CSN Login
Members Online: 11

You are here

New Kidney cancer diagnosis.....What now?

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Hi:

To everyone here,much continued health and happiness to you and your families.
Yesterday the Kidney Doctor told me that I have a 4cm tumor on my right kidney. His exact words were its a tumor, its malignant and its cancer..... Wow..
After that I just went numb. He said he only removes the entire kidney so I have been
referred to someone else in his office that does partial removal but not until next week.
Today I had a chest xray and a bone scan and I am completely petrified.
I have told my family but I still haven't wrapped myself around exactly what all this may mean to me or to them. Talking too much about it with them makes it worse as I am not anywhere near being able to get past my own thoughts and feelings about it.
And actually I don't really know what my feelings are yet if you can understand that.
Seeing it out in the open like this helps a bit gives me some hope that maybe it won't be as bad as I imagine it is or will be. Does this get easier to figure out ?

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

Welcome back! Glad to hear you both are doing well. Each day will get a little better. Rest, take your pain meds and don't rush!
Rae

Another1bites back
Posts: 14
Joined: Oct 2011

My boyfriend was just told he has stage 2 or 3 kidney cancer and the tumor is 7 cm
the doctor is not much help all he says is " he needs to be patient" I think I way more worried than be is
everything I read says he has 3 years give or take ! Can that be true
KC

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

KC,
Sorry to hear about your boyfriend. But don't panic over the size of the tumor. There are larger ones and folks survive those. There are considerations that the doctors won't know until the kidney is removed and the pathology report has been issued -- things like the type of renal cancer (e.g., clear cell, papillary), the Fuhrman grade, positive or negative findings in the local lymph node. (I'm assuming that the normal treatment for kidney cancer -- a partial or radical nephrectomy -- has been discussed). If the cancer has not spread elsewhere, the surgery will get it all. And we can function quite well on one kidney. So while it is understandable that you are worried about him, there is also reason for a positive outlook. Stay positive for both your sakes, but especially for his. He is facing a battle, no doubt. But you are his support. We are yours. Have him join us here and he'll be encouraged because of the good advice and positive attitudes of the survivors here. God bless and best wishes,
Mike

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I spent today being completely miserable. I hurt all over, haven't gone to the bathroom in a week and just cried for a couple of hours for no reason whatsoever.
Haven't felt much like eating or talking and if my kid asks me one more time today if I am ok I will lock her in a closet...........Not one of my bestest moments.
Is this normal? The pain meds aren't much help as I think internal gas is the culprit. I spent the day walking around my house trying to work it out and it really didn't help much.
Finally got up the courage to take off the bandages , the one where the drain came out was pretty yucky so I put another bandage on it cause it creeps me out.... I am thinkin I might have a bit of post tramatic stress or something... Its like all at once this overwhelming need to cry just overtakes me and I don't really know why , plus little stuff is really pissing me off today ............................ Does this sound crazy to anyone else? Cause it makes me feel really looney....

Kat

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

Kat,

You just had surgery earlier this week. You are just getting off the pain medication. The pain medication makes you constipated. It is not fun to be constipated 1 week after abdominal surgery. I do remember that the second week post surgery is a lot better than the first and so on and so on. The days and weeks ahead will be better.

Best wishes,

Icemantoo

ams123
Posts: 71
Joined: Aug 2011

Kat - Did you get colace in the hospital, or did they recommend that you take it when you get home? It is a stool softener I was given in the hospital and at home, and it more than did the trick, if you know what I mean. I thought I might need some immodium, but it all worked out.

The gas pains are terrible, aren't they? Are you taking percoset? I got a prescription for 50 of them, but only took 1 when I got home because I think it made me nauseous. I'm thinking of taking one before bed tonight because I can't get comfortable at night and I can't sleep. (I am one week post-op, and my incisions aren't too painful, but I am having kidney pain which developed a couple of days ago.)

The dressing over my drainage incision was yucky too, and I put a bandaid on it after I took off the dressing. I kept a bandaid on it for 2 days, then it healed up. I took off the steri-strips today because they were starting to peel off and I was getting a rash from them, and now anytime my shirt touches my abdomen it feels very irritating.

About the emotional stuff - I was doing fine until yesterday. I became an emotional mess yesterday, even though I went to the doctor for my follow up and everything is fine. I am crying a lot, and I have nothing to cry about! My tumor was caught very early, it is stage 1 grade 2, I had clean margins and 90% of my kidney is left and it is functioning. What's to cry about? But I did some googling and it seems that depression/emotional dysfunction can be an after affect of surgery of any kind. Post traumatic stress is a definite possibility.

A neighbor came by to see me today and brought me two magazines and I started crying. Ack.

Luckily I see my therapist on Tuesday and I can ask him about all of this.

You don't sound crazy to me. Post-op, hurting, uncomfortable, grossed out by bruises and incisions and drainage holes, recovery from learning that you have cancer, etc etc. I would think you were crazy if all of this didn't affect you!

And you're not alone, I think I'm about to cry.

Linda

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

You and Mr Iceman made me smile. 1st time today..... Thanks guys...
No my doc din't give me anything for constipation..... And I am taking Hydrocodon or something like that ..... it upsets my stomach but I take it anyway..... And that makes me cry rofl....... Plus I fully understand why they need to give us gas but heck have they ever tried this junk? I feel like my earlobes are full of it...... My skin is really sore where the bandages were and my drain had no steri strips it was open.....

Yikes

Kat

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

You wouldn't think those would be two of the bigger issues you'd have to contend with but it seems hands down they are for most everyone. And most docs don't warn you! Gas and constipation were the worst! Even stool softeners didn't help me-but it all gets better. You are not alone in the way you feel-both physical and emotional trauma plus you feel so bloated and sore-what's not to cry about.
Rae

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

That was so sweet it made me cry !!!! LOL sniff....

My best
Kat

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Kat -

The emotions are totally understandable. I had my biggest meltdown about one week after surgery because I couldn't get the surgical tape goo off my arms. Complete and total meltdown - even worse than when I found out I had cancer. I'm two and a half months out and can still get emotional over the silliest things. Just let it out.

I agree with the others - both the surgery and the painkillers can cause major constipation. Take a stool softener and move around as much as you can.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I am still waiting somewhat patiently ...for the potty fairy to come and visit me but alas he has once again left me off the visit list...... I ate some salad today so hopefully soon lol...... Yep I cried because of the surgical goo today too .... and the very large black letters written all over my belly won't come off either so I cried some more... rofl....... I dunno why that bothers me for gosh sakes its gotta be the drugs....
I had morphine in the hospital and that stuff is wicked nasty but far better than feeling the pain. What a thing to be discussing with my dear friends, potty issues ... :)
Anyway thanks for the advice and I am so so glad your doing well now too.

Thanks again
Kat

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Kat,

The motorcycle accident that led to the discovery of my RCC also put me in the ICU for 6 days with morphine and percocet for pain. Like you I was bound up tight with no end in sight. My older sister who is into natural remedies for most of what ails us brought me a bottle of Oxy Powder and said give it a try. I was amazed at how well it worked and with none of the cramping or pain sometimes associated with stool softeners and laxatives. A month later following 10 more days in the hospital and 2 surgeries the Oxy Powder came to my rescue again. I have been using it ever since and highly recommend it, it is all natural and it works. Just Google Oxy Powder, you can usually get a 120 count bottle for around 40 bucks (not cheap). Four pills will get you going and two a day will keep you regular.

I hope this helps,

Gary

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Went to the doctor today for my post surgery consult and he handed me this:

Tumor Size: 6cm in greatest dimensions
Histologic pattern: Renal cell carcinoma
Histologic Grade: Moderately differentiated (Fuhrmans nuclear Grade II-III)
Renal Vein invasion: Not sampled
Perinephric Soft Tissue invasion: Not sampled
Invasion beyond Gerota's Fascia: Not sampled
Adrenal Gland present: No N/a

Margins: Specimen shows a thin rim of uninvolved capsular tissue focally, but if friable and fragments on handling precluding a definitive assessment of the margins, clinical correlation is required to determine the completeness of excission.
No lymph nodes received with specimen

TNM Staging: T1b, Nx, Mx which is Stage 1 grouping........

So it was bigger than I was told , still stage one but is it normal for them not to take out any lymph nodes to check ?
I dunno, it all makes me cry today anyways. I was advised that I don't need to see an oncologist at this point, just chest xrays and ct scans every 6 mths for the next 3 years so I guess I am very very happy about that...... Some of it just confuses me, especially the furhman grade .

Thanks guys
Kat

ams123
Posts: 71
Joined: Aug 2011

Hi Kat - Fuhrman grade refers to how the cells are in comparison to normal kidney cells. This is from wikipedia:

Grade I
Very little different from normal kidney cells. These cancers usually are slow to grow and spread and tend to have a good prognosis.
Grade II
Clear-cell renal carcinoma with nuclei that vary in size and are generally larger than in grade I tumors; nucleoli are slightly visible.
Grade III
Clear-cell renal carcinoma with cells that exhibit large nuclei with marked variability in size and shape; nucleoli are large.
Grade IV
Looks quite different from normal kidney cells and has a worse prognosis

Mine was Grade II, I don't think a mass would even show on a scan if it is Grade I.

My staging is PT1, PNX which is good - so is your staging. The PNX apparently means "Regional lymph nodes cannot be assessed histologically". Whatever that means.

I did not have any lymph nodes removed, but my pathology report says the margins are negative for carcinoma, which I think means no cancer cells have spread anywhere. Did your doctor explain to you the part about your margins, because I don't know what that means.

I was told by my urologist that I don't need an oncologist, but my primary care doc says I should have one. I am planning on finding one, because in case I ever have a recurrence I don't want to be scrambling to find a kidney cancer oncologist. If you do see an oncologist make sure he specializes in kidney cancer, because it is very different from other cancers. Luckily I live near Johns Hopkins and they have a big urology center and very specialized doctors.

I believe that the standard protocol for follow up is scans every 6 months, but my urologist says I should have the first one in 3 months. If you don't feel comfortable waiting 6 months perhaps you can talk to your doctor about doing it sooner, although waiting 6 months is perfectly normal.

You know what? I became very emotional last Friday, and it was after I saw my doctor for the results. And even though they were good results, I was still very emotional and it lasted a while, even now I am still somewhat emotional. Maybe the relief of it being over? Or the uncertainty because of unanswered questions?

Linda

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Thank you so much Linda for the information. I think I have walked through this past month or so in kinda of a fog. Hurting physically now it gives you time to reflect on what just happened I guess. I was emotional all week and when I met with my doctor I too felt overwhelmed after I got the results.
Its easy to allow yourself to go down the dark road and I believe part of what we can learn from this is to learn to keep ourselves in the now. See today and be in today and not worry about what might happen down the line. It takes some practice and its not always easy I've been doing it. Especially at night, I find myself thinking about what if ? But...
as I have said before, its not anything I can control by worrying myself and my family sick and it takes so much time away from what is within my control.

My Best
Kat

abbeyw
Posts: 2
Joined: Sep 2011

I just had a partial open removal of cancer from my left kidney. While I would have prefered to have not gone thru this they have pretty good results and there is a good clear area around the removal. If you have a good doctor they will leave you with good results. Life other wise is a gamble any way. This was my second cancer the first was colon cancer in 03. Surgery is what it is, follow you healthe care providers instruction and you will get thru it.

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I'm sorry to hear of your surgery. Hope your doing better everyday. Thanks so much for your kind words.... I am trying very hard to keep my head together and not worry about the what if's, its a day to day thing for me right now. Good moments and bad but just like everything else we just get through it.

My prayers to you

Thanks
Kat

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

I'm sorry to hear of your surgery. Hope your doing better everyday. Thanks so much for your kind words.... I am trying very hard to keep my head together and not worry about the what if's, its a day to day thing for me right now. Good moments and bad but just like everything else we just get through it.

My prayers to you

Thanks
Kat

puppetman
Posts: 53
Joined: Apr 2011

My Doc told Me the same thing as You, I had a 4cm tumer (cancer) on My right kidney, on May 4th 2011 I had 100% of My right kidney removed, I was in the hospital for 4 days, do what Your Doc tells You and You will be ok, I just had My first ct scan, and all is good, so do what Your Doc says and take things slow (cant do things fast anymore) and You will be fine, the only thing is no matter what I do, I get so tired around noon, if I dont take a nap, I fall asleep, but I will take being tired over having cancer any day, but most of all, put Your Fath and trust in God.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hey Kat,

Its been cold and wet here the last couple days, started me thinking about warmer climates like Florida and then naturally you. Haven't heard from you in awhile, hope everything is going fine. You are close to the 6 week post-op mark, for me that was about when I first felt near 100% physically but mentally it was still day to day. Its been almost two years for me now and it has gotten a lot easier to keep those inner demons at bay.

Hugs and prayers,

Gary

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear Gary:

I am actually doing quite well thank you!!! Not yet back to work but have been keeping busy as my youngest daughter is planning her wedding next fall.....
It was a rough few weeks and I found that I needed to get myself some antidepressants to get back on the right track but overall I feel better than I have in a long time.
Still come here pretty regularly to read up on everyones progress and make sure all are included in my prayers. I am learning not to dwell on what I cannot control and am very thankful that the surgery is behind me.... Hope all is still well with you and your family

Many hugs and much love
Kat

sabina57's picture
sabina57
Posts: 32
Joined: Oct 2011

Kat,

I relate to your feelings of numbness, fear and other emotions that you are going through right now. I was diagnosed with uterine cancer on 10/11th. I'm still in shock. My husband was diagnosed with kidney cancer this past February. He had his kidney removed and has one healthy kidney left. Back then, he couldn't see any light at the end of the tunnel. Now, 8 months later, he is working 2 part time jobs and though still has some uncomfortableness at times, overall he is doing wonderful. Me on the other hand, I'm very much in the eye of this storm. Take one day at a time; one moment. I know its easier said then done. I believe together all of us will get through this. Know that you are not alone. Try not to let the fear of "what if" consume you. Just take it slow and allow the emotions to flow. I wish you well and will say a prayer for you. Just hang in there. The people here seem wonderful and this is only my second day here.

Best,
Sabina57

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear Sabina:

Thank you so much for your kind words and I am glad your spouse is doing so well after his fight. I myself had a hysterectomy many years ago so I know what is ahead for you in that area if that is what your doctor plans for you.... If you need to talk please feel free to put me on your friend list :) Actually, I think the hysterectomy surgery was much worse than the kidney surgery for me. I didn't really feel normal for almost a year after that but you will heal. I will pray that all turns out well for you and your family.
You will find much support and people to listen here... this place has been my life line and I love everyone.... so don't be afraid to vent or ask questions.... On pce again ..
thanks and you hang in there too....

Hugs and many prayers
Kat

Pages

Subscribe to Comments for "New Kidney cancer diagnosis.....What now?"