Every year new tumors grow.
As I said in my last entry, I have pulmonary nodules. I also have this weird blob like thing in the right side of my lung. I have been monitored to make sure they remained stable, etc. They were first found when I had a PET scan last August (the PET was done to ensure my NF tumor wasn't cancer and to see if my liver tumor was visable- there was no liver tumor as other MRI's suggested). I had a follow up in November- no change. I was actually excited to get a chest CT at the time I did- I haven't been breathing right. I don't feel that 'refreshed' feeling when I take in a deep breath. In order to get that 'refreshed feeling' I have to REALLY breathe in HARD. So I wanted to see if the nodules were bothering my airways (I was told they could bother my airways, so I assume my nodules are the culprit)
Well this is what it says now: (this is my CT scan)
Lungs and airways: Examination of the lungs demonstrates that the 1cm groundglass opacity remain stable in the right upper lobe on image 23/series 2. Separately, there is a [sic] evidence of new pulmonary nodules. Tiny nodules remain along the right minor fissure image 44, and in the right upper lobe image 40.
Pleura: The pleural spaces remain clear
Heart and mediastinum: There is no evidence of mediastinal or hilar lymphadenopathy. Residual thymic tissue remains. (<--I am quite certain that last part is scar tissue from my cancer surgery- correct me if i'm wrong?)
Soft tissues: There is no evidence of axillary lymphadenopathy
Abdomen: A limited view of the upper abdomen demonstrates a hyperdense lesion in the liver image 89/series 2 measuring 1.5 cm, stable
Bones: No evidence of lytic or sclerotic process
IMPRESSION: History of Neurofibromatosis
Stable pulmonary nodules
My impression
I'm concerned about the new pulmonary nodules. My NF doc didn't tell me about these new growths. I read it for myself. When I see my PCP on Tuesday I will talk to her about getting me a pulmonologist. I emailed my old PCP who moved away (she gave me her personal email address) with names of some pulmonologists and she had a very good recommendation for me. I love her.
I also want to know what this damn opacity blobbish thing is....hopefully a lung doctor can tell me!!!
There was nothing specific about where my nodules are and if they are what's bothering my breathing...maybe something is pressing agaisnt my diaphragm??
The liver tumor, though- I need to see my gastroenterologist. Yes, the doctor- I really can't stand ONLY because going to a different one for this won't help me. this guy knows my history! And just so you know, the blog entry I linked about me not liking my gastro doc gives a small history of what I went through before my left abdominal tumor was found. I don't like seeing this hot shot- but things will be worse for me if I suddenly go to a new guy. It sucks. He's the only one that knows anything about my liver tumor that comes and goes in scans!!! I want to know if this one has grown, too. I can't find copies of old MRI reports ANYWHERE. The liver tumor was first found in June 2010. It disappeared July 2010- and was not in any scans since then until now. (I had another MRI in September, another one in January 2011 and a Pet August 2011). My gastro doc is on sabbatical until September so I can't see him until then...but I was notified by a nurse that if my symptoms become unbearable, namely my breathing (I think perhaps the growth is pressing against my diaphragm) that I can see a covering physician before my regular doc returns. I want answers for this on both ends- my gastro doc and my pulmonologist. Somebody's gotta give me an answer!
MY MRI REPORT
Anyway-- the most pressing issue is my pelvis. This has been the source of my pain since April 2011. words in [ ] = explanation.
FINDINGS:
Evaluation of osseus structures demonstrates normal bone marrow signal intensity. No evidence of fracture. The sacroiliac joints are unremarkable. The labral cartilage of the bilateral hips appears grossly intact. [meaning, bone structure is normal for both sides]
Evaluation of soft tissues demonstrates innumerable T2 bright cutaneous [above the skin] and deep nodules. The largest cutaneous nodlue is seen overlying the right hip on series 4/image 32, measuring 1.3 by 1.8 cm with significant enhancement. [this is Rosie]. The largest deep lesion is seen in the right piriformis muscle, measuring 1.6 x 0.8 cm, T2 bright with mild postcontrast enhancement [meaning lighting up after contrast was injected]. A smaller adjacent lesion is also noted. Additional muscular lesions are seen within the right gluteus medius and right later abdominal wall and right rectus abdominis. There is suggestion of slight muscular asymmetry with minimal decrease in size of the right piriformis muscle [meaning the tumor in that muscle has made it uneven with my left side]. Elsewhere, the muscles appear symmetric without evidence of focal atrophy. The visualized lumbar and sacral nerve roots appear unremarkable.
Evaluation of the pelvic viscera demonstrate bilateral ovarian cysts [cysts on both ovaries], the largest measuring 1.7 cm in the right ovary. No free fluid. Suggestion of an acruate uterus (tipped uterus).
- findings suggest tumors are NF tumors-- no surprise- I wasn't worried about cancer or anything-
Things I want to say
1) the MRI says there's no comparison, but there is-just not with that hospital. My abdominal MRI from last year, in January 2011 showed the ones in the rectus abdominis/lateral abdominal wall. The piriformis, the adjacent tumor and the gluteus medius are new. They would have shown up on my PET last August. I want to know if the lateral/rectal ones grew. Maybe they didn't. Maybe they did. I wish they were measured! Maybe one of my doctors can see from the images when I bring it to them- whether it's my gastro doc or my pain doc- somebody will be able to tell me, I hope!
2) my NF tumors are TINY but since they're on nerves, they are still painful. I can't imagine what people with NF go through when tumors are huge if the pain I have is so bad when they're small!!!
3) I never ever had this many cysts on my ovaries. I've always been told i had 1 and it was follicle. This suggests PCOS or Endometriosis. Waiting to meet with a gynologist. My left ovary is apparently covered in cysts too and I NEVER have pain- sometimes it feels uncomfortable, but it doesn't HURT. So I'm wondering why my right pains are now (by my NF doc) being attributed to my ovary only. I hate that because I'm female, and because the pain is in my pelvic area, then OBVIOUSLY it's my ovaries!!!! I'm not denying the ovaries MIGHT be a problem, but this pain is the SAME pain I had with my left retroperitoneal tumor. THE SAME. Ovary pain is different. When I had my first ovarian cyst, it was painful, but not the 'I can't function right now' type- it just felt like something was about to pop. The pain I'm going through is pulverizing, grinding,grating and burning. When discussing nerve pain with my doctors before, I learned that nerve pain IS NOT ALWAYS constant! So whatever. We'll see- I just have to get a hold of my doctors! This is not always easy.
4) My pain want from the very tip of my leg (at the bottom of my pelvis) and has since moved to my upper hip area. Now let me show you the pictures of the locations!
Right piriformis muscle
The tumor I have is right at the base of my pelvis near my spine. I don't know where the adjacent one is....my NF doctor only showed me the tumor here- it was really a worthless visit. I'm so mad.
Right gluteus medius
See how it's at the top of my hip? That's where the pain is
I think most of my pain comes from my piriformis and my gluteus medius, though...but on to the next pictures:
Right lateral abdominal wall
It just means the side abdominal wall, meaning, skin above my hip that's still in my pelvis area (the MRI was not of my abdomen)- still along my ilio inguinal nerve as the third picture shows
and finally- the right rectus abdominis
If you look at the brighter red, the tumor was somewhere below the belly button on the right side. It doesnt' say WHERE on my scan, but I only had my pelvis scanned, so it can't be but so much higher than my hips.
I at first thought my scar tissue would show up- but the scar from my surgery last year is on my LEFT side of my rectus abdominus.
So all of these tumors are in the path of where I've been in pain (but like I said, the first two pictures are probably the main reason)! I wouldn't be surprised if my right ovary is also a culprit. I bet when my ovary inflames, it touches one of my nerve tumors, and then my nerve tumors have a chain pain reaction. When my piriformis tumor was growing it would react with my left retroperitoneal tumor- ohh when they played off on each other, that was soo debilitating! Now with all these other nerve tumors in a similar location- no wonder why I'm often so incapacitated!
The question I've been getting a LOT is this: what next?
There's really nothing that can be done until the pain is beyond astronomical. For now, my pain only lasts 10-15 days. The pain is definitely getting more intense, but it only lasts 10-15 days. My left retroperitoneal tumor only hurt for a few days at a time for YEARS before it became out of control. It was this slow moving TORTURE chamber in my body. I don't know what will happen with these tumors. Maybe they'll bother me for 10-15 days at a time, maybe it will eventually become constant. For now, i'm grateful that it's not an every day thing and will take it one month at a time. Now that I know what's wrong with me, I don't feel as bad about taking my medication. I at least have relief!!!
To ease my assymetrical muscles, I could probably do physical therapy. That will be what's best or me.
I am not going to worry about surgery until I absolutely can't function. When the pain comes, I can barely function but at least it's temporary. I'm afraid about my well being when I do get a new job. My graduate assistantship is SOOO flexible, and I can take time off if I need. What if I can't get that in my new job? Oh well. I can't make assumptions- just got to see how things go from month to month.
But yay I'm so so so glad I am getting answers!
Looking forward to learning more about my cysts. That whole area is just defunct. New cysts that cover my ovaries-- on both sides, uterine polyps... whatever is wrong with my cyst is giving me man-face. It's so upsetting. I wouldn't mind just getting all of that crap removed. I'm not having kids anyway. I'm too much of a genetic mess AND my gynecologist is worried with my pain that my body wouldn't handle a pregnancy well. I definitely don't want to spread my defunctness to children. Thankfully John is supportive. I have a d&c scheduled for my polyps and hopefully I'll get a real diagnosis- do I have endo? do I just have polyps AND cysts? is it all NF? gahh!
Oh I forgot to mention- last week I had an ilio inguinal nerve block. It didn't help. I've explained the ilio inguinal pains in previous blog entries but this one goes into more detail. My injection was given in my rectus abdominis (haha now I can use these anatomical terms freely!). I think the needle went through a tumor because it hurt a lot hahaha- it felt like something was there. So maybe the tumor I discussed above is in that part of my rectus abdominis! I wanted to try the shot to see if PERHAPS I could take less oxycodone. Alas. Opiates shall be my life!
I am scared about what will happen to me as years go on. If these tumors grow this year- where will they grow next year? Will I get new pains? I hate NF.
Anyway, that's the update!
As I said in my last entry, I have pulmonary nodules. I also have this weird blob like thing in the right side of my lung. I have been monitored to make sure they remained stable, etc. They were first found when I had a PET scan last August (the PET was done to ensure my NF tumor wasn't cancer and to see if my liver tumor was visable- there was no liver tumor as other MRI's suggested). I had a follow up in November- no change. I was actually excited to get a chest CT at the time I did- I haven't been breathing right. I don't feel that 'refreshed' feeling when I take in a deep breath. In order to get that 'refreshed feeling' I have to REALLY breathe in HARD. So I wanted to see if the nodules were bothering my airways (I was told they could bother my airways, so I assume my nodules are the culprit)
Well this is what it says now: (this is my CT scan)
Lungs and airways: Examination of the lungs demonstrates that the 1cm groundglass opacity remain stable in the right upper lobe on image 23/series 2. Separately, there is a [sic] evidence of new pulmonary nodules. Tiny nodules remain along the right minor fissure image 44, and in the right upper lobe image 40.
Pleura: The pleural spaces remain clear
Heart and mediastinum: There is no evidence of mediastinal or hilar lymphadenopathy. Residual thymic tissue remains. (<--I am quite certain that last part is scar tissue from my cancer surgery- correct me if i'm wrong?)
Soft tissues: There is no evidence of axillary lymphadenopathy
Abdomen: A limited view of the upper abdomen demonstrates a hyperdense lesion in the liver image 89/series 2 measuring 1.5 cm, stable
Bones: No evidence of lytic or sclerotic process
IMPRESSION: History of Neurofibromatosis
Stable pulmonary nodules
My impression
I'm concerned about the new pulmonary nodules. My NF doc didn't tell me about these new growths. I read it for myself. When I see my PCP on Tuesday I will talk to her about getting me a pulmonologist. I emailed my old PCP who moved away (she gave me her personal email address) with names of some pulmonologists and she had a very good recommendation for me. I love her.
I also want to know what this damn opacity blobbish thing is....hopefully a lung doctor can tell me!!!
There was nothing specific about where my nodules are and if they are what's bothering my breathing...maybe something is pressing agaisnt my diaphragm??
The liver tumor, though- I need to see my gastroenterologist. Yes, the doctor- I really can't stand ONLY because going to a different one for this won't help me. this guy knows my history! And just so you know, the blog entry I linked about me not liking my gastro doc gives a small history of what I went through before my left abdominal tumor was found. I don't like seeing this hot shot- but things will be worse for me if I suddenly go to a new guy. It sucks. He's the only one that knows anything about my liver tumor that comes and goes in scans!!! I want to know if this one has grown, too. I can't find copies of old MRI reports ANYWHERE. The liver tumor was first found in June 2010. It disappeared July 2010- and was not in any scans since then until now. (I had another MRI in September, another one in January 2011 and a Pet August 2011). My gastro doc is on sabbatical until September so I can't see him until then...but I was notified by a nurse that if my symptoms become unbearable, namely my breathing (I think perhaps the growth is pressing against my diaphragm) that I can see a covering physician before my regular doc returns. I want answers for this on both ends- my gastro doc and my pulmonologist. Somebody's gotta give me an answer!
MY MRI REPORT
Anyway-- the most pressing issue is my pelvis. This has been the source of my pain since April 2011. words in [ ] = explanation.
FINDINGS:
Evaluation of osseus structures demonstrates normal bone marrow signal intensity. No evidence of fracture. The sacroiliac joints are unremarkable. The labral cartilage of the bilateral hips appears grossly intact. [meaning, bone structure is normal for both sides]
Evaluation of soft tissues demonstrates innumerable T2 bright cutaneous [above the skin] and deep nodules. The largest cutaneous nodlue is seen overlying the right hip on series 4/image 32, measuring 1.3 by 1.8 cm with significant enhancement. [this is Rosie]. The largest deep lesion is seen in the right piriformis muscle, measuring 1.6 x 0.8 cm, T2 bright with mild postcontrast enhancement [meaning lighting up after contrast was injected]. A smaller adjacent lesion is also noted. Additional muscular lesions are seen within the right gluteus medius and right later abdominal wall and right rectus abdominis. There is suggestion of slight muscular asymmetry with minimal decrease in size of the right piriformis muscle [meaning the tumor in that muscle has made it uneven with my left side]. Elsewhere, the muscles appear symmetric without evidence of focal atrophy. The visualized lumbar and sacral nerve roots appear unremarkable.
Evaluation of the pelvic viscera demonstrate bilateral ovarian cysts [cysts on both ovaries], the largest measuring 1.7 cm in the right ovary. No free fluid. Suggestion of an acruate uterus (tipped uterus).
- findings suggest tumors are NF tumors-- no surprise- I wasn't worried about cancer or anything-
Things I want to say
1) the MRI says there's no comparison, but there is-just not with that hospital. My abdominal MRI from last year, in January 2011 showed the ones in the rectus abdominis/lateral abdominal wall. The piriformis, the adjacent tumor and the gluteus medius are new. They would have shown up on my PET last August. I want to know if the lateral/rectal ones grew. Maybe they didn't. Maybe they did. I wish they were measured! Maybe one of my doctors can see from the images when I bring it to them- whether it's my gastro doc or my pain doc- somebody will be able to tell me, I hope!
2) my NF tumors are TINY but since they're on nerves, they are still painful. I can't imagine what people with NF go through when tumors are huge if the pain I have is so bad when they're small!!!
3) I never ever had this many cysts on my ovaries. I've always been told i had 1 and it was follicle. This suggests PCOS or Endometriosis. Waiting to meet with a gynologist. My left ovary is apparently covered in cysts too and I NEVER have pain- sometimes it feels uncomfortable, but it doesn't HURT. So I'm wondering why my right pains are now (by my NF doc) being attributed to my ovary only. I hate that because I'm female, and because the pain is in my pelvic area, then OBVIOUSLY it's my ovaries!!!! I'm not denying the ovaries MIGHT be a problem, but this pain is the SAME pain I had with my left retroperitoneal tumor. THE SAME. Ovary pain is different. When I had my first ovarian cyst, it was painful, but not the 'I can't function right now' type- it just felt like something was about to pop. The pain I'm going through is pulverizing, grinding,grating and burning. When discussing nerve pain with my doctors before, I learned that nerve pain IS NOT ALWAYS constant! So whatever. We'll see- I just have to get a hold of my doctors! This is not always easy.
4) My pain want from the very tip of my leg (at the bottom of my pelvis) and has since moved to my upper hip area. Now let me show you the pictures of the locations!
Right piriformis muscle
The tumor I have is right at the base of my pelvis near my spine. I don't know where the adjacent one is....my NF doctor only showed me the tumor here- it was really a worthless visit. I'm so mad.
Right gluteus medius
I think most of my pain comes from my piriformis and my gluteus medius, though...but on to the next pictures:
Right lateral abdominal wall
and finally- the right rectus abdominis
If you look at the brighter red, the tumor was somewhere below the belly button on the right side. It doesnt' say WHERE on my scan, but I only had my pelvis scanned, so it can't be but so much higher than my hips.
I at first thought my scar tissue would show up- but the scar from my surgery last year is on my LEFT side of my rectus abdominus.
So all of these tumors are in the path of where I've been in pain (but like I said, the first two pictures are probably the main reason)! I wouldn't be surprised if my right ovary is also a culprit. I bet when my ovary inflames, it touches one of my nerve tumors, and then my nerve tumors have a chain pain reaction. When my piriformis tumor was growing it would react with my left retroperitoneal tumor- ohh when they played off on each other, that was soo debilitating! Now with all these other nerve tumors in a similar location- no wonder why I'm often so incapacitated!
The question I've been getting a LOT is this: what next?
There's really nothing that can be done until the pain is beyond astronomical. For now, my pain only lasts 10-15 days. The pain is definitely getting more intense, but it only lasts 10-15 days. My left retroperitoneal tumor only hurt for a few days at a time for YEARS before it became out of control. It was this slow moving TORTURE chamber in my body. I don't know what will happen with these tumors. Maybe they'll bother me for 10-15 days at a time, maybe it will eventually become constant. For now, i'm grateful that it's not an every day thing and will take it one month at a time. Now that I know what's wrong with me, I don't feel as bad about taking my medication. I at least have relief!!!
To ease my assymetrical muscles, I could probably do physical therapy. That will be what's best or me.
I am not going to worry about surgery until I absolutely can't function. When the pain comes, I can barely function but at least it's temporary. I'm afraid about my well being when I do get a new job. My graduate assistantship is SOOO flexible, and I can take time off if I need. What if I can't get that in my new job? Oh well. I can't make assumptions- just got to see how things go from month to month.
But yay I'm so so so glad I am getting answers!
Looking forward to learning more about my cysts. That whole area is just defunct. New cysts that cover my ovaries-- on both sides, uterine polyps... whatever is wrong with my cyst is giving me man-face. It's so upsetting. I wouldn't mind just getting all of that crap removed. I'm not having kids anyway. I'm too much of a genetic mess AND my gynecologist is worried with my pain that my body wouldn't handle a pregnancy well. I definitely don't want to spread my defunctness to children. Thankfully John is supportive. I have a d&c scheduled for my polyps and hopefully I'll get a real diagnosis- do I have endo? do I just have polyps AND cysts? is it all NF? gahh!
Oh I forgot to mention- last week I had an ilio inguinal nerve block. It didn't help. I've explained the ilio inguinal pains in previous blog entries but this one goes into more detail. My injection was given in my rectus abdominis (haha now I can use these anatomical terms freely!). I think the needle went through a tumor because it hurt a lot hahaha- it felt like something was there. So maybe the tumor I discussed above is in that part of my rectus abdominis! I wanted to try the shot to see if PERHAPS I could take less oxycodone. Alas. Opiates shall be my life!
I am scared about what will happen to me as years go on. If these tumors grow this year- where will they grow next year? Will I get new pains? I hate NF.
Anyway, that's the update!
Comments
Post a Comment