Endo Update

The drive was easy, the weather was pleasant, and I visited with some friendly folks while I was at M.D. Anderson Cancer Center. It is a nice hospital, and the staff is helpful and accommodating. It was, however, rather somber because it was evident that people were fighting for their lives everywhere I looked. Other patients I met traveled from out of state to see a doctor about their problems. I didn't feel like I belonged there and kept thinking I was not that sick. Even still, I had a good experience, and I am glad I moved my follow-up care there.

First, here's some pictures from my trip to Houston:

It was icing over in Dallas when I left...

but it looked like spring in South Texas!

Here were some of my questions for the endocrinologist and the answers I received:

Q. Is there any sign of pituitary failure or hypothyroidism? No, my thyroid is functioning well - all the labs came back normal.

Q. I was not able to nurse my daughter beyond 7 months postpartum because my milk production was so low. Why did this happen? He really didn't know - there is no evidence that suggests an existing pituitary condition caused this. Sometimes it just happens.

One of the reasons I went to M.D. Anderson looking for a new doctor is because my endocrinologist in Dallas said that a normal IGF-1 means there is no tumor. Therefore a patient doesn't need to have the Growth Hormone Stimulation Test. He believes a normal IGF-1 is sufficient to determine whether a patient is in remission from acromegaly. While I understood what he was saying it was a red flag to me because I had a normal IGF-1 with an abnormal GH test before surgery. My new endo says I have residual tumor, and he spent a lot of time explaining what he thought was going on. When I saw him last month, I didn't have my past MRI scans or records. I mailed them after my appointment and have been waiting for his response to my other questions:

Q. During my appointment it was mentioned that you think I have residual tumor. Now that you have reviewed my medical history and MRI scans do you still have this opinion? The doctor suspects there is residual tumor in the left cavernous sinus and that it is non-functioning or making GH to such a small degree that it's clinically irrelevant.

Q. Is a nonfunctioning/functioning tumor "better" than a full blown GH or prolactin tumor? Is it less agressive because it is only partly functioning? Nonfunctioning tumors can be aggressive in terms of growth (hard to predict) but my tumor is not clearly overproducing GH to warrant medical therapy. The plan will be to carefully monitor the residual tumor's growth, and if that happens, we can consider radiation.

The doctor believes there is evidence of residual on the MRI scan even though it is not seen in the blood work. I am over the shock of hearing that I have tumor, so I was not upset when he told me this. He says my tumor is partially functioning, which means it was not consistently producing excess GH or prolactin presurgery. He believes there is evidence of this in the tumor pathology and that I had a normal IGF-1 lab before the macroadenoma was removed. He thinks the residual left is not functioning right now, which is why my blood work is normal. The tumor could start functioning again, but right now it isn't. It's unusual for a person to have a partially functioning tumor. Most people have one or the other. What he said makes sense, and it explains why my IGF-1 levels were mild (barely elevated). He mentioned residual tumors could cause insulin resistance, but there's no evidence in the blood work to support this. Diet is the only way to control the episodes - eat small meals throughout the day and watch my carbs intake.

Since the remaining tumor in the left cavernous sinus is inoperable, the only options are to treat it with medicine or proceed with radiation. There is no excess GH or prolactin hormone to suppress, and radiation treatment could damage my pituitary gland so the doctor recommends we watch it. There is no need to do anything right now. As crazy as it seems that I can safely live with tumor on my carotid artery, he assured me it is okay. It's growing slowly, and he does not think it will erode the artery or invade my brain. At this time, it looks like I'll be going to Houston for any future check-ups. I'll return to M.D. Anderson in 6 months for a repeat MRI and bloodwork.

Peace of Mind Granted

My recent hormone levels indicate the acromegaly is still in remission and I can relax. I don't have the details right now but I've been assured by neurosurgeon that everything is good and my GH suppressed. I'll post the hormone numbers later. My IGF-1 level is still pending but I am not worried about that since the growth hormone suppressed below 1.0.

Dr. Kelly really went out of his way to help me and for this I am so grateful. The endocrinologist explained his stance on why he refused to repeat blood work. He feels that when IGF-1 and prolactin levels are normal this is sufficiently indicative of remission; therefore, the glucose suppression test is not needed. He said he thought I was the only one that asked to have the suppression test done and did not realize the suggestion came from the neurosurgeon. He felt the MRI report was "vague" in description of the mass(es) and it did not warrant further investigation. He made it clear that he disagrees with having the suppression test regularly as definitive testing even when there is questionable residual on the scan.

As you can imagine I am VERY relieved that the blood work is normal, especially when I consider my options concerning growth of any residual tumor next to my carotid artery. The location deems it inoperable. Dr. Kelly mentioned this shortly after my surgery when the macroadenoma was removed three years ago:

- August 31, 2005

“...should this [2mm] area in the cavernous sinus prove to be residual tumor, it would be an ideal target for radiosurgery and would likely not be amenable to further surgical removal given its location within the cavernous sinus.”

Given my endocrinologist's reluctance to put my mind at ease by ordering simple blood tests, I am considering moving any future appointments to a different doctor. I prefer to go to an endocrinologist that has an active interest in researching acromegaly, and so I am looking into MD Anderson Cancer Center in Houston as a possibility. Although it is evident I am still in remission, I shouldn't feel that I am annoying my doctor when I voice concerns about symptoms I am having or fear returning tumor. This is especially true when it is explicitly stated on MRI results that there is an area that is suspicious for residual tumor and it is slightly larger. There is no pathological evidence to support recurrence of tumor, but this area previously measured 2mm after surgery and it is now aprox 8mm. The neurosurgeon recommends that blood work be assessed every 6 months to be sure I remain in remission - this is just standard protocol.

Then & Now

Click to Enlarge

I am posting the most recent scan for comparison to previous years. The area in question has always been there and not changed in size. The scan I had done last year looked like the one I had in August of 2006 (seen above) so I am not posting it. The films have been sent to my doctor and I am awaiting his interpretation of my recent MRI.

**Note: the red arrow is pointing to the macroadenoma I had removed. The other arrow is pointing to tumor that had grown into the cavernous sinus on the carotid artery. This is the suspected residual. My labs have been in the normal range, and so the area in question has been considered to be scar tissue.

Prolactin Level While Nursing

Visit Source: kellymom.com Breastfeeding & Parenting

(Normal value ranges may vary slightly among different laboratories)

I got a call from my endo this morning. My prolactin level is 4.9. I guess this explains the lactation problem. My (pre-pregnancy) prolactin was 5.2 last year. I am amazed that I am producing any milk right now. I am so glad I had this checked out. At least now I know what my daughter's low weight is caused by; there is no doubt that she is not getting enough breastmilk. The doctor said this is "almost surely" due to my pituitary condition, and there is nothing I can do to increase my prolactin level. It is interesting to note that I did not have a pituitary condition (that I knew of) before I had Danielle. I asked if I needed to come in and discuss this further with him, but his nurse said he had no appointment available until November.

I feel like it's futile to try and continue nursing Danielle. I will feed her what little I can, but since she is weaning naturally, I expect I will mostly likely stop altogether soon. The bottle is certainly doing a better job than I can right now. I plan on going in for my annual MRI some time this month.

Feeding Baby Post Surgery

A couple weeks ago I started getting concerned about my daughter's weight. She seemed awfully small compared to what my other three children weighed at her age because she's not as chubby as I remember my other kids being. I began weighing her on the scale at home and noticed she wasn't gaining weight since her 4 month check up in June. I went digging through my children's baby books to see what their weight was at 6 months. All of them had more than doubled their weight and were above 16 pounds. Danielle was barely 13 pounds (she weighed 8 1bs 4 oz in February). I began to suspect my milk production was diminishing. At 4 months old Danielle began nursing constantly and her hunger wasn't satisfied so I started feeding her solids also to accomodate for her appetite. She wasn't showing signs of dehydration and all seemed normal except for her feeding frenzies. I was still nursing her around the clock, but I wasn't sure I was keeping up with my daughter's needs.

I took Danielle in for her 6 month check up last week and although she is doing well, her weight is in the 5% range (13 pounds 11 ounces). My suspicions were confirmed - she is under weight. Her little growth curve has taken a downward turn. I asked the pediatrician if he thought maybe she wasn't getting enough breastmilk and he said it was possible given my history of pituitary surgery; however, he was not too concerned because my daughter's length and head circumference is growing nicely. He recommended I try to up my milk production using Fenugreek, but he suggested I ask my doctor first because of my medical history. Fenugreek spurs on prolactin and the pituitary tumor I had was both prolactin/growth hormone producing so he wasn't sure it was safe for me. I could supplement (optional) and give her some Poly Vi-Sol vitamins to help.

When I got home I tried expressing milk during feeding time to see how much milk I was producing and I could barely get an ounce! This is very abnormal for me. I called my doctor and told him what was going on and wanted to see if there was any way to know whether something was wrong with my pituitary function and he said no. He said I cannot take Fenugreek or anything that would help with milk production because it might spur on tumor growth. He advised I supplement since there is suspicion of milk depletion.

This is strange - something's wrong. I fed all three of my other kids with ease for at least a year. Although I wondered if there would be an issue breastfeeding Danielle post-pituitary surgery I had no problems right after I delivered her. Her first few months she was thriving so there was no question as to whether I could breastfeed successfully. Now it appears I am not producing enough milk. I don't know what changed from May to now. I have drank more fluids and done everything humanly possible to change this. In light of the situation I am going to have to supplement and see if it helps with Danielle's weight gain.

Planning Ahead

I have recently received a flier from my neurosurgeon, Dr. Kelly, about two websites that have been created. They are very patient-friendly and offer an abundance of support and information regarding treatment for pituitary tumors:

Neuro-Endocrine Tumor Center at Saint John's Medical: "NETC's new comprehensive website is filled with outstanding current and accurate information. The website is designed for the patient. Dr. Kelly spent many hours writing medical content and meeting with the web-technicians to ensure that patients can use the site for education as well as a tool to help themselves and others...take time to watch a couple videos of our past support group meetings with friends and family!" - Sharmyn McGraw, Neuro-Endocrine Tumor Center's Pituitary Support Group Facilitator.

*Please note: NETC is now known as Pacific Neuroscience Institute.

Meet Sharmyn Mc Graw: A patient of Dr. Kelly's and former Cushing's sufferer. She has been in remission from the disease for several years. She is head of the Neuro-Endocrine Tumor Center's Pituitary Support Group in Southern California.

I would encourage you to take the time to sift through both sites. Treatment for pituitary tumors can be a life-altering experience; therefore, if you are thinking about having surgery or have been told it is necessary, it is important to be as educated as you can and plan. Dr. Kelly has put together an informative video where he addresses many questions people have when preparing for surgery. You can click here to watch the video or follow the link on the right side of my blog.

**Warning: the video does show a graphic video of the surgery being performed.

Two Years Later

This Sunday will be the anniversary of my brain tumor being removed two years ago. Two Years! My future seemed so foggy when I was first diagnosed with the tumor. I couldn't see things getting any better but only worse. I wondered if I'd even see my kids get older and how I would get through homeschooling and raising three kids after surgery for a brain tumor. I stood a chance of permanently damaging my pituitary or, worse, losing my pituitary altogether. Either way, I was expecting a lifetime of hormone replacement. Of course, the thought of drilling my head was so scary. Although I knew the tumor was not cancerous, this was going to be (still is) an ongoing life struggle. There was so much uncertainty.

I settled for just having a local neurosurgeon in Dallas take my tumor out, but no - my husband would not have it. He felt we needed to find the best surgeon, even if we had to pay cash to find him. David searched endlessly on the Net, looking for answers and clues about where to go. He took the reins in the whole thing, and I am so grateful for that. I had given up any hope of this having a good outcome. The thought of having a good prognosis with a brain tumor was just not in my mind, but David never gave up hope.

Before I had my tumor removed, Dave and I searched for information about acromegaly, hoping to read a personal experience from someone who had gone through this type of surgery. I found a lot of message boards and dry medical articles, but nothing too helpful or inspiring. I decided back then that when all was said and done, I would erect a blog and speak to my experience (provided I SURVIVED the operation - ha ha!!) because it was scary facing this alone. I have come thru this surgery with normal recovery so far. Radiation was not needed after all...although it may be in the future should the tumor rear its nasty head again. My pituitary is functioning perfectly to this day, and the most fantastic news of all - I am pregnant again! If someone had fast-forwarded my life from before the surgery to the present day, I'm not sure I would have believed it. My husband had a vasectomy six years ago, so another baby wasn't in our future, or so I assumed.

I am thankful to God for the outcome I have had with this surgery. Dr. Kelly did an excellent job in preserving my pituitary function when he removed the tumor, and he has continued to provide me with great care post-surgery. He has recently moved from UCLA to Saint John's Health and is now head of the neuro-endo department. So if any further treatment is needed, I will follow up with him there. David, my family, and friends have also been a tremendous support through this whole thing and I am so blessed to have them in my life.

I will end this blog with a repost of a journal entry I wrote shortly after I found out about my tumor.

- Sunday, May 29, 2005

Okay...so I think the circulation has returned to my limbs, and I picked myself off the floor and am ready to proceed to whatever is next in this illness. I've researched a little on pituitary tumors, and frankly, I'd rather have a couple more kids without an epidural before proceeding to brain surgery...but I suppose we'll have to take this situation and go with it one step at a time.

Yesterday Dave and I went on a date. It's been raining here in Texas and was raining pretty hard last night. We drove into a deep water puddle on the road at about 50 miles an hour. We spun around a couple of times with the tree, telephone pole, and cars in close view. Dave and I were silent through the whole ordeal-not even a scream! In the beginning, Dave tried to steer the vehicle to get control, but then we began traveling backward and sideward into a couple of spins. Dave finally let go of the wheel because we were going so fast and realized he had no control over the situation. He made some remark about that being "FUN." But, of course, it was not my idea of a fun date...ha. 

I am fortunate to be here typing something on this blog. Amazingly we stopped in the middle of the road with no scratch on the car or us (Thank you, LORD!) We spent most of our date at Sam's auto shop to make sure the car was okay and eatin' an appetizer of pretzels (sure beats a trip to the hospital!). Reflecting on this little scare we had last night, I've drawn parallels to what happened last night and the news of my tumor. Right now, I think Dave and I feel like we're spinning in the car with all the horrible things that could happen in our view. And we could try to hold the steering wheel and go in a particular direction, but the reality is that this is beyond our control. We'll have to ride it out and pray for the best outcome. Ultimately, my life is in God's hands, and my days are no less numbered than what God had ordained at my birth. I have to trust that this is just part of the plan he had for me. Last night I realized I could die in a car wreck before I die of a tumor. When everything settles, regardless of the outcome, I will be in a better situation than where I am today...

Not only did I come out of this ordeal with good results so far, now I am facing a direction in life I never thought I'd see again - labor and delivery!

Second Surgery Update - Unexpected Delay

My husband, the kids, and I drove to California early last week. My repeat transsphenoidal surgery was scheduled for June 15th at UCLA. I met with Dr. Kelly the day before surgery to discuss the procedure as well as my medical history and recent CT and MRI results. It is difficult to know if what is seen in the left cavernous sinus is a tumor. When there is uncertainty on the MRI, the labs usually reveal whether or not a tumor exists. My IGF-1 levels recently increased, so the doctor suggested I get a GH suppression test done, and the results were normal. My prolactin levels also came back normal. In my report, it is mentioned there is a "developing mass" on the right side. Still, my doctor thinks new growth or residual tumor is unlikely. To have new growth show up out of the blue in the cavernous sinus area would be almost unheard of; of course, this was good news. Until the lab work shows otherwise, doctors conclude that both areas in question are scar tissue. After my appointment, I went for lab work to prepare for the operation. 

The day of surgery arrived. Dave and I got up at two o'clock and headed into Los Angeles for check-in at 5:00 a.m. My surgery was to begin at 7:30 a.m. While I was in the surgical prep room, I met with an anesthesiologist who was a student resident at UCLA. He wrote down my medical history and noted that my period was late. He asked if there was any chance I could be pregnant. I told him I did not think so because my cycle has always been irregular, and my husband had a vasectomy six years earlier. The doctor and I agreed the chance was highly unlikely, and there wasn't a need to test for pregnancy, so I signed the consent forms to proceed with surgery. He began my intravenous line, but the vein in my hand blew to my horror. The doctor stood there speechless and looked bewildered as sweat dripped down his face. He quickly left the area to get help.

A few minutes later, another anesthesiologist walked in and was confused by the messy paperwork in front of me. She noticed I was applying pressure to my hand and asked what had happened. I explained that an attempt to start my IV was not successful. She left momentarily, and when she returned, she apologized and mentioned a last-minute mix-up. Apparently, I was removed from the other doctor's patient roster, but he didn't receive a notification. I spoke with this female doctor the night before and thought it odd that a different doctor saw me, but I didn't question the last-minute change. The new doctor reviewed my medical history, and she expressed concern about the late period. Even though pregnancy was not likely, she requested a test be ordered as a matter of procedure. She requires all patients of childbearing age to do this before they undergo surgery, especially if their cycle is off. 

An IV was started in my arm, and I was wheeled to the operating room without versed because my results did not come back immediately. I was placed on the operating table and strapped down for surgery. Finally, the room was ready, and a nurse called out the OR time...it was 7:29 a.m. The assistant surgeon and nurses were standing around waiting for a call from the laboratory. My neurosurgeon was on his way to the operating room. A few seconds later, the phone rings, and the anesthesiologist hands me a paper with the pregnancy test results written in bold red, "Positive." My surgery was canceled; It was a very surreal moment.

My husband and I didn't have a chance to meet with Dr. Kelly in person again, but he says I should be okay throughout the pregnancy with the titanium mesh; it needs to come out eventually, but not until after the baby is born. You'd think I would know if I am pregnant after having three kids, but the impending surgery has masked the symptoms. I thought my sick stomach and delayed period were caused by stress or residual tumor. However, based on the information I found on the Net, I wonder if the recent increase in my IGF-1 is due to pregnancy. I'll meet with my endocrinologist regarding the news of the baby and discuss this further with him. It's certainly been a wild few weeks!

*For information regarding my current health situation click here.

IGF-1 Climbing?

Since my surgery I have had (low) normal IGF-1 labs; because of this, it has been assumed that I am in remission from acromegaly. It seems the surgery was successful in removing most (if not all) of the tumor. However, my most recent MRI mentioned there was possibly residual tumor in the left cavernous sinus as well a developing mass on the right side of the cavernous sinus. My most recent IGF-1 was up a bit from 129 to 202.

Even though my Somatomedin-C (IGF-1) is considered normal, the result is higher from my previous reading 5 months ago. I asked my doctor if the fluctuation of my IGF-1 is normal or if this was an indication that residual tumor exists. He said it's hard to know for sure, and requested the glucose suppression test to be sure.

Growth hormone is supposed to supress below 1.0 ng/mL after my body is loaded with 75g of a glucose drink. Here are my results:

Baseline GH is 1.55 ng/mL
30 min 0.55
60 min 0.23
90 min 0.20
120 min 0.25

As you can see, my GH is completely normal. If there is residual tumor in the cavernous sinus, it is not producing excess hormone - this is great news!

Preparing for Another Surgery

Well, the surgery date is set. June 15th I'll be back in the operating room at UCLA to have the titanium mesh removed. I heard from my neurosurgeon. He's not sure there is residual tumor or new mass - he's going to compare my MRI's and get back to me on that. I will have blood work done because if there is a tumor, it will likely show up in the labs, so that will give me some insight into what (if anything) to prepare for. The most recent blood work (6 months ago) was completely normal, so I would be surprised if it weren't normal. As far as the surgery goes, if I have a CSF leak again, it will be repaired with a fat graft, and the titanium will not be placed back in my head.

This surgery is not as significant as the last time I went in - they won't have to cut through the dura of my brain but will be working below it. However, I'm still wrestling with having to go back under. This is an inconvenience - but life is full of inconveniences. The world seems to have no place for suffering - even though it is always present and around us. I know I don't have time for it! Comments such as, "Get-well soon..." are expressed even when someone will never get well. When a person has been handed a life of suffering - what do we say then? Naturally, we hope for the best, but words are difficult to find in these moments.

My grandfather was diagnosed with a rare form of cancer several years ago. He struggled with the disease for the remainder of his life; his last couple years revolved around weekly hospital visits and blood transfusions. He fought to get well until the very end. Death inevitably came. He died the day after I had my brain tumor removed. However, he used the final days of his life wisely. Instead of continually wallowing in self-pity (not that he never did - I'm sure he had his moments), he took the time to reflect on his life's happenings. He wrote a book recalling his life's personal highs and lows, ultimately defining who he was. He accepted his fate with dignity, and he found good even in suffering.

A source of encouragement for me has always been the life of Job in the Bible. He was given tremendous suffering - NOT that my life parallels that. When prayers are not answered in a way we desire, some people may think the suffering automatically must be some punishment from God. Perhaps it is not quite an issue in other countries. Still, in America the Gospel is often incorrectly promoted as a means to health, wealth, and happiness - this does not face the reality that Christians suffer as non-Christians do. Job's friends came around telling him he needed to repent because God had laid the problems in his life because of some unseen sin, but we read that God is sovereign even over Job's trials. As cruel as it may seem to some people that God would allow suffering - he has promised there is always good that can come out of it (Romans 5:1-5). We cannot escape disease or sickness - the world is full of it.

Last time I went through surgery, I thought my struggles were over for the most part - or at least for a while. I'm mindful that I may not remain infection-free or stay in remission forever. Either way, I believe the outcome is ultimately in God's hands. My prayer is to be content with whatever lies ahead, even if the prayers are not answered the way I hope they would be.