Bumpy ride 2 weeks post Radical Nephrectomy

beemurguia

Hello all...well just when I thought I was feeling better and more energetic 10 days post surgery my energy level plummeted and the day that I went for my 2 week follow-up, reported having a weird deep pain at my right side.  I can describe the pain as trapped air...everytime I breathed i would feel the stab of pain.  My Urologist didnt seem concerned so I let it go to...maybe still healing I thought.  Well he then proceeded to talk about how challenging my surgery was and he was concerned with the amount of growth since the CT scan.  He called my cancer an aggressive bad boy....as I listened my strength began to fade and words sounded so distant....such a strange feeling...so he proceeded to say that the tumor had grown into the lyphatic vein and that was concerning to him.  Now he originally said that after the nephrectomy I would not need to see an Oncologist.  Now he wants me to see an Oncologist...tomorrow is my visit.  

My Pathology report indicates the following:

Renal Clear Cell CArcinoma, Furhman grade 2,  11 cm in size, pT3a. (He said I was at stage 3 because of tumor size but I dont see that on the report)

So, after my visit with him I went to radiology for another scan, chest scan, to make sure it hasnt metastisized....I should have asked why this scan wasnt done prior to surgery....ugh!

I went home in a fog and still wimpering with each breath...it seemed to be worse...I thought it must be psypchosomatic symptoms...self induced pain? well it turned out to be a pulmonary embolism....had to rush to the ER because it didnt seem right....sure enough..drs confirmed it.  My platelet levels were off the chart...a side effect of cancer apparently....the blood clot in my lung was causiing the pain...now Im on blood thinners.

Im starting to feel overwhelmed and scared for the first time.  At this point plan on requesting or demanding if you will to be released to a Cancer clinic such as UCSF or Stanford...any suggestions on how to deal with Kaiser Permanente HMO? At this point have lost faith in my Drs...they seem to passive and so was I.  My bio teacher of 20 yrs ago recently friended me and it has been amazing to feed off of her positivity...she has an important role at CCSF and is wanting to help me out with letters to Kaiser.  She also has fought for her life and is taking me under her wing....such amazing people out there.  

I am open to suggetions and i will gladly share my experience in case it can be useful to anyone who needs to fight their insurance carriers...

Wishing ya'll a wonderful memorial weekend...Im puting things into perspective.  Many have paid the ultimate price to ensure our safety and civil liberties....I still have a fighting chance!

With love,

Bee

Steve.Adam

Hi Bee

Is the embollism ok now? Did it cause any other problems?

I was getting a heparin shot every day while I was in hospital as a standard precaution against blood clots after surgery. I didn't know that cancer effects platelets.

Steve.

beemurguia

Steve.Adam said:

Hi Bee

Is the embollism ok now? Did it cause any other problems?

I was getting a heparin shot every day while I was in hospital as a standard precaution against blood clots after surgery. I didn't know that cancer effects platelets.

Steve.

Hey Steve,

Hey Steve,

Yes did the shots for 5 days...now have to be on the oral meds (blood thinners) for a couple more months or possibly even longer term.  I sure am getting conflicting information.  ER doctor said that elevated platelet and blood clot was a side effect from cancer....but Oncologist today said that is incorrect...my blood clot happened because of the surgery...do some Drs just say what ever comes to mind? My platelets have always been in the low normal range and now were in the high range or slightly beyond...The oncologist did say because I had a blood clot that Im more at risk for future blood clots....Im feeling very defeated with other aspects of my health going south....are you still on blood thinners?

Retcenturion

Hope today is a better day Bee

Your ordeal sounds terrible. I hope your feeling better and can get your blood work controlled soon. It gets frustrating when you have to have more than 1 Dr in a decision making situation. Sending positive thoughts for speedy recovery.

Steve.Adam

beemurguia said:

Hey Steve,

Hey Steve,

Yes did the shots for 5 days...now have to be on the oral meds (blood thinners) for a couple more months or possibly even longer term.  I sure am getting conflicting information.  ER doctor said that elevated platelet and blood clot was a side effect from cancer....but Oncologist today said that is incorrect...my blood clot happened because of the surgery...do some Drs just say what ever comes to mind? My platelets have always been in the low normal range and now were in the high range or slightly beyond...The oncologist did say because I had a blood clot that Im more at risk for future blood clots....Im feeling very defeated with other aspects of my health going south....are you still on blood thinners?

Hi Bee

I've had no blood thinners since I was discharged.

Please don't be too discouraged about the embollism. It's probably normal to feel low so soon after surgery.

Steve.

sandy23

Hi Bee, it is my

Hi Bee, it is my understanding that an embolism causes elevated platelets.  I don't think I would be overly concerned about that but that is easy for me to say!!  

Did they have you taking precautions for blood clots after surgery?  I know my husband had those squeezy things (I'm sure they have an official name) on his legs and he had to move a lot.  As for having to worry about more in the future, I don't know why you would be any more likely to have one again, unless you are forced to lay in bed for an extended length of time.  And if you get a virus or something that causes you to be in a bed for a few days, do you think that you could take the blood thinner again, just in case?  I'm not sure how long you were supposed to be taking them.

Try not to get down.  It's so very hard, I know!!

david_w2

beemurguia said:

Hey Steve,

Hey Steve,

Yes did the shots for 5 days...now have to be on the oral meds (blood thinners) for a couple more months or possibly even longer term.  I sure am getting conflicting information.  ER doctor said that elevated platelet and blood clot was a side effect from cancer....but Oncologist today said that is incorrect...my blood clot happened because of the surgery...do some Drs just say what ever comes to mind? My platelets have always been in the low normal range and now were in the high range or slightly beyond...The oncologist did say because I had a blood clot that Im more at risk for future blood clots....Im feeling very defeated with other aspects of my health going south....are you still on blood thinners?

Take control.  If you have an

Take control.  If you have an HMO then you probably have to go to your PCP for a referral.  Tell your PCP you want a referral to an oncologist.  Then tell him which oncologist you want a referral to .  How do you know which one?  Research, reaearch, research.  Read every onlcologist's resume that is covered by your HMO.  Just like hiring an employee.  Go with the strongest resume you can find.  That's the one you tell your PCP you want a referral to go see.  For each and every doctor you see do the same thing.  It's your job to find the absolute best team of doctors your insurance provides.   Then start reading.  Keep reading, and then read somemore.  Learn exactly what has happened to people with your symptoms and what they did.  Then discuss with the team you have assembled.

Jojo61

Hi Bee,

Hi Bee,

That all sounded very frightening! I know doctors tend to gloss over some "typical" symptoms. I am so glad that you got to the hospital before anything more serious happened!

I am also Stage 3a, grade 2 with a 13 cm tumor with lymphovascular invasion - right kidney removed December 2013. I go for my scan very soon and there has been no looking back! Wishing you the same success. And so happy that you will be going to an oncologist....a uro-oncologist, I am hoping!

You go, girl!

Hugs

Jojo

JerzyGrrl

Good for you, Bee

You're definitely getting things under control. It might've been easy to just go back home after the doctor's appointment and crawl into bed, but you took the initiative to get to the ER in spite of everything. 

Having your teacher as an advocate sounds great. Taking on Kaiser can seem formidable, but it's totally doable. 

Keep us posted.

beemurguia

Jojo61 said:

Hi Bee,

Hi Bee,

That all sounded very frightening! I know doctors tend to gloss over some "typical" symptoms. I am so glad that you got to the hospital before anything more serious happened!

I am also Stage 3a, grade 2 with a 13 cm tumor with lymphovascular invasion - right kidney removed December 2013. I go for my scan very soon and there has been no looking back! Wishing you the same success. And so happy that you will be going to an oncologist....a uro-oncologist, I am hoping!

You go, girl!

Hugs

Jojo

Hi Jojo61, We are similar in

Hi Jojo61, We are similar in the Uro department...did your team recomment Chemo or any other treatment besides the radical nephrectomy? My oncologist basicly recomments watchful waiting...scaning and see if there is any change....but Im hopeful now that I know that you are doing well!!!

beemurguia

JerzyGrrl said:

Good for you, Bee

You're definitely getting things under control. It might've been easy to just go back home after the doctor's appointment and crawl into bed, but you took the initiative to get to the ER in spite of everything. 

Having your teacher as an advocate sounds great. Taking on Kaiser can seem formidable, but it's totally doable. 

Keep us posted.

Believe me...I conteplated

Believe me...I conteplated just getting in bed and hoping it would go away!!!!! Still feel that way!    But we need to move on and live life and just improve the quality of our lives...In my case just relax more, enjoy nice long walks and really trying to become vegan....baby steps though...very hard!!! ugh!  Baby steps...

Jan4you

Is it GAS related? THAT is

Is it GAS related? THAT is the most awful pain AND it does get trapped, unable to get OUT!!

Also, make sure they check your iron level. Take SlowFE OTC (non constipating) to build up your iron/

Sending you healing hugs,

Jan

foxhd

it's easy to say,

but, it takes time. Sometimes it's no fun.I'm sure when you look back in a couple months you'll see that you'll have come a long way. It will all get better.