Here's whats been happening - my little ramble

Kaleena
Kaleena Member Posts: 2,088 Member
in Uterine/Endometrial Cancer #1

Hi All:

I hope everyone is enjoying the summer (or winter depending where your locaton is).   As you may know, I have been experiencing many different types of symptoms.  The past several months, I went on a quest to find out exacty what is going on with me.  Here's a brief (hopefully) outline of what's been going on:

Symptoms:

left side pinching, some pain.   Abdominal cramping that increases throughout the day until I vomit (this happens every several months);  left sided headaches around my left eye and around the back with halo around my left eye and head pressure.  This comes and goes too.   Slight nausea - just enough that I don't feel like eating.  And, of course, the usual aches and pains of my joints, etc.  I have also began sweating under my arms again, sometimes rapid heart beat, and ocassionaly high BP.

These symptoms happen at varous times.  Some of them may last a month and then go away for awhile.

 

My Doctor Journey

Went to an ENT - he indicated everything seems fine and sent me on my way

Went to my regular Gyne to see whether I was experience menopause symptoms - He indicated that I have been in menopause since 2005 (once the removed my ovaries) so he didn't think anything of it.  He also indicated that my case was COMPLICATED, whatever that means.

Went to my Gyne/Onc - He ordered a new PET/CT.  He also said that if I have the abdominal cramping again to go to the doctors and get an x-ray to see if there is a partial bowel obstruction.

Went to Genetic Counseling - they are going to test my original pathology (from 2005) to see if it is Lynch Syndrome -results won't be availalbe to probably next week some time.

 

Most Recent PET/CT

Just had a PET done on Tuesday - this was compared to the one I had in February - since then my soft tissue mass (which was biopsied in April and those sample were negative) has grown slightly again - the thickness went from 1.5 to 1.9.   Also, the SUV reading, albeit minimal, went from a 3 to a 3.2. (originally 2.4) The biggest thing now is that I still have the moderate hydronephrosis; however, there is now interval mild parenchymal loss left kidney.  Although my doctor is not alarmed as whatever it is seems to be slow growing.  However, my doctor now wants the stent placed and also wants the urologist to do a brush biopsy.

Also, I also need to have a PET/MR (new scanning technic - way less radiation) before September 8th.

 

Here's my question to all of you - should I have the stent or would it be better just to remove the soft tissue mass?    I guess really I have to see the urologist and see what his/her thoughts are and I guess if the biopsy indicates there is cancer in the renal system, then there will be a much different protocol.

Thanks for listening to me ramble!

Kathy

 

 

Comments

  • Judemo
    Judemo Member Posts: 172 Member
    #2
    Kathy, I'm listening

    Hi Kathy! I'm sorry to hear you're having all these symptoms, discomfort, extra worry and extra doctor visits. It sounds like to me you're doing the right thing by following up with Dr. visits. Now since I am new to this cancer thing I won't have answers the way others with more experience will. But I can tell you that the worry and wanting answers right away is so frustrating.  Although I'm a nurse, I don't have all the answers. But I do have a few questions. Are you having decreased urine output? what did your renal doctor say the benefits were for you to have the stent first? I do know kidney issues are very important to deal with. Our heart and our kidneys go hand-in-hand. You're not having any chest pains are you? Are your doctors telling you all different answers? I would think they would do the brush biopsy first just to see what they were dealing with? But I'm not a doctor and Im new to all of this. Just know that I'm thinking of you and let me know how it goes. 

    jude

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    Judemo said:

    Kathy, I'm listening

    Hi Kathy! I'm sorry to hear you're having all these symptoms, discomfort, extra worry and extra doctor visits. It sounds like to me you're doing the right thing by following up with Dr. visits. Now since I am new to this cancer thing I won't have answers the way others with more experience will. But I can tell you that the worry and wanting answers right away is so frustrating.  Although I'm a nurse, I don't have all the answers. But I do have a few questions. Are you having decreased urine output? what did your renal doctor say the benefits were for you to have the stent first? I do know kidney issues are very important to deal with. Our heart and our kidneys go hand-in-hand. You're not having any chest pains are you? Are your doctors telling you all different answers? I would think they would do the brush biopsy first just to see what they were dealing with? But I'm not a doctor and Im new to all of this. Just know that I'm thinking of you and let me know how it goes. 

    jude

    Thanks Jude

    Thanks for your reply Jude.  I am not having any chest pains.   My urine output was fine, but lately I have noticed a slight decrease.   I haven't met with a renal doctor yet so I will wait to see what he/she has to say.  I still have to find one and schedule an appointment.  All I know is that I want to keep an eye on this because my last PET was in February and this PET was Tuesday and it had already changed albeit slightly but all the same still changing.  I will let you know once I see the urologist.   

    The hard part about seeing all of the doctors is when they tell you everything is fine when you feel yucky and you know something isn't right.  So my husband and I developed a check list to rule out certain things.  I just have to find the right doctor for the right symptom.  Although this week (knock on wood), I don't feel too bad.

    Thanks for thinking of me.   I hope you are doing well.

    Kathy

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #4
    I'm listening, too,

    Hi, Kathy,

    Just want you to know that I wish you were not continuing to have so many unpleasant and unsettling symptoms.  It sounds like you are doing all the right things to try to get to the bottom of this.  When you described the headaches and left eye symptoms it reminded me of how my father suffered from cluster headaches.  His pain seemed to originate in his eye and his eye would tear.  I think I remember that you said that you have been to a neurologist and that the doctor couldn't find a cause for these symptoms.  When you mentioned a stent, were you talking about a port?  I guess that I wouldn't want a port unless the mass indicated that one was needed.  Hopefully, the mass will turn out to be benign and a non-issue.  I pray that you will be just fine.  Please keep us up-to-date and informed.

    Hugs and best wishes to you,

    Cathy

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    Abbycat2 said:

    I'm listening, too,

    Hi, Kathy,

    Just want you to know that I wish you were not continuing to have so many unpleasant and unsettling symptoms.  It sounds like you are doing all the right things to try to get to the bottom of this.  When you described the headaches and left eye symptoms it reminded me of how my father suffered from cluster headaches.  His pain seemed to originate in his eye and his eye would tear.  I think I remember that you said that you have been to a neurologist and that the doctor couldn't find a cause for these symptoms.  When you mentioned a stent, were you talking about a port?  I guess that I wouldn't want a port unless the mass indicated that one was needed.  Hopefully, the mass will turn out to be benign and a non-issue.  I pray that you will be just fine.  Please keep us up-to-date and informed.

    Hugs and best wishes to you,

    Cathy

    Thanks, Cathy

    Thanks for listening, Cathy!

    With regard to the headaches, I was either thinking the cluster headaches, migraines, or something to do with my pituitary since on my brain MRI/MRA it showed that I had an empty sella.  I will continue to investigate that.

    With regard to the soft tissue mass, I did have that biopsied through a CT guided core biopsy and those samples were negatives.  However, it continues to grow (slowly) and the SUV readings are also increasing.

    I did have a port in for chemo when I was first diagnosed and it stayed in for 6 years because no one wanted to remove it.

    The stent is for the ureter (the tube that goes from the kidney to the bladder).   The ureter goes through the soft tissue mass and the mass is constricting the tube thereby causing an obstruction. The stent is to prevent an obstruction.   But after this most recent PET, it appears that my left kidney is now being affected.   Due to this new development, even if it is not cancer, I may need to have the mass removed or may have to have the stent in to prevent my kidney from being destroyed.

    I will let you know once I see a urologist.  The nuclear department called me today and said that I have a PET/MR scheduled for Sept 3rd.   I will also tell you about that once I get it done since it is a new scanning technic.   

    Hey, anyway for now, I am feeling ok this week - headache and pain wise that is.

    Thanks for the hugs and wishes.

    (((Hugs)))

    Kathy

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
    Kaleena said:

    Thanks, Cathy

    Thanks for listening, Cathy!

    With regard to the headaches, I was either thinking the cluster headaches, migraines, or something to do with my pituitary since on my brain MRI/MRA it showed that I had an empty sella.  I will continue to investigate that.

    With regard to the soft tissue mass, I did have that biopsied through a CT guided core biopsy and those samples were negatives.  However, it continues to grow (slowly) and the SUV readings are also increasing.

    I did have a port in for chemo when I was first diagnosed and it stayed in for 6 years because no one wanted to remove it.

    The stent is for the ureter (the tube that goes from the kidney to the bladder).   The ureter goes through the soft tissue mass and the mass is constricting the tube thereby causing an obstruction. The stent is to prevent an obstruction.   But after this most recent PET, it appears that my left kidney is now being affected.   Due to this new development, even if it is not cancer, I may need to have the mass removed or may have to have the stent in to prevent my kidney from being destroyed.

    I will let you know once I see a urologist.  The nuclear department called me today and said that I have a PET/MR scheduled for Sept 3rd.   I will also tell you about that once I get it done since it is a new scanning technic.   

    Hey, anyway for now, I am feeling ok this week - headache and pain wise that is.

    Thanks for the hugs and wishes.

    (((Hugs)))

    Kathy

     

    Your continuing saga

    So sorry this continues, Kathy.  That you have a mass (whatever it is) seems to really concern you (it would me, too).  It's hard to accept that there is nothing found when you have symtpoms that have got to mean something.  I hope you get to the bottom of all this soon and that the issues can be fixed. 

    For whatever it's worth, I have a couple of lumps and bumps that are apparently lipomas.  If one was to grow and cause a problem (like with my kidneys) I think I would want it outa me.  This seems like a valid reason (pain, urinary and kidney issues) to have it removed.  It doesn't have to be cancer to cause symptoms.  In fact, my sister had surgery for a very large (baseball sized) lipoma in her abdomen that was causing her pain.  It had to be growing because it wasn't alway there and it was huge.  When we grow something that causes a problem, my vote is to take it out. 

    Keep following up as long as you have symptoms.  Good Luck

    Suzanne

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #7
    Double Whammy said:

    Your continuing saga

    So sorry this continues, Kathy.  That you have a mass (whatever it is) seems to really concern you (it would me, too).  It's hard to accept that there is nothing found when you have symtpoms that have got to mean something.  I hope you get to the bottom of all this soon and that the issues can be fixed. 

    For whatever it's worth, I have a couple of lumps and bumps that are apparently lipomas.  If one was to grow and cause a problem (like with my kidneys) I think I would want it outa me.  This seems like a valid reason (pain, urinary and kidney issues) to have it removed.  It doesn't have to be cancer to cause symptoms.  In fact, my sister had surgery for a very large (baseball sized) lipoma in her abdomen that was causing her pain.  It had to be growing because it wasn't alway there and it was huge.  When we grow something that causes a problem, my vote is to take it out. 

    Keep following up as long as you have symptoms.  Good Luck

    Suzanne

     

    Kathy

    Bless your heart, you've been through the mill and no real answers!  I'm with Suzanne, if it grows AT ALL and it causing problems I'd want it out ASAP!  Just my opinion but why wait for it to get  too  big and cause kidney damage?  I hope you could maybe get on a cancelation list for the new scan before Sept.3.  That makes me nervous!  Take care, Debrajo

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #8
    debrajo said:

    Kathy

    Bless your heart, you've been through the mill and no real answers!  I'm with Suzanne, if it grows AT ALL and it causing problems I'd want it out ASAP!  Just my opinion but why wait for it to get  too  big and cause kidney damage?  I hope you could maybe get on a cancelation list for the new scan before Sept.3.  That makes me nervous!  Take care, Debrajo

    Thanks Suzanne and Debrajo!

    Suzanne and Debrajo,

    Thanks for responding and giving me your opinions.   I really appreciate it.   I have avoided treatment since 2010 and took a wait and see approach with regard to the lymph node that was removed that had microscopic cells in it.   However, since this mass is now starting to damage my kidney and it was only about 4 months ago that it was ok, how long can it last the way it is?   As you can see, I am talking out loud to help me with my decisiion    You know once your kidney is damaged, it can never repair itself (anyway from what I have read on kidney stuff from mayo clinic and other reputable sites).   

    My other concern is if this mass keeps getting bigger (whether slow or not), that it can push everything and start to effect my heart.   I am starting to get intermittent high blood pressure.

    Also, for the brush biopsy, I guess they want to rule out renal cancer since the mass is probably hiding it.

    By the way, Debrajo, what makes you nervous about that new scan?

    Thanks everyone for all the support.  You all are the greatest!

    Kathy

  • Judemo
    Judemo Member Posts: 172 Member
    #9
    Kaleena said:

    Thanks Suzanne and Debrajo!

    Suzanne and Debrajo,

    Thanks for responding and giving me your opinions.   I really appreciate it.   I have avoided treatment since 2010 and took a wait and see approach with regard to the lymph node that was removed that had microscopic cells in it.   However, since this mass is now starting to damage my kidney and it was only about 4 months ago that it was ok, how long can it last the way it is?   As you can see, I am talking out loud to help me with my decisiion    You know once your kidney is damaged, it can never repair itself (anyway from what I have read on kidney stuff from mayo clinic and other reputable sites).   

    My other concern is if this mass keeps getting bigger (whether slow or not), that it can push everything and start to effect my heart.   I am starting to get intermittent high blood pressure.

    Also, for the brush biopsy, I guess they want to rule out renal cancer since the mass is probably hiding it.

    By the way, Debrajo, what makes you nervous about that new scan?

    Thanks everyone for all the support.  You all are the greatest!

    Kathy

    I bet she just wants you to be scanned much sooner!

    have you ever had a CT scan show up positive for a mass or something then have a PET scan after and have it be negative? I'm going to stay up to date with your story.  I wonder what your renal blood work shows and are you taking anything for blood pressure?  Sounds like renal constriction could be causing higher BP? Do you hate my questions? Does it make things worse to speculate? But these are things that I think about. Hang in there!

    jude

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #10
    Judemo said:

    I bet she just wants you to be scanned much sooner!

    have you ever had a CT scan show up positive for a mass or something then have a PET scan after and have it be negative? I'm going to stay up to date with your story.  I wonder what your renal blood work shows and are you taking anything for blood pressure?  Sounds like renal constriction could be causing higher BP? Do you hate my questions? Does it make things worse to speculate? But these are things that I think about. Hang in there!

    jude

    Hi Jude:
    No, I don't hate

    Hi Jude:

    No, I don't hate your questions.   It is good to take in any and all information.  I do not take any medicines at all other than motrin for pain, etc.   Usually my BP is low.  It has only been recently that it has been fluxuating.  I too have read that a renal constriction can cause an increase in blood pressure.   I just received my BUN and my Creatinine results back today.   My BUN is 17, however my Creatinine is a 1.07 (still in normal range)  However, it has been increasing from .70 then .80 and now 1.07.   So this is something I think I should watch.

    With regard to scanning, etc.  originally I was told I did not have cancer - and even had a laparascopy and an ultrasound - but after hysterectomy surgery they found it.   Then I would told I had a recurrence - all my scans indicated everything was in normal range - however a biopsy of a mass revealed recurrence - then again after surgery the mass was negative but a lymph node was positive.  

    My most recent biopsy was negative, but my current PET scan indicate mild activity

    Now you know why my case is somewhat complicated.

    I will keep you informed as stuff develops

    Kathy

    PS   My recent PET scan was July 15th

  • Judemo
    Judemo Member Posts: 172 Member
    #11
    Kaleena said:

    Hi Jude:
    No, I don't hate

    Hi Jude:

    No, I don't hate your questions.   It is good to take in any and all information.  I do not take any medicines at all other than motrin for pain, etc.   Usually my BP is low.  It has only been recently that it has been fluxuating.  I too have read that a renal constriction can cause an increase in blood pressure.   I just received my BUN and my Creatinine results back today.   My BUN is 17, however my Creatinine is a 1.07 (still in normal range)  However, it has been increasing from .70 then .80 and now 1.07.   So this is something I think I should watch.

    With regard to scanning, etc.  originally I was told I did not have cancer - and even had a laparascopy and an ultrasound - but after hysterectomy surgery they found it.   Then I would told I had a recurrence - all my scans indicated everything was in normal range - however a biopsy of a mass revealed recurrence - then again after surgery the mass was negative but a lymph node was positive.  

    My most recent biopsy was negative, but my current PET scan indicate mild activity

    Now you know why my case is somewhat complicated.

    I will keep you informed as stuff develops

    Kathy

    PS   My recent PET scan was July 15th

    Kathy, what does your BP range when you check it?

    You do a great job keeping up with your tests and follow ups. Last night I typed up what's going on with me over in GYN cancers other then uterine & ovarian discussion board because there are other things going on that I'm waiting to see what my DR sais about them. I just happened to look at my online health records portal & that's where I found I had a DX of endocervical adenocarinoma, and intraepithelial neoplasia of cervix, vagina & vulva Grade III.  But, my GYN Onc never talked to me about this. I'm awaiting biopsies of uterus bc he suspects adenocarinoma of uterus as well......anyway, I had a couple more questions for you. Do you share your cancer details with your friends and family?  Do you feel like your in good medical hands? Do you feel like you have to push for certain tests or are your DRs on the ball for you?  I must say, I don't feel isolated anymore since I joined this wonderful network of people! And last but not least, did you mention that you were having back pain recently? Ok, I'll let it rest for now! sorry for all the questions.

    Jude

  • debrajo
    debrajo Member Posts: 1,095 Member
    #12
    Kaleena said:

    Thanks Suzanne and Debrajo!

    Suzanne and Debrajo,

    Thanks for responding and giving me your opinions.   I really appreciate it.   I have avoided treatment since 2010 and took a wait and see approach with regard to the lymph node that was removed that had microscopic cells in it.   However, since this mass is now starting to damage my kidney and it was only about 4 months ago that it was ok, how long can it last the way it is?   As you can see, I am talking out loud to help me with my decisiion    You know once your kidney is damaged, it can never repair itself (anyway from what I have read on kidney stuff from mayo clinic and other reputable sites).   

    My other concern is if this mass keeps getting bigger (whether slow or not), that it can push everything and start to effect my heart.   I am starting to get intermittent high blood pressure.

    Also, for the brush biopsy, I guess they want to rule out renal cancer since the mass is probably hiding it.

    By the way, Debrajo, what makes you nervous about that new scan?

    Thanks everyone for all the support.  You all are the greatest!

    Kathy

    sorry

    I ment to say the PET /MRI on Sept 3 in your post of July 17.  It  was late and I got my terms mixed up...and ANY test, scan, x-ray, ect makes me nervous!!!  Debra 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #13
    debrajo said:

    sorry

    I ment to say the PET /MRI on Sept 3 in your post of July 17.  It  was late and I got my terms mixed up...and ANY test, scan, x-ray, ect makes me nervous!!!  Debra 

    No need to be sorry, Debra, I

    No need to be sorry, Debra, I thought you might have known something more about that test than I - lol  But I will definitely let you know how it goes!

    Kathy

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #14
    Judemo said:

    Kathy, what does your BP range when you check it?

    You do a great job keeping up with your tests and follow ups. Last night I typed up what's going on with me over in GYN cancers other then uterine & ovarian discussion board because there are other things going on that I'm waiting to see what my DR sais about them. I just happened to look at my online health records portal & that's where I found I had a DX of endocervical adenocarinoma, and intraepithelial neoplasia of cervix, vagina & vulva Grade III.  But, my GYN Onc never talked to me about this. I'm awaiting biopsies of uterus bc he suspects adenocarinoma of uterus as well......anyway, I had a couple more questions for you. Do you share your cancer details with your friends and family?  Do you feel like your in good medical hands? Do you feel like you have to push for certain tests or are your DRs on the ball for you?  I must say, I don't feel isolated anymore since I joined this wonderful network of people! And last but not least, did you mention that you were having back pain recently? Ok, I'll let it rest for now! sorry for all the questions.

    Jude

    Online Portals

    Jude,

    I too look at my online portal.  Thats how I find out that they don't always put down exactly what you say.   For instances, when I was having that bad abdominal cramping and vomiting, I called my doctor's office and spoke with the nurse practioner.  Who, like before, said that is not concerning for a recurrence and it could be the flu ie.   But when I looked at the online portal, she wrote that I had some cramping and nausea - which is competely different than I said.  I said that I had NO nausea, just bad admoninal pain which got worse until I vomited.   I then took this up with the doctor when I met personally with him and he now says if I have that again (I get it every couple of months) that while I am in that condition I would  need to go get an x-ray to see if it could be a partial bowel obstruction because once you vomit or the pain goes away, they are unable to detect it.

    Yes, I have changed physicians several times since my original doctor retired and then passed away.   Then my favorite doctor moved to Texas.   I then saw another doctor but after reading what he wrote on my charts (through the online portal) after a brief and I mean brief appointment with him, I changed to my current doctor who I am pleased with.   The doctor before my current one rushed through my appointment because he was extremely behind (please know that it takes me 3 hours to get to this office) and when I read the chart it indicated that he did a rectal exam which I know for sure that he didn't and my husband was there and said he didn't.   We now have the 3 strikes your out when it comes to doctors for when we are searching for one for various ailments.

    I like my doctor now.  He does listen to me and even though he said I don't need a PAP, he knew I was concerned because my last two PAPs were abnormal and HPV positive.  He doesn't believe in doing PAPs because he said it doesn't show recurrent endometrial cancer and that any precancerous things detected now for cervical would or could take 10 or more years to develop if it actually does.   Anyway, he did a PAP because he knew I was concerned about it.

    Also, through this site here I learned to ask different questions to my physicians that I woud never have thought of.   This site is good too because a lot of women have the same concerns, face the same problems, and have very similar feelings and symptoms.   Even though everyone is different, you can find some similiarities.

    BLOOD PRESSURE:   My usual blood pressure ranges 130/63 and all things between.   I went to the doctor one day it was 107/68 and then when I went to the ENT two days later it was 180/102. and then it was back down again.  But what I have been reading, this increase could be caused by the problem I am starting to have with my left kidney and that it why I am definitely going to check this out.

    I really hadn't shared much of my cancer with friends or family members outside my immediate family.   Just a few close friends.  It has only been recently that I have indicated to some that I am a cancer survivor.   But telling or not telling is a personal thing and I don't feel that there is a right way or a wrong way it was just the way that helps you through it.

    Thanks for asking these questions.   I hope I was able to give you some answers.

    Kathy

    P.S.  My left sided lower back aching pain has subsided for now - I still get left sided pinching side pains though.

  • TAyers
    TAyers Member Posts: 86 Member
    #15

    I know surgery can be invasive, but I am pretty sure I would have it removed, after all you have been through I would want to be aggressive.Out of curiosity have they checked your adrenal gland? i will be praying for some answers. Tami 

  • Judemo
    Judemo Member Posts: 172 Member
    #16
    Kaleena said:

    Online Portals

    Jude,

    I too look at my online portal.  Thats how I find out that they don't always put down exactly what you say.   For instances, when I was having that bad abdominal cramping and vomiting, I called my doctor's office and spoke with the nurse practioner.  Who, like before, said that is not concerning for a recurrence and it could be the flu ie.   But when I looked at the online portal, she wrote that I had some cramping and nausea - which is competely different than I said.  I said that I had NO nausea, just bad admoninal pain which got worse until I vomited.   I then took this up with the doctor when I met personally with him and he now says if I have that again (I get it every couple of months) that while I am in that condition I would  need to go get an x-ray to see if it could be a partial bowel obstruction because once you vomit or the pain goes away, they are unable to detect it.

    Yes, I have changed physicians several times since my original doctor retired and then passed away.   Then my favorite doctor moved to Texas.   I then saw another doctor but after reading what he wrote on my charts (through the online portal) after a brief and I mean brief appointment with him, I changed to my current doctor who I am pleased with.   The doctor before my current one rushed through my appointment because he was extremely behind (please know that it takes me 3 hours to get to this office) and when I read the chart it indicated that he did a rectal exam which I know for sure that he didn't and my husband was there and said he didn't.   We now have the 3 strikes your out when it comes to doctors for when we are searching for one for various ailments.

    I like my doctor now.  He does listen to me and even though he said I don't need a PAP, he knew I was concerned because my last two PAPs were abnormal and HPV positive.  He doesn't believe in doing PAPs because he said it doesn't show recurrent endometrial cancer and that any precancerous things detected now for cervical would or could take 10 or more years to develop if it actually does.   Anyway, he did a PAP because he knew I was concerned about it.

    Also, through this site here I learned to ask different questions to my physicians that I woud never have thought of.   This site is good too because a lot of women have the same concerns, face the same problems, and have very similar feelings and symptoms.   Even though everyone is different, you can find some similiarities.

    BLOOD PRESSURE:   My usual blood pressure ranges 130/63 and all things between.   I went to the doctor one day it was 107/68 and then when I went to the ENT two days later it was 180/102. and then it was back down again.  But what I have been reading, this increase could be caused by the problem I am starting to have with my left kidney and that it why I am definitely going to check this out.

    I really hadn't shared much of my cancer with friends or family members outside my immediate family.   Just a few close friends.  It has only been recently that I have indicated to some that I am a cancer survivor.   But telling or not telling is a personal thing and I don't feel that there is a right way or a wrong way it was just the way that helps you through it.

    Thanks for asking these questions.   I hope I was able to give you some answers.

    Kathy

    P.S.  My left sided lower back aching pain has subsided for now - I still get left sided pinching side pains though.

    I somehow missed your reply till now Kathy!

    Thank you for your helpful answers & for taking the time to do that and update me and all of us.  You still have managed to work full time through all of this?  wow!  

  • SUNGRANNY
    SUNGRANNY Member Posts: 81 Member
    #17
    Thinking of you

    Dear Kathy,

    I don't have much to add to the excellent responses of others, except to say that I'm sorry to hear you are going through this, I wish you well, and do keep listening to your own inner wisdom.

    Cyber hugs,  Sara

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #18
    SUNGRANNY said:

    Thinking of you

    Dear Kathy,

    I don't have much to add to the excellent responses of others, except to say that I'm sorry to hear you are going through this, I wish you well, and do keep listening to your own inner wisdom.

    Cyber hugs,  Sara

    Sara - Thanks

    Thanks for the hugs, Sara!   It is good just to know someone is listening.

     

    Kathy

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #19
    New Developments

    Well after I got the results from my most recent PET scan, I was also told to get another blood test.    

    Here are the results:

    BUN  - 17  (within normal)

    Creatinine - 1.07 (went from .70 to .89 and now to 1.07)  this is just above the normal at this facility but within the normal where my gyne/onc is.

    eGFR  - 56  (was in the 70s)    this is just below the normal

     

    There is definitely something going on with my kidney and I am still in the process of finding an urologist who is also qualified with oncology and is close to my home.

  • laura25
    laura25 Member Posts: 181 Member
    #20
    Kaleena said:

    New Developments

    Well after I got the results from my most recent PET scan, I was also told to get another blood test.    

    Here are the results:

    BUN  - 17  (within normal)

    Creatinine - 1.07 (went from .70 to .89 and now to 1.07)  this is just above the normal at this facility but within the normal where my gyne/onc is.

    eGFR  - 56  (was in the 70s)    this is just below the normal

     

    There is definitely something going on with my kidney and I am still in the process of finding an urologist who is also qualified with oncology and is close to my home.

    Hi Kathy

    Hi Kathy...   After all these tests are the doctors telling you anything?  You must be so fustrated, I'm so sorry.  I hope you find an urologist quickly so you can get the answers you need!

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