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Not sure and scared to death

cfela
Posts: 1
Joined: Aug 2010

I went to hospital on 8/5 with what I thought was a kidney stone. Classic symptoms: flank pain, foul smelling urine etc.. Blood and urine showed small UTI and CT was done. Some calicifications on right kindey and was told a cyst on the left. Got a call 8/6 from my husband's urologist and was told it was a " large probale complex cyst but could not rule out mass." The nurse that called said that we needed to have it seen about and that the kidney may have to be removed. Needless to say i am in a state of shock. I am the sole provider for my family as my husband is disabled after being hit by a drunk driver. We have no insurance and we are scared to death. I joined this group because I am needing to vent and hopefully someone has some insight into this. My mother had thyroid cancer in 2004 and is doing well. Does anybody know the chances of this being cancer? I know noone knows for sure I just want to know if they usually do turn out to be cancer or are they cysts. The nurse did say it was large and I read that the larger ones usually are cancerous.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

A nurse has no business raising the question of surgery with you. Demand to speak with the doctor and if the doctor refers you to another doctor, than speak with that doctor. That being said if it does turn out to be kidney cancer the good news is that surgery cures most people with kidney cancer if the cancer has not metastisized. Good luck from someone who has been there and done that ie surgery on 8.1.02.

pbjoseph1
Posts: 10
Joined: Aug 2010

Hi cfela,

I went to the hospital 3 weeks ago for solmanilla. In the hospital a tumor was found on my left kidney. CT and ultra sound showed it to be a 3.7 cm solid mass. I'm getting a 2nd a 3rd opinion and deciding what surgery to have. I've been scared, I've been tough. It wasn't easy to hear someone say you have cancer, but I'm positive. If it wasn't for the fact that I was sick, Iit could have grown and been worse. Be thankful it was caught. I'm sorry to hear of the unfortunate cicurmstances prior to the finding. I hope and pray everything works out. Keep a positive mental attitude, it's the most important thing.

Reguards,

A soon to be cancer survivor

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

Kidney Cancer if caught before it spreads is curable thru surgery. Everyone is scared when they are first told they have Kidney Cancer. The change in pbjoseph1's attitude from his first post 10 days ago to this post is a major and posive change in attitude and like he says he will soon be a cancer survivor.

love4life
Posts: 33
Joined: May 2010

I know you are scared. If it turns out further treatment is required make sure to check about financial assistance. It will be based on household income and number of people in the household. Most hospitals are offering some type of assistance and it's offered because there is a need and a lot of the hopsitals need to do that type of stuff to maintain a community outreach requirement. Don't be afraid or embarrassed to ask. Where I live a lot of the doctors will honor the percentage off of financial assistance the hospital offers but you have to ask about it.

pbjoseph1
Posts: 10
Joined: Aug 2010

iceman, I had my partial nephrectomy, and I'm feeling great compared to 8 days ago. I'm looking forward to moving on and being the survivor I posed about several weeks ago!!!!

foxygirl
Posts: 3
Joined: Nov 2010

A year ago when I was being prepped for radiotherapy after surgery for breast-cancer a growth was picked up on an abdominal X-ray. I had a CT scan and my oncologist said we would do another CT scan in a year to see if it had grown. My recent CT scan reveals that it has grown to 7.67x6.4cm and I am having a radical nephrectomy on 25 November. That was three months ago and the delay has been caused by a very bad multiple-fracture of the tibia and fibula and the medication I was on for blood-thinning which it was felt I couldn't stop. Although my urologist is sure that it is contained within the capsule, I know that he won't know that until he opens up. I am so scared that it might have metastasized and gone into the renal vein and then elsewhere. I can think of little else. Another problem is that I can't yet put weight on my leg and am on crutches and he says that I will be quite unable to use crutches after surgery because of all the layers of muscle that he has to cut through. My house is not suited to accommodate a wheelchair and that is also worrying me.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

foxygirl,

One thing is certain from your diagnosis and that is that you need to get the surgery behind you. There is no way to sugar coat the surgery or the recovery, but the odds are that the surgery will cure your kidney cancer and in the unlucky event that there has been some metastisising the quicker you get the surgery behind you the better your chances for a full recovery even if further treatment is needed. It should be only a week or so when you can ambulate without surgery related pain. The fact that your home is not suited fora wheelchair should not ne used to postpone this necessary surgery any longer. Round up all the help you can get as you are going to need a little following surgery.

Best wishes icemantoo, surgery 8.1.02

foxygirl
Posts: 3
Joined: Nov 2010

When I went on to this site when I woke up this morning I felt so encouraged to read your posting icemantoo, and yours too, amurillo63. There is no question of my surgery being postponed; it is still to be 25 November. It's just that I have spent hours reading the CSN Discussion Board over the last few weeks and have not come across positive outcomes when the size of the lesion is as large as mine, but I will take one step at a time and not stress out so much about the 'what ifs'. I have spent so much time on all the comments that I feel I know icemantoo and many others personally. Thanks for your help.

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

Foxygirl this is just another test God has given you, crunches or not you have to have your radical nephrectomy done, you're already at home recovering from another test God has given you. If you cannot use crutches you will have to use a walker, yes you should be able now after three months to put a little weight on your leg now to stimulate bone growth, just sitting and worrying is not going to stimulate bone growth, ask your orthopedic doctor if would be okay to start non-weight bearing exercises like walking in a pool to help stimulate bone growth or ride a stationary bike, I have had nine left knee surgeries and I also had a high tibial ostomy. A high tibial ostomy surgery involves plates and four screws, from the tibia to the knee, I woke up with a bone infection which I fought for 106 days to keep my left leg with antibiotics and walking on crutches and using a walker at home, at that time my orthopedic doctor suggested to draw out the infection and to stimulate bone growth with riding a stationary bike each morning and allowing me to put a little weight on my left leg. I was not allowed to walk in a pool until my incision and bone infection healed.

Foxygirl from experience and gathering knowledge there is only a few ways to stimulate bone growth after major orthopedic surgery, one is by getting in your car and driving every day to a physical therapist to use a bone growth simulation machine, most insurances will not pay for a bone growth simulation machine to use at home, the only way I stimulated bone growth was by slowly each day putting a little weight on my left leg while using my cruthes. Yes Foxygirl I was able to use my crutches right after my partial nephrectomy, yes you going to be sore where they do the upcoming surgery, the quicker you get up and start moving one step at a time the quicker you will heal.

Foxygirl I understand you're scared, but worrying about something that hasn't happened about possible metastasized will only slow down your current healing from your leg surgery, you need to focus on positive energy/thoughts to heal for your upcoming surgery also, you're not a victim your a warrior. I understand your frustration about not able to get up and walk at the present time and worrying about your upcoming surgery, believe me it will get better, keep doing your research, suggest bringing a list of questions to your doctors it will help with worrying. Be very careful about getting advice on CSN discussion board, I am not a doctor I'm only given suggestions from my past knowledge and experience. Feel free to contact me with any questions.
GOD BLESS
Dave

amurillo63
Posts: 29
Joined: Sep 2010

Hi Foxygirl,
I know that it is easier said than done to not focus on the what ifs, rather on what you can do to feel like you have some control in this situation. I was diagnosed on May 5th. and did not have my surgery till Oct. 7th. I know what you are going through! The worry that this is like a ticking time bomb in your body. Knowing that it could be spreading was the worst. The doctor had told me that my tumor was the size of a football or basketball and that the chances of a tumor that huge spreading was very likely. I decided to go to a Nutrition Therapy doctor. I also changed my diet as I stated previously to a mostly all natural diet. I believe that the vitamins and minerals that I was taking help to keep it under control. What ever you choose to do it is important that you try to keep the negative thoughts out of your mind. The mind is a powerful tool so meditate on how you will beat this. You will not be fully confident in this mind game but after a while you will feel your self believing and being more confident in these positive thoughts.
I hope you will let me know how you are doing. I will be praying for you foxygirl.
Anna

amurillo63
Posts: 29
Joined: Sep 2010

Hi Foxygirl,
I had a similar setback in my surgery. I was anemic and also I do not accept blood transfusions so my urologist said that I would have to have a blood count of 16 before he could do the surgery. His plan was to give me Iron Infusions and Procrit to help build the red blood cells. He also wanted to have a arterial embolization to cut the blood supply from the tumor thus killing it. He also wanted to start me on a cancer treatment.
This all sounded great! Unfortunately, my oncologist was very negative about my decission to not accept blood. He pretty much left me to die with no care being done other than the Iron and procrit. I complained only until then did I get treated. They referred me out of network to a hospital that specializes in Bloodless Surgery. I had my surger on Oct. 7, 2010 and it couldn't have gone better. Through all of this I knew that the doctor wasn't doing anything for me so I took control of my own well being. I found that the benefits of natural healing. It really works! I have spokent to survivors that were told that they have 3 months to live and they were treated by unconventional treatment, which basically consists of a natural diet and vitamins. I hope that this will offer you some other options.

foxygirl
Posts: 3
Joined: Nov 2010

Hi Amurillo63, Apart from a natural diet and vitamins, I'm interested in anything you benefit from. I'm practically a vegetarian and eat a lot of raw salads with olive or avocado oil and balsamic vinegar. I sometimes have a very little bit of chicken fillet. I love cooked vegetables, and also milk and yoghurt. How are you getting on now just a month after your surgery? I'd love to hear from you again.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I would talk to the doctor and not listen to what the nurse tells you, she overstepped her place there for sure. You should let the doctor know that she is doing that too because she will do this with other patients and she really shouldn't be telling patients that kind of info.

I am not a kidney cancer patient but am experiencing so many symptoms, went in for CT and they said it was a kidney stone and turns out there was no stone but I have developed all kinds of other symptoms now - they are all running around scratching their heads at this point.

I am however a 22 year survivor of non hodgkins lymphoma so while the cancer is different the experiences we all have are often similar including being scared to death at the beginning, worrying about the diagnosis, finamcial issues, family responsibilities. I was considered cured many years ago. Cancer isn't what it used to be for many many patients so that is a positive as well - a big one.

Icemantoo and the rest on the board can fill you in on more of the specifics of kidney cancer as they have been there but I am here to tell you that cancer is very survivable and kidney cancer seems to be one of those in many situations so take heart in that.

Try and take things one step at a time and try to not let your mind get ahead of the situation although I know it's hard to do that, but try.

I will keep you and yours in my prayers. This board understands what you are going through in every way possible so you are in the right place. Post when you want, don't worry about what you ask or why, we have all been there and will help you.

Blessings,
Bluerose

amurillo63
Posts: 29
Joined: Sep 2010

Hi cfela,
I read your story and wanted to check in to see how you are doing. I was diagnosed w/RCC in May and had a radical nephrectomy on 10/7/10. Regarding the financial burden, I completely relate. I too am the sole provider for my family and I have to say for me this was what caused me the most of my worries. The cancer itself I was confident after reading a lot of research that I could survive this. I am using nutrition -whole foods to keep the cancer from returning. Which is my biggest fear... I hope to hear from you and to know how you are doing and to let you know that when ever you need a shoulder you can always call on me. I wish u all the best!
Anna

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