for the most part I did truly believe that God would get me through this and he did, More than you can believe. I've read many stories Jessi and none have touched me like yours maybe cuz I have the same close relationship with my daughter and my heart broke for you when I read your story. Jessi what your doing now for your mother is the best thing that you can be doing. You're take a proactive approach. Good for you! By the way I have heard good things about Cleavland Clinic. But do your research! Don't feel so rushed so much that you may not be able to make the best decission. Don't believe and trust doctors just because they are doctors I have heard to many horror stories of us patience putting too much faith in our doctors because of course we are vulnerable and of course they know more than we do. What I finally realized is that This is My Life and if they are not going to do what I Believe is best for me then I will find someone who will. Thank God your Mother has you. I hope You have someone there for you?? Take care! May God Bless your efforts.
Anna

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

JChurchwell, this is very important. What stage is her RCC. ? It makes a big difference in treatment, especially with RCC, what the stage is (1, 2 , 3, or 4) . For one I would not go to CTCA as I have heard many disturbing stories of people who looked into them, many here on CSN boards. Emory or Cleveland Clinic would be a much better choice. Secondly, 2 weeks will not make a difference as the RCC is often a very slow growing cancer.

Treatment choices by stage

Stage I or stage II: Patients with stage I and II RCC most often have their cancers surgically removed by either radical or partial nephrectomy. Additional (adjuvant) chemotherapy, radiation therapy, or immunotherapy after surgery for stage I or stage II RCC is not recommended. Patients who are unable to tolerate kidney surgery because of other serious medical problems are often treated by experimental procedures such as cryoablation or arterial embolization. With surgical treatment, the 5-year survival for stage I patients is between 88% and 100% and the 5-year survival for stage II patients is between 63% and 67%.

Stage III: Radical nephrectomy is the most common treatment for stage III RCC. Sometimes, a patient will have an arterial embolization procedure in attempt to reduce the amount of bleeding during nephrectomy. If the cancer extends into nearby veins, the surgeon may need to cut open these veins and to completely remove the cancer. The 5-year survival for stage III patients varies widely and is between 40% and 80%, depending on the local extent of the cancer.

Stage IV: Stage IV RCC has spread too far away from the kidney to be cured by surgery. If the patient's general health is good enough to withstand the side effects of cytokine immunotherapy, this option offers the best opportunity and is now considered standard therapy by many doctors. Clinical trials of new forms of immunotherapy, combined immunotherapy and chemotherapy, new chemotherapy drugs, and other new therapies are other options.

For some patients, palliative treatments such as embolization or radiation therapy may be the best treatment. When one or a few metastases are present and the surgeon considers it possible to remove them without serious side effects, an aggressive surgical approach to removing the kidney tumor and these metastases may be beneficial. Unfortunately, most patients who appear to have only 1 or 2 metastases on imaging tests actually may have cancer that cannot be surgically resected. The 5-year survival for stage IV patients is less than 18

Summary of renal cell cancer AJCC (TNM) stages
Stage I: The tumor is 7 cm (about 2 3/4 inches) or smaller, and limited to the kidney. There is no spread to lymph nodes or distant organs.

Stage II: The tumor is larger than 7.0 cm but still limited to the kidney. There is no spread to lymph nodes or distant organs.

Stage III: There are several combinations of T and N categories that are included in this stage. These include tumors of any size, with or without spread to fatty tissue around the kidney, with or without spread into the large veins leading from the kidney to the heart, with spread to one nearby lymph node, but without spread to distant lymph node or other organs. Stage III also includes tumors with spread to fatty tissue around the kidney and/or spread into the large veins leading from the kidney to the heart, that have not spread to any lymph nodes or other organs.

Stage IV: There are several combinations of T, N, and M categories that included in this stage. This stage includes any cancers that have spread directly through the fatty tissue and the fascia ligament-like tissue that surrounds the kidney. Stage IV also includes any cancer that has spread to more than one lymph node near the kidney, to any lymph node not near the kidney, or to any other organs such as the lungs, bone, or brain.

Treatment of Renal Cell Carcinoma
Roughly half of all cases of renal cell carcinoma are successfully treated in early stages of the cancer. Once the disease has progressed to stage IV, however, prognosis is usually very challenging. The primary treatment for RCC involves some combination of surgery, targeted therapy and immunotherapy:

Immunotherapy: Immunotherapy is a new form of treatment that uses drugs called cytokines to stimulate the immune system, allowing it to more effectively attack cancerous cells. The use of cytokines has been shown to reduce tumor size in 10 percent to 20 percent of patients.

Surgery: Surgical treatment is the only treatment that is aimed at curing the disease in early stages, though it can also reduce pain in patients with more advanced RCC. The most common form of RCC surgery is radical nephrectomy, which removes the entire affected kidney, the attached adrenal gland and the tissues around the kidney. A partial nephrectomy removes only the part of the kidney that contains the cancer and is usually performed in patients with cancer in both kidneys or when the patient has only one kidney.

Targeted Therapy: Targeted therapy, another new approach, uses drugs to attack specific targets in the cancer cells. These drugs work to block molecules that stimulate the growth of tumors and prevent the development of new blood vessels that feed tumors.
Radiation therapy, chemotherapy and hormonal therapy are sometimes used to treat RCC but are less effective treatments

Below is a post by another member who had stage 4 RCC
I am new to this website and to this discussion board. In November 2004, I underwent a radical left nephrectomy for Stage 2 RCC. I received no further treatment at that time because I was told by the urologist who removed the kidney that kidney cancer was non-responsive to both chemotherapy and radiation therapy.

I continued to have regular CT Scans of the chest, pelvis and abdomen. However, I did ditch the urologist and started seeing an oncologist. Last Fall, almost 5 years out, I was diagnosed with Stage 4 RCC as the cancer was found in my lungs and a lymph node. I have since been treated with Avastin and Interferon Alpha; followed by Sutent (didn't tolerate this one well at all); and am currently on Nexavar. I had 20-37% shrinkage in the lung "nodules" on the Interferon and Avastin treatment. Also, the cancer is no longer visible in the lymph node.

I am responding well to the Nexavar, but my oncologist has recently revisited the option of Interleukin-2 treatments. He feels this may be a good option for me since there no longer appears to be lymph node involvement and since the nodules in my lungs are small. At this time, no other involvement has been diagnosed.

Has anyone undergone the high-dose Interleukin-2 treatment? If so, could you please share your experiences with this treatment with me? So far, I have not missed a single day of work due to my cancer treatments. I continue to keep a positive attitude, and my oncologist claims that I have "breezed through" the three treatments I've been on thus far.

Thanks for any insight you may offer.
Fighting

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

I agree with Heartofsole, but I did not want to get into anything past stage 1 without any indication of the size of your mother's tumor. Additionally I thought that this information best comes from your doctor. Hopefully you and all others who are part of this club or are caregivers for club members for which we did not volunteer all have small tumors which are completely cured by Surgery.

Icemantoo

jchurchwell7
Posts: 7
Joined: Nov 2010

Well here is the latest update. Yesterday my mom underwent a complete nephrectomy of her left kidney at CTCA in Chicago. The doctor took the adrenal gland as well as the fatty tissue around the kidney. He said that the nodes didn't look too swollen but he took whatever he saw to be infected with cancer.

My mom still has several small spots on her lungs as well as a small tumor on the ouitside of her right kidney. We won't know for sure if the are mets until we get the pathology on the left kidney and a biopsy of the lung nodules.

The doctor plans to biopsy the lungs next month as well as start her on chemo. He will probably also cut the tumor off her right kidey as well. They think that it may be a primary case of RCC.
We are hoping that the lung spots are not mets but we have to realize that they very likely are.

We obviously can't be sure without the path report or the lung biopsy but it is likely stage 4 (hopefully not tho).

Thank you all for the information. Happy Thanksgiving!!

amurillo63
Posts: 29
Joined: Sep 2010

Thanks for the update. Happy to hear that she had the surgery. Try to stay positive. I know it's alot to take in all at once. When I found out that I had cancer I thought I don't have any control over the cancer but I do have control over how I choose to deal with it... So every time fear crept into my mind I prayed and gave it to my creator to deal with. This really helped me... Not meaning to sound preachy here but most people have some form of faith and it really helps to rely on that faith in times like these...

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