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First my right boob, then my right kidney....

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

Just when you think life couldn't get any more surreal in 2016, I was diagnosed in June with Invasive Ductal Carcinoma, Stage IIB, Grade 3 cancer cells and lymph node involvement to boot. During snowball of further testings (MRIs, ultrasounds and a full body PET scan woo hoo!), a 6.3 cm suspicious mass was located in my right kidney. I then had a CT scan for a closer look and met with a urologist who confirmed it was a solid mass that in his estimation had a 95% chance of being renal cell carcinoma. Even if it fell within the 5% chance of being something else, removal was necessary given the size. 

At this point, I had already begun my 20 week chemo regimen for the breast cancer and removal of the kidney would have to wait until that was done and my mastectomy was done & healed.  I had my mastectomy with tissue expander placements on 12/09 and am healing up nicely (though pain management has not been a breeze by any means). 

My laparascopic kidney removal is scheduled for 1/11 and I was supposed to have a CT scan just to check on things yesterday. I have a contrast dye allergy that the scheduler apparently missed so after showing up for CT scan yesterday, we learned we couldn't have it done and would need to reschedule so I could be pre-treated with prednisone to prevent allergic reaction. I've been on def con level 5 anxiety about this scan...worrying the mass has grown or, even worse, spread outside the kidney itself. I've been told time and again that these kidney things are slow to grow...but I still worry. EDITED TO ADD: CT Scan has been rescheduled for this coming Friday but I may not know results until appointment with urologist next Tuesday. 

Would appreciate some positive vibes...and maybe to connect with someone else who is dealing with 2 separate forms of cancer simultaneously. 

I am also supposed to start radiation on the right breast & axillary lymph nodes after healing from kidney surgery but am having major second thoughts given potential side effects of radiation...that and the fact I've felt as if I've been through hell and back in treatment already. Chemo was no picnic and these tissue expanders are painful- I won't be able to get them out and exchanged for presumably more comfortable implants until radiation is done & after 3 months of healing after that. 

For those of you who've had radical robotic laparoscopic kidney removal surgery, any tips/advice/words of wisdom???

icemantoo's picture
icemantoo
Posts: 3247
Joined: Jan 2010

As far as the radical laproscopic kidney removal, been there, done that back in 2002, Not a pleasent experience, but it beats te alternative.  It is major abdominalsurgery and the recovery without other issues took me at a then 59 years young 6 weeks to get back to a slow normal. The first week after being nephed was a bit tough. Where loose sweats for the first few weeks. I wish I could say it was painless, but I would get laughed off this forum.

 

 

Icemantoo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sufficient for the day are the evils thereof. That might be king James, or I might have mangled it, but you know what I mean (hopefully). Anyway someone certainly seems to have it in for you.

1/ Dont Panic. Impossible to do, but try anyway. 

2/ Radiation after you've recovered from having your kidney removed? Forget about it for now. It wont happen in January. I'd be surprised if it happens in February. It may be a little excitement to liven up a dull Lent or Easter. I confess Radiation sounds a bit odd. Neverthe less forget about it for now

3/ Tumour doesnt sound very big (mine was 10cm) and these guys are experts they know what they're doing.

4/Pain. Different for everyone I guess. I woke up to find a drip feed of morphine going into my vein. Which was nice. But you know, its major surgery. Your pain will lessen daily over the first week and continue to do so. Its not pleasant, but it IS manageable. If you have decent or funny hallucinations let us know

You're in safe hands. Trust the professionals and make sure there are no other allergies sneaking through the net.

Keep calm and good luck

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Well glad you found us, Pepper! But dang.. ENUFF!!

The size under 7cm is usually considered Stage I. AND there are folks here who have had a much bigger size tumor and are doing fine. Yes, RCC is usually slow growing unlike other cancers. My brother in law had his removed 20 years ago, and fully involved his kidney.. he's still here, healtheir than ever and needed no other treatments but surgery.

But I hear your concerns and fears.. so I am sending you a calming hug and HOPE in your heart!

Most surgeries now are done laproscopically via robatic, so make sure your surgeon is trained in that method. Even if whole kidney is removed (radical) they have a way to "bag it" inside and put it out from an incision about 3-4 inches. Most incisions are very small (about 1 inch) to get the robatic arms through.

Ask any questions you like, we're here for you and will walk this journey along side you! YOu can DM me in the email section of this site.

Hugs, Jan

WhatIsLife's picture
WhatIsLife
Posts: 38
Joined: Dec 2016

I'm very sorry to hear this is happening to you. You've come to the right place for support. I don't have a boob so I can't relate to you on that, but I can on the kidney - I had the other one removed a couple of months ago. You'll be glad it's being done laparoscopically - less and smaller incisions by the surgeon - but as others have mentioned, the pain afterwards is substantial, but that will pass.

There was a slight delay between diagnosis and kidney surgey and I too was worried that it would spread, but the doctor assured me that wouldn't happen - he told me it takes years for these things to grow in the first place, but I understand the anxiety. That's only natural, and sounds like you have enough to worry about.

But I hope you find the help you are looking for. I've only been on this board about a week as my cancer did spread, and I found a lot of help here, and a lot of good support. I'm sure there are people here dealing with two cancers at once who can probably give you some tips. Hang in there!

Kevin

mrou50
Posts: 389
Joined: Mar 2013

I had the full nephrecotomy so I can't address the laproscopic surgery but I can tell.  Kidney cancer can take and ususally takes a while to develop so you should be fine on your timeline.  As for radiation I have had enough to light up the city of Portland by this point and other than fatigue I really never had any issues with radiation, my sister in law did have some burning of muscle tissue which is possible but so far I have had nothing like that.  The buring is compared that of a bad sun burn and usually goes away. I wish you the best with you journey I can't imagine what you are going through having two different cancers, you are in my thoughts and prayers.

Mark

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

They need to get this started within 8 weeks of mastectomy so it will be a rush to start the rads on my upper area- if I decide to go through with it. I am torn based on potential side effects, risks vs. rewards. I'll be talking more at length with my MO about it once surgery is done but I'm strongly leaning against going through rads. She may convince me otherwise but the thought of going daily for rads treatments for weeks as I recover from kidney surgery AND deal with pain of expanding tissue expanders (these things HURT!) sound about as pleasant as diving into ice cold water and staying there until I'm hypothermic. The PET scan that revealed kidney mass was on 6/15. 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome Pepper! So sorry to hear about your health situation. You have a lot on your plate!

The laprascopic nephrectomy is uncomfortable, yes. But most people are surprised at how they feel afterwards. It often isn't as bad as they expected. I was doing laundry five days later (not recommended but I just wanted to illustrate the outcome). But yes, talk to your doctor a bit further regarding your qualms.

Wishing you all the best! Please keep us posted!

Hugs

Jojo

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

Hi, Pepper.  Welcome to this site.  I know you will find as much encouragement, care, and advice as I have here.  The people on this site are very special and will help in many ways.

Let me tell you I "kinda" get what you are going through.  Although I don't have breast cancer, I did have a second primary cancer found when they were going through the pre-op scans for kidney surgery.  It certainly knocks you for a loop.  From your profile picture you look like an active and healthy young lady, so these diagnosis just don't match with what healthy people should face...right??  This was the question I wrestled with after my initial diagnosis and the one that kicked my butt after the second primary was found.  I suppose I'm still in a level of denial that I had cancer--not one, but two.  Day by day I'm coming to terms with it, but it takes time. 

Take care and good luck with your radiation.  Keep us posted on your scans and pending surgery.

Blessings--Stub

Deanie0916
Posts: 262
Joined: Nov 2016

Hi Pepper, I am so sorry you are having a double dose of bad news. I also have dealt with breast cancer and kidney cancer, but my diagnoses were years apart, so I am not sure how much I can relate. I had a radical nephrectomy at the end of August and my tumor was large (20cm). It was RCC and both of my urologist and oncologist both assure me that that monster had been in me slowly growing for years. I wouldn't worry about the rate of growth. The radiation treatments were manageable for me, but I didn't have tissue expanders. I had a lumpectomy, my breast cancer was stage IIIa. The radiation was not as bad as the chemo, I had one spot that got burned a bit, but they have wonderful ointments that help. I would be open to discuss all of this with your doctors as suggested above. My prayers are with you, you can beat this! God bless you.

donna_lee's picture
donna_lee
Posts: 931
Joined: Feb 2009

the Kidney cancer, the site of the original RCC.  But the year prior to the Dx, I was having problems with (I thought) my gall bladder, so I offhandly made a comment to my new internist that spring of 2006.  He ordered an US, and away we went.  Large mass in R. kidney, one or maybe 2 in liver and spots in various places.  Speed thru more types of tests and consults, and in a major abdominal opening, 2 different surgical oncology specialists removed the R. kidney, set of nodes behind it with 2 of 11 positive, left lobe of liver, lots of wedges from right lobe that were negative, and a congenitally defective gall bladder and bile duct. Two subsequent recurrences, that were not detectable during the original surgery, were both removed with 4" abdominal surgeries. Added to the original scar, I have a line that runs from my bikini line up and to the right side between the first 2 attached lower ribs, a total of about 14 ".  After 10 1/2 years, they are all healed, mildly itchy when I sweat heavily or don't turn the water cooler after showering.  The worst is the separated rib muscles can go into spasm and give me a very stiff neck.

I haven't had a second cancer, as you are dealing with; but have had several scares because of regular follow up testing on the RCC, as they found enlarged nodes in my thyroid and "???" on mammograms.  Multiple tests and recalls ended with a "just come back next year."

I have no advice for you at this point, as you have good consult and Dr's working with you.  But I can tell you that you are now a survivor!  So make up your mind that you are going to live and survive for many more years to come and live your life accordingly.  Enjoy Life.

Hugs,

donna_lee

APny's picture
APny
Posts: 1976
Joined: Mar 2014

It really sucks to be diagnosed with kidney cancer after all you've been through. No advice or suggestions just a big hug and the best wishes for an uneventful, boring surgery and recovery. Mine was a partial but open and still I was home 2 days later and working at my computer the 4th day. Not a pleasant experience but way better than my fears made it out to be prior to it. All the best to you!

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

Thanks everyone! Still all tight with anxiety about scan but you've made me feel a bit less anxious. Will keep y'all posted.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Pepper

I'm very sorry for all you're going through, it is not easy to emotionally deal with cancer news. But let's find good news, breast cancer is one of most treatable cancers, I personally know many ones who are breast cancer survivors for so long. The treatment isn't walk in the park but the goal is reachable. Kidney cancer is also a good one specially once the tumor is not spread yet. A surgery is all it takes to get rid of it with more than 90℅ of being cured for the rest of your life. Even if it's not confined there were no better time than now to have kidney cancer as there are many drugs and treatment options which none of them were accessable seven or eight years ago.

RSS is normally slow growing so don't get upset for one week sooner or later. I had a 10 cm tumor and I'm NED since the surgery 29 months ago. I had open radical nephrectomy and as a 36 year old athletic girl I had a rough night then things got better daily. I had a one week trip on fourth week post my surgery and my friend whom I spent the week with couldn't believe I had surgery three weeks earlier. Every one is different but be sure it's managable. Take a deep breath and trust your medical team.

Wish you all the best

Forough

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

 from the strenght of your young age and remain positive.  I know it sounds easy and I know it's not. We here have all felt overwhelmed at some point each in his or her our own history with this desease. Brighter days will come. Wishing you all the best.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Maros I love your profile photo, beautiful face, colorful photo and very energizing smile

Forough

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

GREAT NEWS!  My mass has not grown or metastasized!!! Removal set for next Wednesday. Send good healing vibes!

mrou50
Posts: 389
Joined: Mar 2013

That is great news you have earned it.  Glad they are moving quickly to get this taken care of, thougts and prayers are with you.

 

Mark

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

Pepper , I am sorry you are dealing with two cancers at one time . I had a right kidney neph ,was in hospital for one day ,came home and daugther insisted I keep taking Pain meds , but i refused them after I got home . did really well ,except fatigue , also severe pain in right shoulder , was told it was gas , other than that it took me several mths to get my strenth back ,that has been almost 3 yrs ago. I hardly think about it now . Hope all goes well for you. You are brave. and an encourgement for me.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Expeliamus ite Rhenus!

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

I'm glad they are moving on removing it quickly.  Good luck with the surgery and recovery.  Keep us posted.

Stub

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

And you'll soon be on the mend.

God bless,

Donna~

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

I had Thyroid and Kidney cancers at the same time-the kidney was found during a CT scan to assess a tumour in my sternum.

It was 7 months of waiting before i had surgery.  Very stressful.

During my 6 month CT, a breast tumor was found.  Surgery a month later identified a Phylloides-very rare, 3rd rare cancer.

At that point I was sent for genetic testing.  I have Cowden Syndromem. Itself extremely rare.

 

Ive been waiting 2 years for a prophylactic double mastectomy.  Too late....now dealing with a huge mass in lumpectomy scar.  

 

So yes....i can relate.

 

Good luck with your surgery and heal fast.

 

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hello Rainsandpours! Nice to see you checking in here! I am so sorry to hear that you have another mass to deal with. I am hoping that whatever your medical plan of action is, works well - and quickly!

Take care!

Hugs

Jojo

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Oh my dear....ENUFF!!

Know that we're here for you and want to support you. Keep us informed hon.

Sending you healing hugs, and care~

Jan

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

I'm back home after a 2 day morphine-laced paloooza from the hospital...and I could see why they administer such strong pain meds after this particular surgery. as soon as they took if off IV night before departure, I was in constant pain that oxy couldn't even touch. I did manage to get the scoop on the Pathology Report during my hospital stay - and yep that sucker was legit cancer (urologist told me there was a 5-10% chance of it being cancer. It's Chromophobe RCC cancer- so I'm in company with the 5% others who are in this subtype. Urologist told me I'm NED and follow-ups will come- I'm presuming that will be with my MO. 

I walk like the Hunchback of  Notre Dame, need help to get out of chairs and tie my shoes, feel as if there's painful gas buildup in every single inch of my body. Thos who had these same kind of post-surgical issues, any tips/advice??? I could use all the good smart stuff- my poor husband had to do nearly everything after mastectomy and TE placement.

And this pain and discomfort is pushing me further away from going on with radiation to the breasts. I feel like I've been through enough already.

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

OH dear so sorry!

Use ICE!!! It reduceds the swelling, BUT I suspect its the GAS!! Gets trapped in areas where the pain meds cannot touch as its not in the bloodstream/intestines.

MOVEMENT, walk, walk,, walk, even if in place as soon as you can. NOw with a partner to hold onto, but yes, I have had several abdominal surgeries and found the most pain was from that GAS. Lasted about 4-5 days, then pow, gone ...finally!

Keep us informed, Take best care of you!

Oh and I doubt that they will pump you up for your breast surgery, but ASK Its mostly used for abdominal cuz there are so many organs in there.

Hugs, gentle ones, Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Is toughest but you will feel better day by day. Did you get a spirometer for breathing exercizes? Make sure you use it to get your lungs moving and avoid pneumonia. Walk a bit until it hurts then stop. Walk a bit more tomorrow. Walk to the front door. Walk down the path. walk to the nearest lampost and you wull get better with baby steps. They've cut bits out of you and moved other bits out of the way. I dont need to tell you, it will yake a while to recover. Jan's the expert.

Good luck. We're thinking of you.

icemantoo's picture
icemantoo
Posts: 3247
Joined: Jan 2010

Pepper,

 

The fist week is really rough,

 

You will get better each day with maybe a bad day in between.

 

 

Icemantoo

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Oh Pepper, so sorry to hear that you are in so much pain. As Iceman already mentioned, it will get better each day. Hang in there!

Hugs

Jojo

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Walk, because it'll get that miserable carbon dioxide out of your system.  Walk, because it'll get you additional endorphin deposits in your account so you can better kick pain's butt.  Walk, because it'll help you get your energy back.  Start out with however much you can handle -- 2, 3, or 4 minutes.  Work up to 5 minutes. Work up to once every three or four hours and gradually build up to every hour. 

Do the breathing exercises with the little plastic gizmo.  That puts endorphins in your account, too.  Another breathing exercise:  Breathe in for 4 counts, hold the breath for 6 counts, exhale for 8 counts. That helps to relax you and puts even more endorphins in your account. 

It definitely hurts to stand or sit up straight if you normally just use your core muscles to do it.  Try using your back muscles to pull down on your shoulder blades instead, even just a little (Keeping your shoulders down).  It really works -- You should notice your sternum rise slightly -- and your midsection will thank you for it. 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I'm sorry for your pain and discomfort but please keep posting about your experiences. I'll be following in your footsteps in two weeks.

I'm also sorry for your double cancer. I know there's no fairness in nature but getting two different cancers just seems wrong.

Steve.

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

Hi, Pepper.  I'm starting to wonder if those numbers for Chromies are correct.  Lately a lot of newly diagnosed people are reporting Chromophobe as their RCC.  My doctor gave me the same numbers as you after my pathology report came back.  I know we are just a small sample of people, but it sure is interesting.  As you know, Chromophobe is suppose to be less aggressive than the other RCC cancers.  That doesn't mean that it doesn't spread, which is why we need to be diligent with our follow-up scans. 

As far as the gas build up and the pain that follows--walking worked the best for me.  I had the pain in my right shoulder, so I rotated my arm a lot and that helped.  Keep moving, it will filter through your body and dissipate soon. 

Take care--and blessings

Stub

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Plus the little plastic gizmo!

APny's picture
APny
Posts: 1976
Joined: Mar 2014

I'm so sorry you're in such pain. But the advice to walk and walk some more is absolutely correct. I did a lot of walking while holding a pillow to my incision. It helped. ITA also about using the breathing apparatus. The first week is the worst with discomfort/pain then it improves rapidly. Hope you get some relief fast!

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

My kingdom for a poo!!!! I've tried everything. MiraLax, senna, prunes. 

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Senna S?  Laxative with a stool softener.

Hopefully you won't be on opiates much longer.

Hugs, Jan

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

For me I added MiraLax with prune juice.  It took a couple doses but relief FINALLY came.  If you've tried that, keep doing it.  Eventually the gates have to open;)

Good luck!

Stub

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

Coffee + prune juice = success! 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Can you get that at Starbucks?  I think I'd want some chocolate in there to make it a Prune Mocha. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

My oldest daughter is about to be managing her own Starbucks location and she says "No" to the prunes, but got a kick out of that.  Might be an idea though for seniors? A Pruney Frap?  haha  Oh wait, they all hang out at McDonald's don't they?  Tongue Out

Donna~

Sollaura's picture
Sollaura
Posts: 8
Joined: Jan 2017

Hi there! I just had a partial nephrectomy done robotically on December 6th. I went back to work right after Christmas. I had an open partial nephrectomy 10 years ago on the other side. That was a tougher surgery even though I was 10 years younger. The first two nights were not the easiest but much of that was being in the hospital. Once I got home it was much better. I stopped taking pain meds 4 days after the surgery. Robotic is precise and laproscopic was so much better than open. Take your time and one day at a time. I wish you all the best and will say a prayer for you!!

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