Neck Dissection during pregnancy/thyroid cancer

apa11 · March 2014

Hi, I've just recently come back to the bump after being away for the last couple years since my first child was born. I apologize this is a long post, but I'm kind of desperate to hear if others have gone through a similar situation as I will have very important decisions to make in the next few days.

I have a long history of thyroid cancer and several months ago found out i had a recurrence in lymph nodes (orig dx & total thyroidectomy '98). I'm seeing an ENT & endocrinologist at MD Anderson. They try not to over-treat since it's a slow-growing (papillary) cancer. My doc lead me to believe that I would not likely need surgery immediately (maybe in next couple years) at check up in July. I discussed with him that we were waiting on his okay to TTC baby 2…he indicated it's personal preference because the cancer will not grow quickly and some young women prefer to have babies then deal with it (while others want to get it out first since it is a source of stress). My husband & I tentatively planned to TTC beginning this summer. I just went back for most recent appointment since they're "watching and waiting" and Dr said "ok so we're going to go ahead with surgery since it has grown…but it's not urgent". I asked what "urgent" meant to him, could i wait a couple years like we discussed before. He said he wouldn't wait more than a year. Well, that was the last week of January and, although we've been avoiding conception until we knew for sure (did not go back on the pill a we fully expected the green light for TTC), to my great surprise my period was late and i have several positive pregnancy tests. It is VERY early, probably 4 weeks. Ironically, we TTC my first child for a year and had quite a difficult time and now that we were not trying (avoiding), it has happened. We do feel incredibly blessed, just need to determine best course of action.

I have had a miscarriage (7 wks) and I suspect at least 2 chemical pregnancies over the past 3-4 years. I'm trying to be very realistic about the odds that this may or may not be a viable pregnancy, while at the same time preparing to make a decision that is best for this baby without compromising my health.

My neck dissection (left & central compartment) has been scheduled the week after next. I'm waiting a few days to re-test at home before I contact the Dr. to let them know. I had to have ovulated days earlier than my chart indicated (yes, have been keeping track of some basic things on fertility chart for few months). My surgeon told me that he will have to move nerves to get to the lymph nodes on the left side and I will experience weakness in my shoulder requiring physical therapy (he indicated mostly self-led). He also ordered a PET scan with contrast (small amount of radiation) the day before surgery to check that it has not spread to other areas (obviously that will have to wait until after birth).

I have not been able to sleep and am distressed/overwhelmed. Has anyone had a neck dissection while pregnant? How far along were you? Did you have shoulder weakness & if so how bad & how long until you gained back most of your strength)? Also, has anyone had a PET scan while breastfeeding? I appreciate any insight/experiences.

PrincessBritt17 · March 2014

@apa11 - I am sorry to hear about your situation and I know from experience how stressful this can be. I had a suspicious cyst on my left ovary that was found very early in my pregnancy and grew to a point that we had to make a decision to remove it or not. We were told that we had a 25 - 30% chance of miscarriage, but that without the surgery we risked a more serious situation later. We decided on the surgery and were thankful that we did when it came back that I had ovarian cancer. I was diagnosed at 17 weeks, started chemo at 20 weeks and delivered a healthy, but premature, baby girl at 30 weeks 6 days. There were a lot of decisions that we had to make that weighed heavily on my husband and I, but in the end we had to do what would keep me here for my family. For us everything has worked out, I just celebrated 2 years cancer free and my daughter is a healthy and spunky 2 year old, but you have to do what is best for you. Talk to your doctors and find out what they say. Also, get other opinions. We worked with a great team and consulted with a team at the Mayo clinic before deciding on our treatment plan. I did breastfeed my daughter for 10 months and after a scan would have to 'pump and dump' for 24 - 48 hours, but it was never an issue. Good luck to you and keep us posted!!

apa11 · March 2014

Thanks for sharing your experience, PrincessBritt17. I wouldn't have thought chemo would be an option while pregnant, but it's encouraging to know that necessary therapies can be done during pregnancy without harming baby.

I've notified the docs, they've already increased my thyroid replacement medication dose, and i'm waiting on a call to discuss their recommendations on course of action regarding surgery and testing that can be done.

LnghrnFan717 · March 2014

I'm glad you said you already talked to your doctor. I guess it comes down to whether it's dangerous for you to wait until after the baby is born to have your surgery or not. I had a friend who had a tumor on her ovary and waited until after the baby was born to have it removed because she was told she would probably lose her baby. They felt it was "safe enough" to wait the few extra months, but she knew it was risky. She and the baby were both fine in the end. So, it's definitely a conversation you, your husband and your doctor need to have. Praying it all works out!

haziedaze · March 2014

So stressful. It sounds like they said just a few months ago that they wouldn't wait more than a year. If this pregnancy sticks, then you would be able to have surgery just a little over that time frame. Sounds like the key issues will be monitoring the tumor closely and making sure nothing is affecting baby. If the tumor did start growing, maybe you would be induced a little earlier. Certainly a big surgery and recovery post partum is ideal, but at some point it sounds like there would never be a great time for it. As far as shoulder weakness, you'd probably do better dealing with it with a newborn/infant then a mobile fast toddler. Sorry I don't have an experience to share, but we're always happy to listen! Hoping your doctors can help you form a plan that will combat some of your worries!

PrincessBritt17 · March 2014

@apa11 - Actually, I am part of a group of women on Facebook who were all diagnosed with cancer during pregnancy and had surgeries as well as chemotherapy and all have happy, healthy babies! If you are on Facebook I would be happy to invite you to our group! I'm not sure that we have anyone currently in the group dealing with thyroid cancer, but it is still a great support system!!

PenguinM · April 2014

Hi! I know you posted this awhile ago, but I was just wondering how things are going and what your doctors have told you?

We just found out that I am about 5 weeks pregnant (also after going through IF to have my son 1.5 yrs ago), and I am having surgery in one week to remove my thyroid cancer.The plan was to follow up with RI-131 but this would (obviously) now have to wait until after pregnancy.

My husband is convinced that we should terminate- he is terrified that pregnancy will make any cancer cells that have spread beyond the mass that is being removed to grow and get worse. I am obviously worried about this as well, but all of my googling has pulled up conflicting opinions and (so far) the doctors we have spoken to don't really know what to tell us. I also had a chest CT-Scan last week before I knew I was pregnant, but no one seems concerned about that?!

Anyway, since we are experiencing similar things I was hoping you could tell me what your Dr's have told you, and let me know how you're doing!

Thanks!

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