Follow up MRI

[megthewonderful]

Just need some words of encouragement....

I am going for a follow-up MRI this week for a mass that was discovered in my chest 3 months ago. I've been to two separate thoracic surgeons who have both reassured me that I do not have cancer, but both believe I will need surgery to have the mass removed sometime in the future. If my MRI shows no change in the mass then I can go for another MRI in 3 months. Otherwise, I will need to have surgery, which requires my chest being opened up and a very long recovery. I am very worried since I have 3 kids under 4. I don't want to miss a minute of their lives.

Your thoughts and prayers are more valued than you will ever know.

 

[LeahA]

I will say a prayer for you and your family.

 

[mommasita]

Thought and prayers are on their way, and will be continuous.

 

[frdeb1999]

Nothing but good thoughts and prayers for you. Hope all turns out well.

 

[TaraPA]

I'll be thinking of you. Please keep us posted & let us know what they find.

 

[LMCT88]

My thoughts and prayers are with you. I had a similar situation years ago (the mass wasn't in my chest though, was on my ovary and was pretty scary as I had to wait to see what it would do had to wait 2 months) before they ended up doing surgery. I Thank God all the time as it was not Cancer. But the waiting drove me crazy I had so many emotions as at the time I had very young children like yourself. It turned out to be a mass of scar tissue related to endometriosis. I was very Thankful!! I am sending you good vibes and you are in my thoughts. Try to stay positive (I know thats hard to do). Take care of you. Feel free to PM me if you need any support!!

 

[Rustysmom]

 

[safetymom]

I will keep you and your family in my prayers. Hopefully you will receive positive news at the doctor.

 

[megthewonderful]

MRI went well. I was able to speak to a radiologist who told that the mass in my chest hasn't changed at all and still looks to be non-cancerous. However, he believes it is something that will merit surgery to have it removed. I am meeting with the surgeon next Wednesday to hear what her decision is. Now I am nervous about that!

Thanks for the support! I can't tell you what it means to me!

 

[safetymom]

You are welcome. I hope the surgeon can give you some good news if you need surgery. It's tough being a Mom and worrying about your family but you need to take care of yourself too!!

 

[megthewonderful]

Good news on the MRI and bad news....the good news is that it is a completely benign growth and they are going to take another look at it in 6 months.

The bad news is that within the next 1-2 years I definitely have to have it removed. Pretty major surgery with a long recovery time. Tough to know in the back of my mind that I am just waiting to have surgery, but I know I have to take care of myself. The concern is that over time the mass will grow and have a major impact on major arteries or veins near the heart or impact my right lung. The type of mass that has been diagnosed has a high rate of reoccurence. The doctor says that it is best to take it out while it is still small, because it then has less of a chance of reoccurence.

I am just so grateful that the mass in my chest is not cancer. Words just can not express how grateful I am. Now I have to try and live my life while waiting for surgery.

 

[bubba]

Knowing that surgery is down the road is hard. I waited 6 years until I finished having kids to have a benign growth removed from my ovary. My OB suggested waiting to preserve my fertility as infertility was definitely a possibility after surgery. After having DS5, I decided to go ahead and have the growth removed. Turns out that is was 'fed' by hormones and so had been growing and growing while I was pregnant. Ended up being the size of a cantaloupe and they had to remove my left ovary as well. What I really want to tell you, is use this time wisely. Get yourself in the best possible shape. Healthy eating, exercising, hydrating. It definitely makes a difference as to how well you tolerate surgery and will definitely IMO speed healing. Good luck ! I am so glad that the diagnosis for you wasn't cancer !

 

[Mackey Mouse]

I think I noticed that you were from NH and we have some great surgeons in our area, including Boston, so try not to worry and just go forward with it when you can. I agree with the previous poster, do get yourself in the best physical condition you can, build yourself up exercising or walking so that the recovery is better for you...Anytime you have to have anesthesia, you have to recover from that as well as the surgery.... Keep positive, I will keep you in my thoughts, and just try not to worry.

 

[Hanover]

Megthewonderful-our family's prayers are with you.

We unfortunately know EXACTLY what you are going through. In early February, our DS10 began having shortness of breath and chest pains while running in gym class. His blood pressure was very high and he had a normal temperature. His school nurse thought it was his asthma, but I knew in my heart something more was going on and insisted on taking him to his doctor. With in an hour he had a 101 fever that he had for 5 more days, he slept constantly and lost weight despite eating. They did an xray on him the first day I took him in and found an "atypical patch" on his right lung. He was given Zyrthomax in case it was pneumonia and they did blood work and ruled out TB,etc. He was checked daily for 5 days in the office for his breathing and vital signs. He was supposed to have another xray after the first 5 days. His blood work showed his white blood cells were extremely high so they decided to do a CT instead of afollow up xray. The office called us in several hours before we were supposed to go in for the results and told us to sit down in the exam room. The doctor told us he was sorry, that it was lymphoma and we had 2 hours to get to Johns Hopkins pediatric oncology where he'd begin radiation and possibly chemo that day, in addition to a biopsy. We were terrified. We got to Hopkins and they took multiple vials of blood, did a full exam by 2 ped oncologists and showed us the CT. The mass was the size of a grapefruit. It appeared to be over his heart and out of his right lung. They put his CT results up to a panel of oncologists, pulmonary physicians, infectious disease and surgeons. They said that they did not think it was coming out of his thymus, as originally diagnosed and did not think it was solid, as originally diagnosed, but a mixture of fluid and air. They said that they'd put him on Augmentin 3 times a day for a month and then do another CT in hopes the antibiotics would help shrink it. He continued to have chest pain/shoulder pains off and on and we watched him like a hawk. We were told the mass was pressing along a nerve, giving him the chest pains and shoulder pain. He went weekly for exams and blood work at Hopkins. The surgeons did not know if the mass was there since birth and grew and got infected or it could have just immediately grown and got infected. They had never seen anything like this at Hopkins. The surgeons said that if the infection was gone, the mass was like a petri dish and could still get reinfected and would need to be taken out. They even scheduled a surgery consult appointment the day after his 2nd CT scan. Three weeks ago he had the 2nd CT where the radiologist immediately came out and told us it had shrunk to the size of a golf ball. His lab work showed further decreasing white blood cells. They decided to skip the surgery and give him another weeks worth of Augmentin. Today he will be getting blood work to see if the infection has returned and he will get another CT in a month to see if the mass has shrunk further. He has had very little pain and has resumed most of his normal activities. If the mass is still there, they will speak to us about taking it out in the future. We were told that if surgery is needed, it may not need to be open chest.

I wish you the very best and hope you have a good outcome like our son has had so far. Try not to get discouraged. We have had many days of tears and the fear of "not knowing" was awful. They have 99% ruled out cancer which is great, but it's still a very scary situation. We have had friends and families in our area and in other states praying for us which has helped us emotionally. I know how difficult it is to go through what you are going through on top of being a mom and trying to keep up with everyday life. Try and stay positive. Good luck to you and keep us updated with your progress.

 

[Mackey Mouse]

Hanover, thanks so much for posting that for Meg. I know it is comforting to read that someone else may have something similar to what you have and have a positive outcome. I hope all went well today..

 

[Hanover]

No problem, I was desperate to read/listen to anyone that had anything similar to what my son has had and the outcome. It's always comforting to hear the positive responses to an illness and not all the negative ones that people like to tell you about. I'm also glad now that his local pediatrician can also tell another child's family with a child diagnosed with this condition that it may not be lymphoma. Our son's doctor had only ever seen one other case like his and it ended up being terminal cancer. I would have given anything to hear any kind of hope from him in his office that day. Of course he said cancer isn't a death sentence, but that we had a long road ahead with lots of treatments. When I asked about his experience with anyone else with a similar mass he said it had been terminal. This doctor had been a pediatric oncologist before coming to the practice and also said this kind of mass is extremely rare---like I said before, Hopkins hadn't seen anything like it either.

My son did have his blood work yesterday so I'm hoping to hear good news today. The lab worker did say he had a lot of scar tissue built up in his left arm vein from so many blood draws in the last 2 months. She had a tough time getting blood, where at Hopkins they said he had "pipelines" and would get it out easy, but they'd keep a line in that arm to access it. Has anyone else ever had scar tissue build up?

 

[Mackey Mouse]

Hi Hanover... my husband does have scar build up from all the blood drawn since we have been battling his illness. They have to call someone special in to draw his blood, especially after they do the nothing by mouth after midnight thing.....he is so dehydrated and so are his veins..

 

[megthewonderful]

Hanover, thank you so much for your posting. I am so happy that your son is doing better and is getting back to enjoy his childhood. Hopefully he will never need surgery, and if he does hopefully they will not have to open his chest.

I was told at first there was a chance it was lymphoma or a thymoma as well. I was in a panic since I have three kids under the age of 4. However, after a lot of blood work and a CT scan and now 2 MRIs was I told that it was a lymphangioma, which is bascially a cystic growth full of lymphatic fluid. The size of the mass shrunk also shrunk for me as well. The surgeon explained it to me as the pockets of fluid collapsing leaving behind scar tissue around the mass.

I have been to 2 surgeons in the Boston area and both agree I need to have my chest opened up to remove. Since there is a high chance of reoccurence that want to be sure they can remove all of it, and also because the mass is located a bit too far into the chest cavity to accurately remove it by going down through the neck.

Hanover, I hope your son's blood work came back and you got good news. I also need an IV team to put my IV in. I think it's a common occurence. They usually get it in on the first try. When I had my first child they tried 8 times before I begged the nurses to call someone else in to get it right.

Thanks everyone for their kind postings!

 

[Hanover]

MackeyMouse-thanks for letting me know about the scar tissue with blood draws. I didn't realize it could become scar tissue so fast. I'll make sure they take it out of his other arm next time.

Megthewonderful-you are welcome. Like I said earlier, I was grasping for anything anyone had experienced similar. It's tough not knowing what exactly the mass is and how it got there. They said without doing surgery, we may never know. He's had mulitple diagnoses including lymphoma, teratoma, mediastinal mass, and a bronchogenic cyst, but they were all ruled out. All they know is the mass wound up growing out of his lung and over his heart. It was huge on the CT and I felt like I was kicked in the gut when the oncologist first showed it. I felt so guilty not knowing he had it for probably a while, but he had no symptoms until that day in gym class. The oncologist said that if it were cancer, it would not respond to the antibiotics. They aren't sure if the mass grew over time and recently got infected or if it happened quickly. His blood work came back normal so that's a huge relief and hopefully points to the mass completely being dissolved. The surgeons at Hopkins said if it doesn't go away, chances are it would continue to get reinfected and would need to be removed. The last CT showed it was the size of a golf ball (from a huge grapefruit size) and had a lot of scar tissue. Sort of like a deflated balloon around the remaining mass. He'll have his other CT either late April or early May at Hopkins - we should find out next week the exact day. I know that in his previous weekly blood draws his white cells, red cells, platelets, lymph and one other (I forget but the oncologist said it was normal to be high for an infection) were all very high. His first lab work showed his white cells at 80,000 and they are down to 13,000. He had not had lab work in 3 weeks because they wanted to see if being off of them would reinfect the mass.

I'm not sure if it's Cedars Sinai or UCLA, but one of them do a procedure to go into the lungs without opening the chest. I'm not sure if your case could be done this way, but it's worth checking into if that's the area of your mass. My MIL's 85 y/o cousin just had it done about 2 months ago for a removal of suspicious lung tissue. Everyone else wanted to do open chest. I'll have to ask my MIL for sure what hospital it was at. My MIL came to one of DS10's appointments at Hopkins when they were talking about doing a biopsy that day and asked about that style of procedure being used and the oncologist said they knew about it, but hadn't used it. We, as you are, were very concerned about having his chest opened.

Good luck to you!

 

[megthewonderful]

Hanover - I am going to do some research online to see if there is anywhere in the Boston or NY area that could remove this mass without opening my chest. From what they have shown me and explained to me it lies right between my heart and my right lung. So, perhaps the closeness to the heart is why they feel they need to open my chest.

I hope your son continues to stay well. I can't imagine a child going through my experience or being a parent of child going through this experience. It's stressful enough for me and my husband and we haven't been telling our kids where we're going everytime we are at the hospital or the doctor's office because I don't want them to worry and I don't even know if they would understand they are so young.