First Forum Ever Posted- Need Advice

IOWAmomOFtwo

Hello, 

I am almost (in 2 weeks) 24 years old. I have always read the forums but had yet to make a post. For the first time I am seeking advice, as this seems like a very supportive network. Whether or not cancer is my diagnosis, I do feel that some of the posters in these discussion boards may help me remain positive while seeking diagnosis. I have a health journal that I am going to be posting my information from, it is lenghthy so I will try to sum it up. Here is an overview of the things I have faced in the last year.

 

First of all I have always been relatively healthy. I had tonsils and adenoids removed at the age of 5 and remained healthy until the age of 14, when I wound up with mono. It took me years to recoop and feel 100% again. I went on to have two beautiful children. After they were born I began to have issues that were chalked up to IBS and endometriosis (clinically diagnosed, but not confirmed). I did not go on to concern myself... (note history with Mono..or.. EBV which raises the risks of lymphoma for myself slightly.

 My weight has always been approximately 120-125 pounds. The summer after my 2nd child was born I remained between 135 to 140 lbs and was not making any drastic changes to lose weight as I felt secure with myself.

 

Around July I began to have pain so severe in my stomach radiating from my ribs down into my pelvis, hips and back. I thought it might be caused by my birth control (mirena) and was informed it could take time for my body to get used to it. I wrote it off for awhile.  I began to have itchy skin all the time. No lotion helped with the itching, I even checked for bed bugs or other sources but it was a rashless, nagging itch. I then began to lose my hair and had lumps in the crevice between my jaw and neck just below my ear. I was informed that the hair loss could be associated with having a baby in the prior months. I had been alarmed that I had never lost that amount of hair after my first child. I wrote these symptoms off after speaking to a nurse on the phone even thought I didn't feel right about my symptoms.

 

 

In August after persistent pain in my stomach, persistent itching and still losing my hair,  I called to University of Iowa Hospitals and Clinics women's health unit where I had delivered and had my mirena inserted. They asked me to get my mirena checked to ensure it had not moved or perforated anything and assured me these symptoms could be from post partum or birth control that my body was "sensitive" and the hormones were causing my symptoms. I went to a family planning clinic and had all of the tests preformed for a routine screening and the pelvic exam revealed that my mirena was in the proper position. My results otherwise were normal. They prescribed a precautionary course of antibiotics for urinary tract infection and sent me on my way. I still occasionally had abdominal pain under my ribs which I associated with indigestion. 

 

In January while working an overnight I began to have a sore neck again. I noticed my throat itself did not hurt, just my neck where the lumps began to appear. I was working 12 hour shifts and assumed I was just getting run down. After arriving home not feeling well, with pain in my lower back and stomach cramps were so bad, I couldn't leave the couch. I took my temperature and it was up to 102.5. I took tylenol and ibuprofen to fend off the fever. The sickness took 2 weeks to completely go away before my swelling significantly declined. After the illness went away I was always cold. I would still work overnight 12 hour shifts and had to come to work with several layers on or I would find myself fighting shivers and chills all shift until I could go home and cover up. There were days it was hard to leave the couch due to feeling so cold all the time. I occasionally and infrequently would wake up sweating, thinking it was just a fever that had broken in the night and it would be followed by extreme sensitvity to cold. This persisted until Feb 6 when my daughter went in for surgery. 

 

February 6th my daughter had her tonsils removed and I had family to stay and help out during her recovery. I took this time to go buy some new clothes for myself, now having some much needed time off work. A few weeks after purchasing the clothes I noticed they weren't fitting me right anymore. After a few more rounds of buying new clothes it was well into the month of March and I had went from squeezing myself into a size 5 or 7 to trying to shrink my size 2 and 3 clothes to fit me. I shrugged this off and thought, "maybe this is the baby weight falling off." I also noticed I had gotten so skinny that my coats and jackets were twice the size of me. I could no longer wear a bracelette I had for 5 years due to my wrists being so small. I finally stepped on the scale to see the numbers dropped from 135 (consistent weight since March/April 2014) down to 120. I still thought nothing of this. I continued to shrink my clothes in the dryer with all of my efforts and they would fall off me within ten minutes of putting them on. I spent a few days in May where I was so cold that I had the goosebumps for almost an entire 12 hour shift. It was nearly 75 degrees on this day. I consulted to friends and family who hadn't seen me in awhile who reassured me that it was probably just a thyroid issue and I should have it checked soon.

 

In June of 2015 I became ill after my kids passed their germs over from an upper respiratory virus. It started with my neck hurting. I thought i slept wrong when i woke up. After I arrived home from work that night I noticed a red mark on my thigh. I touched it and noticed it was painful to the touch and it was hard and pea sized. The following day I woke up with a full blown cold. This illness consisted of fever, neck pain, sore throat, stuffy nose, cough, and ear pain (on the right side where the biggest lump was located), and multiple lumps in my neck and groin. I had random infrequent heart palpitations that caused me to feel dizzy and short of breath while they occured. I stepped on the scale the beginning of that week thinking I had eaten pretty well, despite being sick and wanted to see if I had gained much weight from the last time. That's when I hit my bottom. I weighed 110 pounds, weighing less than I did as a freshmen in highschool I got very concerned as did my loved ones. As I realized that symptoms faded away but the lumps remained and my weight had dropped down to 104.8, I finally took myself to urgent care to be checked out. 

 

At my visit with urgent care they took down notes about my medical history and my current infection. I informed the dr that I had not felt as run down and had so much neck and stomach pain since I had mono. She decided to check for palpable lymph nodes, which she found in mutliple areas of my body. She also ran a CBC and mono spot to see if I had any signs of infection. They called later to say that my blood count came back showing no signs of infection or anemia and referred me to my GP. I made an appointment for the following week.

 

I went to my GP who we had just switched to a few weeks prior. They weighed me and I still had not gained any weight. I informed my GP that my symptoms from the cold were gone my nodes were only decreased in size, but not gone. She ran more blood tests and a urine culture. My urine culture showed no signs of infection and no signs of sugar (diabetes). She told me she would call me in 2 days with my blood results. When she did get back to me about my results she informed me that they checked my thyroid function and my blood counts again and everything was checking out normal. She indicated that she would like to run 1 more test- a T4 test for thyroid. Those results checked out also. 

I could still feel my nodes up to this point in time, they were not noticeably LARGE throughout June into July. On July 12th I began to feel pain in the oppoisite ear that I had felt with the initial illness in the begninnging of June. The lymph node next to the opening of my ear on my jaw was enlarged, hard, and rubbery feeling. Simultaneously the lymph node in my right groin (next to where a previous node had swollen in June) was a large as the tip of my thumb and rubbery feeling also. The ache in my ear was shooting down into my neck and causing my throat to feel sore. I had a low grade fever from July 12-15 of 99.1-99.5. Taking tylenol and ibuprofen every 6 hours as needed for fever and pain and is helping a little bit. But I am still feverish and feeling very tired today. 

I am so sorry for the extremely long post, I just want to be thorough. Can someone advise me as to what the best step is to take next? Is there anyone who can sympathise with these symptoms and reassure me that they had a confirmed diagnosis of SOMETHING. I just want to know why I cannot gain weight or keep it on and why I keep getting sick with the same symptoms.

 

 

 

Sten

Troublesome

Hi IOWAmomOFtwo,

I am sorry that you have such problems. Only doctors can find out what your trouble is. I hope that you will get a proper diagnose soon, and that you will get well.

Sten

IOWAmomOFtwo

Sten said:

Troublesome

Hi IOWAmomOFtwo,

I am sorry that you have such problems. Only doctors can find out what your trouble is. I hope that you will get a proper diagnose soon, and that you will get well.

Sten

Thank you!

Hi Sten,

 

Thank your for the reply. In this case the symptoms, I have related to so many other things going on in life, until the weight loss. I took the first step at urgent care, then followed up with my primary care provider. I know that a doctor is the one who can make a proper diagnosis to these symptoms. I am just looking for some advice, based on these symptoms of where to go next. It's not a real "emergency", PCP can give referrals but has pretty much done all they could on their end. I thought maybe someone with similar symptomscould point me in the right direction. Is it too far to ask for an Onco/hemotologist? Endocrinologist? That's the advice I could really use. Either way I will be making some sort of trip to the dr soon for the recent illness I acquired. 

 

Thanks for the well wishes

Butterfli7

IOWAmomOFtwo said:

Thank you!

Hi Sten,

 

Thank your for the reply. In this case the symptoms, I have related to so many other things going on in life, until the weight loss. I took the first step at urgent care, then followed up with my primary care provider. I know that a doctor is the one who can make a proper diagnosis to these symptoms. I am just looking for some advice, based on these symptoms of where to go next. It's not a real "emergency", PCP can give referrals but has pretty much done all they could on their end. I thought maybe someone with similar symptomscould point me in the right direction. Is it too far to ask for an Onco/hemotologist? Endocrinologist? That's the advice I could really use. Either way I will be making some sort of trip to the dr soon for the recent illness I acquired. 

 

Thanks for the well wishes

Iowamomoftwo

Best advise I can give is to go to a cancer doctor especially if your insurance will cover it.  I had Hodgkins in 1987.  I had a node in my chest and neck.  I did not go to the cancer doctors to start with.  Mine was found in a chest xray.  The only node I knew I had was in my chest.  They sent me to a lung specialist thinking I had lung cancer.  They did a biopsy by pulling my ribs apart to get to the node.  I did not have lung cancer and the node was not in or on my lung.  It was a mass just under the rib cage area.  If the primary doctor had sent me on to the cancer doctor to start with it could have saved me alot of money and time.  When I went to the cancer doctor he found the one in my neck and told me the biopsy could have been done from the node in my neck and I would not have spent 4 days in the hospital from the chest biopsy.  I did not go to the oncologist first, I went to the cancer doctor that you go to before you are sent to the oncologist. 

This was 28 years ago.  I guess now it would be the hemotologist cancer doctor you go the first.  My symptoms were when I got my monthly cycles I would have a pain in my neck like a pinched nerve and some mild trouble breathing.  My symptoms would go away after my cycle.  This lasted for about 4 months.  Then I had a bad night with the breathing and went to the doctor.  That's when I went and had my chest xray. 

Everyone is different with their symptoms.  I wish you the best of luck. Keep listening to your body and don't give up on finding out what is going on with you. 

IOWAmomOFtwo

Butterfli7 said:

Iowamomoftwo

Best advise I can give is to go to a cancer doctor especially if your insurance will cover it.  I had Hodgkins in 1987.  I had a node in my chest and neck.  I did not go to the cancer doctors to start with.  Mine was found in a chest xray.  The only node I knew I had was in my chest.  They sent me to a lung specialist thinking I had lung cancer.  They did a biopsy by pulling my ribs apart to get to the node.  I did not have lung cancer and the node was not in or on my lung.  It was a mass just under the rib cage area.  If the primary doctor had sent me on to the cancer doctor to start with it could have saved me alot of money and time.  When I went to the cancer doctor he found the one in my neck and told me the biopsy could have been done from the node in my neck and I would not have spent 4 days in the hospital from the chest biopsy.  I did not go to the oncologist first, I went to the cancer doctor that you go to before you are sent to the oncologist. 

This was 28 years ago.  I guess now it would be the hemotologist cancer doctor you go the first.  My symptoms were when I got my monthly cycles I would have a pain in my neck like a pinched nerve and some mild trouble breathing.  My symptoms would go away after my cycle.  This lasted for about 4 months.  Then I had a bad night with the breathing and went to the doctor.  That's when I went and had my chest xray. 

Everyone is different with their symptoms.  I wish you the best of luck. Keep listening to your body and don't give up on finding out what is going on with you. 

Thank you for sharing!

Butterfli7, Oh my gosh. I do not feel like there is something in my lungs. However, my nodes in my groin are persistent and the same for my neck. I am going for a CT this week and hematologist/oncologist next week. I am astounded that my problems also started during my monthy cycles before I got pregnant and they believed it was my gall bladder and then went on to say it was probably endo. I wonder if the CT may show me that it could have been the nodes all along and it just took me this long to realize my nodes were enlarged continuously. All of my blood tests have shown up normal, and the only issues I seem to be facing are my previous symptoms now with a fever almost daily and high heart rate/blood pressure. I also had low BUN levels. I am staying optimistic until the drs do confirm something or nothing. I am hoping for an answer though! Thank for sharing your experience! 

Butterfli7

IOWAmomOFtwo said:

Thank you for sharing!

Butterfli7, Oh my gosh. I do not feel like there is something in my lungs. However, my nodes in my groin are persistent and the same for my neck. I am going for a CT this week and hematologist/oncologist next week. I am astounded that my problems also started during my monthy cycles before I got pregnant and they believed it was my gall bladder and then went on to say it was probably endo. I wonder if the CT may show me that it could have been the nodes all along and it just took me this long to realize my nodes were enlarged continuously. All of my blood tests have shown up normal, and the only issues I seem to be facing are my previous symptoms now with a fever almost daily and high heart rate/blood pressure. I also had low BUN levels. I am staying optimistic until the drs do confirm something or nothing. I am hoping for an answer though! Thank for sharing your experience! 

iowamomoftwo

Keep looking for the answer.  Sounds like you are on the right track.  Would really like to hear from your results if you don't mind sharing.  I am from North Carolina.  How old are your kids?  Mine were 3 years old and 3 months old at the time.  I look forward to hearing from you.  You are in my prayers.

IOWAmomOFtwo

Butterfli7 said:

iowamomoftwo

Keep looking for the answer.  Sounds like you are on the right track.  Would really like to hear from your results if you don't mind sharing.  I am from North Carolina.  How old are your kids?  Mine were 3 years old and 3 months old at the time.  I look forward to hearing from you.  You are in my prayers.

Lots in common!

My daughter is 3! My son is 1! I will definitely keep you updated. I am waiting for insurance preapproval to go through first and then I will have the scan, before monday since it is the only day the visiting onco is here and would like to proceed with the biopsy as soon as they can! Hopefully I will know more answers next week. I am from Iowa! I have Iowan friends who were in NC for 5 years on military base. I hear its beautiful there! Thank you so much for the prayers. Pending my results, I would really like to hear about how to cope with this with the little ones. It sounds like you could offer some advice there? Again, thank you for your response! 

 

Butterfli7

IOWAmomOFtwo said:

Lots in common!

My daughter is 3! My son is 1! I will definitely keep you updated. I am waiting for insurance preapproval to go through first and then I will have the scan, before monday since it is the only day the visiting onco is here and would like to proceed with the biopsy as soon as they can! Hopefully I will know more answers next week. I am from Iowa! I have Iowan friends who were in NC for 5 years on military base. I hear its beautiful there! Thank you so much for the prayers. Pending my results, I would really like to hear about how to cope with this with the little ones. It sounds like you could offer some advice there? Again, thank you for your response! 

 

keeping up with the kids

Hey Iowamomoftwo,

I was blessed with lots of help with the kids. My sister-in-law lived next door to me and when I got into my radiation treatments she would come over every night and give the kids a bath and take them over to her house to sleep there at night.  She would take me to my treatments every day and keep the kids anytime I needed her too.   That was hard for me since I am really an independent person and never liked to depend on help.  My Hodgkins took me to another place with that thought process. I took all the help I was offered.  My husband was not a hands on dad so when all this came about he mainly focussed on keeping the finances going.  I appreciated the fact that he was such a hard worker but would have welcomed more support from him emotionally.  In short to say no matter what they find if you need help with the kids don't hesitate to take it or ask for it.  People do want to help.  I hear a lot of people say when they had cancer a lot of their friends and relatives seemed to have vanished from their lives.  I think part of that is it's hard for people when they find out they have cancer, but we tend to forget it is hard for the people that know and love us also.  We are all different and handle things differently. I tried my best to let people know it is ok to say the work cancer around me and it is ok to ask me questions.  We are all here for you.