Waiting for surgery and terrified

Liora4queen

Hi,
This is my first time posting here. I'm a stay at home mom, in my thirties with 2 little kids and always thought I was pretty healthy. I'm slim, don't drink or smoke and eat really healthy. I'd had an abnormal result of a routing urine test - showing some protien in the urine and was concerned, so I followed up with my doc. She said that she was sure it was just a blip, but I pushed to repeat it and it was the same. She referred me to a nephrologist and one ultrasound, followed by one CT scan later, I recieved the call that most of you have received ..."I'm sorry, but it's a mass - almost definitely cancer". I have to admit, I wasnt terribly suprised. I've been tired and listless and have had a feeling that something was not right in my body. I've also been having this wierd burning indigestion for the past few months.
I've been "interviewing" surgeons in NYC and think I've found someone, but am not sure how soon to schedule. They think that the 'thing' is about 1.5 - 2cm and didnt see evidence of metastasis on the CT. I was going to go in for surgery on 12/7, but that is 3 weeks away. The other option is the day before Thanksgiving. No prizes for guessing why that day is available.
I feel totally violated and invaded by this tumor and want it out.
The doctors I've spoken to seem to think that there is no need to rush. I feel a sense of urgency though. Am I making myself crazy? Does anyone have any advice for me? Should I push for earlier surgery or take my time and be better prepared.
I would really appreciate any input because I'm scared out of my mind and moving from a place of fear is sometimes a bad idea.

lbinmsp

Hello
and welcome. I'm so sorry you've had to join this little club but very glad you found us.

Being scared comes with the territory, unfortunately. You describe the tumor as 1.5 - 2.0 cm. Thata's small and that's a good thing! RCC generally grows slowly and the earlier it's found, the better your long-term outlook generally is. This definitely sounds like it's been found early.

Don't know what kind of surgery you'll have (laparoscopic / open / etc.) each has it's own recovery rates and challenges. You're a mom with children and the holidays are coming. I cannot even imagine how difficult your decision of 'when' will be. On one hand you want to make sure your children have great holidays (and you'll need to be healthy to manage that) - on the other, you want this thing out!

Having it done sooner is more for your own peace of mind (get it out and get it over with) - as far as the cancer itself, I'd suggest asking your doctor whether he/she felt there might be any significant growth over a few weeks (or even a month) period of time. Then make the best decision you can.


Good look to you - and will be whispering a prayer for you and your family! Keep posting and let us know how things are going.

garym

lbinmsp said:

Hello
and welcome. I'm so sorry you've had to join this little club but very glad you found us.

Being scared comes with the territory, unfortunately. You describe the tumor as 1.5 - 2.0 cm. Thata's small and that's a good thing! RCC generally grows slowly and the earlier it's found, the better your long-term outlook generally is. This definitely sounds like it's been found early.

Don't know what kind of surgery you'll have (laparoscopic / open / etc.) each has it's own recovery rates and challenges. You're a mom with children and the holidays are coming. I cannot even imagine how difficult your decision of 'when' will be. On one hand you want to make sure your children have great holidays (and you'll need to be healthy to manage that) - on the other, you want this thing out!

Having it done sooner is more for your own peace of mind (get it out and get it over with) - as far as the cancer itself, I'd suggest asking your doctor whether he/she felt there might be any significant growth over a few weeks (or even a month) period of time. Then make the best decision you can.


Good look to you - and will be whispering a prayer for you and your family! Keep posting and let us know how things are going.

You have time...
Liora4queen,

Everything you are feeling is normal and comes with hearing "you have cancer", but you can consider yourself one of the more fortunate ones. Early detection is the key, your tumor is small and rcc is slow growing in the beginning, mine was 5.1cm and my Dr. said it had been with me for at least 2 years and if not detected accidentally it would have gone unnoticed for 2-3 more years and tripled in size, that was 2 years ago. There is a HIGH probability that you will be cured by surgery. The mental side of waiting is the hardest part of this ordeal but if you are up for it my advice would be to slow things done a bit, sometimes I wish I had. Knowledge is power, research your surgery options, I think a partial nephrectomy would be a high probability for one so young with a small tumor. Take time to prepare things at home and put together a recovery plan, small children can be a blessing and a curse during recovery. If you do decide to have surgery sooner rather than later you may very well be feeling pretty good by X-mas, it takes a couple weeks post op to start feeling "normal", so get your shopping done first. At any rate, you have come to the right place, this is a very supportive group and we all help each other. Welcome aboard and keep us posted, many hugs and prayers are headed your way.

Good luck and God speed,

Gary

Bill Baker

Liora-
I am with you. I was
Liora-

I am with you. I was diagnosed with Transitional Cell Carcinoma in the right Ureter and right Kidney. Because of genetic condition (Muir Torre Syndrome) there is a risk that my other kidney. So my surgeon is altering the standard removal of the kidney. Instead, I will have open abdominal surgery with various options to be explored depending upon what they see. Surgery is scheduled for Nov. 28th.

I agree, the whole thing seems overwhelming. What I get strength from is the obvious: family, friends etc. I also try to focus on knowing what I have control over and what I do not. I have been reading books on nutrition to prepare my body the best I can. Exercise to the extent possible and reading: Anticancer: A New Way of Life by David Servan-Schreiber, MD, PhD., The Cancer-Fighting Kitchen by Rebecca Katz with Mat Edelson, The Places That Scare You: A Guide to Fearlessness in Difficult Times by Pema Chodron and forums such as this.

In regards to date, I agree, I want it out ASAP. That said, I will use the time I have up until that to eat/sleep well and try to find peace and mindfulness (not my strong suit).

Peace: Bill

icemantoo

Bill Baker said:

Liora-
I am with you. I was
Liora-

I am with you. I was diagnosed with Transitional Cell Carcinoma in the right Ureter and right Kidney. Because of genetic condition (Muir Torre Syndrome) there is a risk that my other kidney. So my surgeon is altering the standard removal of the kidney. Instead, I will have open abdominal surgery with various options to be explored depending upon what they see. Surgery is scheduled for Nov. 28th.

I agree, the whole thing seems overwhelming. What I get strength from is the obvious: family, friends etc. I also try to focus on knowing what I have control over and what I do not. I have been reading books on nutrition to prepare my body the best I can. Exercise to the extent possible and reading: Anticancer: A New Way of Life by David Servan-Schreiber, MD, PhD., The Cancer-Fighting Kitchen by Rebecca Katz with Mat Edelson, The Places That Scare You: A Guide to Fearlessness in Difficult Times by Pema Chodron and forums such as this.

In regards to date, I agree, I want it out ASAP. That said, I will use the time I have up until that to eat/sleep well and try to find peace and mindfulness (not my strong suit).

Peace: Bill

You are going to be fine
Liora,

You are very lucky in that you are going into this with less bagage (size of tumor,etc.) than probably 90% of the members of our little club. Not fun being told you have Cancer and than right out of the gate finding out that you have to have surgery. The surgery is not fun, but the cure rate for your size tumor without further intervention is over 90%. You will be monitored though. Mine was 9 years ago and 11 months later for my 60th birthday I went waterskiing. There is a young mother on this board who went on a roller coaster 3 months after this surgery. Do not do that. Wait 9 months or a year for that. You are going to feel a lot better after the surgery and recovery. You should be back to normal activities in 6 weeks or so.

Best wishes,

Icemantoo

braswelm

waiting too
I've been waiting since October, and my tumor is 7.5-8.0cm. My surgery is the day before Thanksgiving. So I think there must not be a sense of urgency. Everything I have read says it is a slow growing cancer. My first thoughts were to try and push the surgery up, but God has a reason for his timing.
Everyone here has been through a very similar story....you will find comfort and knowledge here. I hope you can find peace.
I determined very quickly to approach this with a positive attitude, and try to use this experience to let others know what to expect.
What you are feeling is normal, you are not alone.
Will keep you in our prayers...
Mike

msacher63

urgency
I think everyone here can relate to your feelings of urgency. The waiting is a killer but knowledge is power. Take the time to look into every option before acting. I just had my left kidney removed last Wed. 9th. My Dr. spent three weeks running tests to verify exactly how my tumor was located and what the best coarse of action would be. In the end, unfortunately, the whole thing had to go along with the adrenal gland and several lymph nodes surroung it, but I have no second thoughts about making the right decision. As the others posted, this is typicaly a very slow growing cancer and yours is small. You have time.

Minnesota Girl

Welcome to the club nobody wants to join
I was in your shoes less than 6 months ago. I agree with the others - while the desire to "get it over with" is strong, the harm in waiting is negligible. Use the time to research all your options. With your small tumor, you could be a candidate for a partial nephrectomy or maybe even cryo therapy. Once the kidney is gone, it's gone, so there's no going back to consider other options.

You can also use the time to get yourself ready - put some meals in the freezer, get your holiday shopping done, etc. Even with your youth and health, your butt will be dragging for several weeks. You should, however, feel well enough to enjoy the holidays.

AND - at this rate you can have your surgery on Pearl Harbor Day! You and your surgeon can go in and kick some a**!

donna_lee

Minnesota Girl said:

Welcome to the club nobody wants to join
I was in your shoes less than 6 months ago. I agree with the others - while the desire to "get it over with" is strong, the harm in waiting is negligible. Use the time to research all your options. With your small tumor, you could be a candidate for a partial nephrectomy or maybe even cryo therapy. Once the kidney is gone, it's gone, so there's no going back to consider other options.

You can also use the time to get yourself ready - put some meals in the freezer, get your holiday shopping done, etc. Even with your youth and health, your butt will be dragging for several weeks. You should, however, feel well enough to enjoy the holidays.

AND - at this rate you can have your surgery on Pearl Harbor Day! You and your surgeon can go in and kick some a**!

Ditto on the headlines above
Welcome to another birthday to celebrate, as I have done. There are times when you may feel a little bit down, overwhelmed, angry, frustrated...and then you think of all the fun stuff you have to live for and get over it.
Good luck and keep on recovering.
Donna

Liora4queen

Thank you everyone
I am thanking God for all of your responses right now.
I've been trying to calm myself and use my energy to find the best help I possibly can. I've been to three surgeons in NYC and they all specialize in robotic/laparoscopic partial nephrectomies. They all think I'm a great candidate for that and that it looks good.
I'm now down to a choice between 2 surgeons: One at NYU and one at Memorial Sloan Kettering and it looks like I'll be able to have the surgery done around 12/7 with either. Does anyone have any experience with either of these hospitals?
My tumor looks small and contained, but they havent looked at my lungs yet, so I'm anxious about that, but hoping for the best.
My very best wishes to all of you,
Liora

icemantoo

Liora4queen said:

Thank you everyone
I am thanking God for all of your responses right now.
I've been trying to calm myself and use my energy to find the best help I possibly can. I've been to three surgeons in NYC and they all specialize in robotic/laparoscopic partial nephrectomies. They all think I'm a great candidate for that and that it looks good.
I'm now down to a choice between 2 surgeons: One at NYU and one at Memorial Sloan Kettering and it looks like I'll be able to have the surgery done around 12/7 with either. Does anyone have any experience with either of these hospitals?
My tumor looks small and contained, but they havent looked at my lungs yet, so I'm anxious about that, but hoping for the best.
My very best wishes to all of you,
Liora

It will soon be behind you
Liora,

Sounds like you are holding up as good as can be expected. The surgery will soon be behind you and you will soon be back to normal. In 2 months or so you should be able to help me with the newcomers. It sounds like you have several good choices as to where to have the surgery. There is no wrong choice and whichever you choose will be the right decision.
Since you started this journey way younger than I, I expect that you will have the physical strength to handle it much better.


Best wishes,


Icemantoo

robert_douglas_smith

Liora4queen said:

Thank you everyone
I am thanking God for all of your responses right now.
I've been trying to calm myself and use my energy to find the best help I possibly can. I've been to three surgeons in NYC and they all specialize in robotic/laparoscopic partial nephrectomies. They all think I'm a great candidate for that and that it looks good.
I'm now down to a choice between 2 surgeons: One at NYU and one at Memorial Sloan Kettering and it looks like I'll be able to have the surgery done around 12/7 with either. Does anyone have any experience with either of these hospitals?
My tumor looks small and contained, but they havent looked at my lungs yet, so I'm anxious about that, but hoping for the best.
My very best wishes to all of you,
Liora

You will be fine and on the recovery side very soon.
The first of September I had been having sinus problems and was scheduled for surgery the 5th of Sept. The week before, I did all the surgery pre-labs and chest xrays for the surgery. This surgery was done as an out-patient. (the recovery from that was terrible. Didn't know so much could come from your head.) When we were about to leave the hospital the ENT doctor mentioned that the chest xray showed some areas of concern and I should have a CT scan done of my chest. So while recovering from the sinus surgery, we had the CT scan done. A few days later my primary care doctors office called and the nurse told me that there were 3 small spots on my lungs, but were so small that they were of no concern. But this scan caught a part of my abdomen and there was a concern of one of my kidneys. So we scheduled another CT of the abdomen. A few day later my phone rang and rather than one of the doctors nurses on the phone it was my doctor. He ask me how I was doing, (I still remember my reply) I said that if I were talking to his nurse I would probably be doing a whole lot better. He then told me that the CT scan showed a 6.7cm mass in my left kidney and he would schedule me with a urologist. And he thought that I would have to have a laproscopic nephrectomy. On the 10th of October my wife and I had made a two page list of questions for the urologist, his recommendation was the same as my family doctor, a total nephrectomy of my left kidney. Surgery was scheduled for Oct. the 25th. During the time before the surgery even though I had support from family, friends and my friends here on CSN I was still scared and worried to death. I finally made an appointment with my family doctor. I guess we talked for over an hour. I didn't know before but he also is a cancer survivor of 10 years. I guess we talked medical for a half an hour but it was what he said to me afterwards that has help me the most. He said "Be where your suppose to be, do what your suppose to do, and let GOD take care of the healing." On Tuesday the 25th of Oct. I went into the hospital and had the surgery. My Urologist thinks all of mass was contained in the kidney. The lab report came back with 3 tumor in kidney, the largest was 7.4 cm. Got to come home on Friday the 28th. I was hoping for only a couple of days in the hospital after surgery, but it turned into 4 days. There has really not been any internal pain only from incisions. Couldn't keep anything on stomach until they got me off morphine. Took pain meds for the 1st week at home just in case. Since then discomfort only from incisions.The worst part is the waiting and waiting and the unknown. (Being a man, I'm usually a wuss when it comes to pain but this hasn't been terrible.) Just take it easy for a little while and you'll be fine.I am almost a month past my surgery, and plan on going back to my part time job next week. Afterwards only had soreness with the main incision. Had CT of brain this past week and it came back negative.I feel I could have gone back to work this week at the veterinary clinic, but was probably best to wait. Played with my grand-boys this week to get my strength back. Just don't rush things, eat small meals and follow doctors advice. Will have more CT's of lungs and abdomen next month. If all of that comes back negative I will have a sigh of relief. I am positive you'll do well and be on the recovery side of this soon. You'll be in my prayers.

Doug

Liora4queen

icemantoo said:

It will soon be behind you
Liora,

Sounds like you are holding up as good as can be expected. The surgery will soon be behind you and you will soon be back to normal. In 2 months or so you should be able to help me with the newcomers. It sounds like you have several good choices as to where to have the surgery. There is no wrong choice and whichever you choose will be the right decision.
Since you started this journey way younger than I, I expect that you will have the physical strength to handle it much better.


Best wishes,


Icemantoo

Icemantoo
Thank you for your reply. I've been reading a lot of your posts recently and you have inspired me to be brave! I'm still afraid as so much is unknown, but somehow, suprisingly, this experience is teaching me more about living that I knew before. Is that strange?
I dont just want to live, I want to LIVE!

Liora4queen

robert_douglas_smith said:

You will be fine and on the recovery side very soon.
The first of September I had been having sinus problems and was scheduled for surgery the 5th of Sept. The week before, I did all the surgery pre-labs and chest xrays for the surgery. This surgery was done as an out-patient. (the recovery from that was terrible. Didn't know so much could come from your head.) When we were about to leave the hospital the ENT doctor mentioned that the chest xray showed some areas of concern and I should have a CT scan done of my chest. So while recovering from the sinus surgery, we had the CT scan done. A few days later my primary care doctors office called and the nurse told me that there were 3 small spots on my lungs, but were so small that they were of no concern. But this scan caught a part of my abdomen and there was a concern of one of my kidneys. So we scheduled another CT of the abdomen. A few day later my phone rang and rather than one of the doctors nurses on the phone it was my doctor. He ask me how I was doing, (I still remember my reply) I said that if I were talking to his nurse I would probably be doing a whole lot better. He then told me that the CT scan showed a 6.7cm mass in my left kidney and he would schedule me with a urologist. And he thought that I would have to have a laproscopic nephrectomy. On the 10th of October my wife and I had made a two page list of questions for the urologist, his recommendation was the same as my family doctor, a total nephrectomy of my left kidney. Surgery was scheduled for Oct. the 25th. During the time before the surgery even though I had support from family, friends and my friends here on CSN I was still scared and worried to death. I finally made an appointment with my family doctor. I guess we talked for over an hour. I didn't know before but he also is a cancer survivor of 10 years. I guess we talked medical for a half an hour but it was what he said to me afterwards that has help me the most. He said "Be where your suppose to be, do what your suppose to do, and let GOD take care of the healing." On Tuesday the 25th of Oct. I went into the hospital and had the surgery. My Urologist thinks all of mass was contained in the kidney. The lab report came back with 3 tumor in kidney, the largest was 7.4 cm. Got to come home on Friday the 28th. I was hoping for only a couple of days in the hospital after surgery, but it turned into 4 days. There has really not been any internal pain only from incisions. Couldn't keep anything on stomach until they got me off morphine. Took pain meds for the 1st week at home just in case. Since then discomfort only from incisions.The worst part is the waiting and waiting and the unknown. (Being a man, I'm usually a wuss when it comes to pain but this hasn't been terrible.) Just take it easy for a little while and you'll be fine.I am almost a month past my surgery, and plan on going back to my part time job next week. Afterwards only had soreness with the main incision. Had CT of brain this past week and it came back negative.I feel I could have gone back to work this week at the veterinary clinic, but was probably best to wait. Played with my grand-boys this week to get my strength back. Just don't rush things, eat small meals and follow doctors advice. Will have more CT's of lungs and abdomen next month. If all of that comes back negative I will have a sigh of relief. I am positive you'll do well and be on the recovery side of this soon. You'll be in my prayers.

Doug

Doug
Thank you for your detailed, kind reply. I'm hoping you are going from strength to strength and that your CT's will show lovely, clear lungs & abdomen.
I am very afraid of what I dont know. I like to have a lot of information and my imagination is my worst enemy. I am looking forward to having this surgery behind me and getting on with life. It's going to be hard because my kids are so little and I have to be very hands on with them, but I have some help lined up and hopefully we'll all manage.
I've never had a 'real' surgery before and even though I've read a lot on these pages about people's experiences, am still not at all sure what to expect.
I've been starting and ending every day with prayer and it's helping me to find a calm place within myself.