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Another Reccurence

sunnyaz
Posts: 582
Joined: Oct 2010

I just found out that the surgeon missed a large lymph node from my last surgery in June. Changing surgeons this time. This will be my third surgery. Just not sure how I will get through this again. RAI was two months ago and now another surgery.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

Mayo Clinic perfoms alcohol ablations for some lymph nodes on thyroid cancer patients rather than surgery. I am not sure what criteria are used to determine if that option is appropriate for a given patient. http://www.mayoclinic.org/thyroid-cancer/treatment.html. when i seemed to have an odd node last winter they considered doing this for me (turned out it was fine and i didn't need any treatment so, unfortunately, i can't relay how it feels or how well it works). best to you - hang in there.
e

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks! I will ask my new surgeon what he knows about it. If it's an option I would like to consider it. I am going to the U of A Cancer Center in Tucson on the 23rd of this month to meet "the best of the best" in hopes of having at least minimally invasive surgery since this is my third. I already have a lot of scar tissue so it's going to be a more difficult process. I am trying to hang in there but it's getting tough. I thought I was done with this last November. I have had two surgeries since then and I just don't know how much more I can take.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

I had surgery, RAI and external radiation last year and thought I would 'cruise' for a while but have not been so fortunate. Surgery is tough though. I hope they can give you an option.

AliceP
Posts: 32
Joined: May 2010

I have had 4 surgeries for my thyroid cancer (Hurthle cell). It does get trickier with all the scar tissue. I hope you have another option, but if surgery is the answer make sure you have a great surgeon. Best of luck to you.

sunnyaz
Posts: 582
Joined: Oct 2010

I am hanging in there. Just very tired all the time. I have had many people ask me if I am going to take legal action on this. I am so exhausted I don't even want to think about it. I still can't believe the surgeon missed the Lymph node that was seen on the sonogram and biopsied back in May. He took out thirty-four nodes in June, three were cancerous and he missed the largest one that he originally went in to remove. Anyone have any thoughts on this or experience something similar? Am I just really unlucky or does this happen a lot?

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

I was reading your post and I'm going through a similar situation. Last October I was diagnosed with Hurhtle Cell Carcinoma and had two surgeries along with RAI. In May I had a WBS and everything came back clear. I just recently had an ultrasound on my neck, and found two masses on each side of the neck. The doctors said there is a possibility of recurrence and I'm scared out of my mind. I dont know if my surgeon paid much attention to my lymph nodes when he went in the second time. I just hope that if this cancer, that they are able to get again. I wish you the very best in your journey, and know that you are not alone. :)

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry to hear about your recurrence. It's very strange but I have to tell you that I am intrigued by the 06 at the end of your screen name. Is there a reason you chose it? This number has been following me for years. Every time I look at a clock and everywhere I see numbers it comes up. So when I read your post of course; there it is. I have stopped trying to figure out what it means because it was driving me crazy for a while.

Anyway, mine is a 7mm Lymph node with a few smaller nodes around it. Thankfully they are all on one side. I already have a six inch scar on the right side of my neck from my ear to the opposite side of my neck with lots of nerve damage. I am not sure if I will ever get feeling back. I just hope the scarring isn't going to be much worse after the next surgery. It's kind of unsightly. I work for a doctor and some of my patients ask, "what happened to your neck?" Most of them are elderly and it seems that some loose their scruples as they get older. My doc heard one of them ask one day and made a comment that he couldn't believe how rude people can be. I know that the scarring should be the least of my worries. Seems kind of petty, but I can't help it.

I hope all turns out well for you. I hope you will keep me posted.

SunnyAZ

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

I hope you are doing well. In response to your question, the number 6 represents my birthday( which happened days ago). It's kind of funny, but that was the day that I had my second surgery(which happened to be on my birthday). My scar is the center of my neck. And it too, did not heal properly. It has been difficult putting up with people's comments and glares,but I get creative and tell people I was stabbed. lol You have to have a sense of humor when it comes to dealing with all of this.Believe it or not, prior to all of this, I did not have a single scar on my body. I remember after my first surgery I couldnt even look in front of the mirror. I would have to say that when it came close to the second surgery, is when I saw it for the first time. I remember standing in front of the mirror crying like a baby. Even to this day, it is difficult to look at my scar. I've never been a huge fan of scarves, but you better believe I have one in several colors. If you were to ask me over a year ago where my thyroid was located, I would not be able to tell you. It's funny how time has passed and now I feel like i'm an expert. I'm glad that I have followed my instincts because the team of 4 doctors that I have been working with over the past year have let me down time after time. It is stressful having to chase and put pressure on doctors just to schedule an appointment. I look forward to going to MD Anderson and getting answers.

veronica57
Posts: 98
Joined: May 2010

I know what you mean. If you don't follow your instincts and ask questions, we wouldn't know anything. The doctors are full of it. My last appointment with my endo was in April. He hasn't made me another appointment since. My onco is treating me with Nexevar for mets to my lungs. But he doesn't check my tg levels and I'm lucky if I get an appointment with him every other month. Most of the time, I see the RN. He checks my blood work every two weeks.

Now, the imaging center tells me that I have multiple cysts in my breast. But it's nothing to worry about. They're sending the report to my pcp and it's up to him to decide if he wants to test them to see if they're benign or cancerous. My mother had breast cancer twice, and my aunt(her sister)as well. It's worrying me. I know they're not going to call me back to let me know anything. Anytime I want to find out something, I have to keep calling them.

sunnyaz
Posts: 582
Joined: Oct 2010

It's up to us to be our own advocates. If I had not called my Endocrinologist I wouldn't know that the cancer was back. Even after he told me he had concerns about the 5 mm node not showing up in pathology, he didn't do a follow up sono. He should have done a Sono right then and there, which was about two weeks after my second surgery. Who knows when I would have figured out the cancer was back if it hadn't been for my own sixth sense and intuition. Always ask at each appointment when you will need to following up and what is the next step. Make the next appointment at check out before you leave the office. I work as an Assistant to two Physicians in a Geriatric/Family practice and I make sure my patients know when and if they are to follow up. Even if it is something as simple as a cold or bronchitis. I ask them if they have any questions before they leave and let them know that they should call me if anything worsens or they have questions after they leave. EVERY office should be doing this. The majority of the health care industry sucks!
SunnyAZ

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

I'm here at the doctor's office awaiting results from WBS. Wish me luck!

sunnyaz
Posts: 582
Joined: Oct 2010

Hope all went well. Just saw my Oncologist this morning. Looks like I might have metastasis to the left side now as well as the right. Doing a FNA next Friday to see if it's cancer. Couldn't tell by the Sonogram. By the way, I love the pic.
SunnyAZ

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

I received the news that activity was found on the right side of my neck. The doctor told me that is very likely it is cancer(again).I too have a biopsy next week to pretty much confirm that it is cancer. I've also been referred to MD Anderson because of the type of cancer that it is. I've had you in prayers and I am confident that we will get through this:)
Marybelle

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Marybelle,
Are we twins? This is so weird! I had such a great experience at the UMC Cancer Center. Seems like everyone who works there is so happy and helpful. I swear they were singing Zippity Do Dah out of their a__holes. I feel so blessed to have been put in their care. I have NEVER been treated so well by a Medical facility. You are in my prayers too. I am doing the Relay For Life for the American Cancer Society here in my home town on April 2nd. I am hoping to raise a lot of money for cancer research. I also agreed to let them take cells from my next surgery to use for cancer research. UMC has an awesome Cancer center. Keep me updated and have a fantastic Thanksgiving.
SunnyAZ
Julie

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

Hi Julie,
I hope all went well with your biopsy. I would have responded sooner but the unexpected happened;my brother died the same day I had my biopsy( in the same hospital!). Dealing with cancer is draining much less having to deal with the death of my brother.I take one day at a time hoping that he will help me get through this whole ordeal. I find out my results tomorrow from my biopsy. Wish me luck! I'll keep you in my prayers. :)

Marybelle

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Marybelle,
I am so sorry to hear about your brother. I hope he went peacefully. Was this unexpected? Did he have cancer too? This is such a difficult time for you and I wish there was something I could do to help. I will pray and pray some more.

I hope for the best with your biopsy. I got a call from my doctor today. The left side node is negative. He only will need to deal with the right side nodes. Ten more days till my surgery. I can't believe how fast time is moving. Please let me know after you find out about your biopsy. I will check posts as soon as I get home from work tomorrow.
God Bless,
Julie

mbelle06's picture
mbelle06
Posts: 7
Joined: Nov 2009

I hope my story reaches those who are dealing with thyroid cancer and/ or those who will deal with thyroid cancer. I went in for a routine ultrasound and found out that I had three tumors that showed up in my lymph nodes. I was devastated. I wondered how any of this could be happening. My doctor had decided to set me up for the oh so wonderful Whole Body Scan. I received the results from doctor and he stated that their was " activity" on the right side of my neck and it was cancer. I remember sitting in the chair biting my lip to prevent me from breaking down in the office. I had been through this once before and could not imagine through this again.I remember walking to my car and wiping a few drops of blood from my lip and broke down. I cant remember the car ride home, but I do recall asking GOD, " Why me?". I spent several days in the "Anger" stage until my next appointment(which was my biopsy). Then the unimaginable happens. My brother dies! At this point in time, I dont remember how I stayed sane. Maybe I wasnt. I waited a week before I got my results and to my surprise, the results came back negative. The doctor looked baffled. By then, he had already scheduled me at MD Anderson because he said that I needed a more aggressive approach to fighting this cancer. I stared at him and must have given him the "What the f***?" look. His demeanor had changed and told me that I needed to go because it may not have been accurate results. I had been to hell and back two weeks prior, and now I dont have cancer? OR do I? I headed off to MD Anderson where they explained to me that I had follicular carcinoma, not hurthle cell like my doctor had originally told me. They also told me that I inflammation in my lymph nodes and that I did not have tumors with cancer. I dont think I had ever walked so fast out of a hospital! I knew my oncologist wasnt the sharpest tool in the shed, but I should have known better. This is my life! Im glad I went to get a second opinion because they were already setting me up with a surgeon to do another biopsy. If it meant getting a clean bill of health, it was all worth it. I have learned to be your own advocate because unfortunately, no one else will.

veronica57
Posts: 98
Joined: May 2010

Legal action has been on my mind a couple of times. But like you, I'm so exausted and I'm simply praying that something will help me. Just reading your situation though, makes me wonder if the surgeon left something in my neck and this is why the cancer is still growing into my lungs. I remember my daughter telling me that the surgeon said, there was still another nodule attached to my vocal cord. But a special surgeon would have to remove it. But I mentioned it before, and the doctor denied it. I'm thinking of seeing a new endo to make sure nothing else is still in my neck.

I know you don't want to go through another surgery. But it's probably best, so that it won't spread. Stay strong and God bless.

Veronica

sunnyaz
Posts: 582
Joined: Oct 2010

Yep, I just don't have the energy to think about legal action at this point either. I think my husband is going to have to cover most of that. I am going into surgery tomorrow. Still don't have a time yet. I have to call in the morning to get my OR slot. Wish me luck and keep me in your prayers.

Julie-SunnyAZ

veronica57
Posts: 98
Joined: May 2010

I am wishing you luck and my prayers are with you.
Veronica

BellsAngel69
Posts: 102
Joined: Dec 2009

I've also had four surguries for my hurthle cell cancer, the last reocurrence went to my liver. I'd love to exchange stories with you Alice. It sounds like we've been down the same road. You can contact me here by becoming my friend, or via email at:

rorick@frontiernet.net

If anyone else would like to talk more personal please feel free to contact me.

Reoccurences are tough. I'm hoping my next blood test will show I'm still in remission. Al any of us can do is be strong, get through the rough spots and stay positive. I know it gets hard, believe me, I've had my times of doubt, but you can't let it get the best of you. Keep your head up!! You will prevail!

sunnyaz
Posts: 582
Joined: Oct 2010

I am home from the hospital and all went well. Three hours in the OR and he found the node plus a few more that were hiding behind it. He thinks he got it all. I will go back for follow up on the 28th and then four to six weeks later more RAI to kill any microscopic cells that may still be present. I am very tired and sore but happy to be alive and home with my family and my best buddy, my Parrot named Willie Q. Cazoo. When I arrived home yesterday and opened the truck door, he saw me through the window and I heard him scream, "Mom's Home!" Made me so happy. He hasn't stopped talking to me since I got home. Thanks to everyone for your powerful prayers and thoughts. This board has been so good for me. I hope I have been able to help others as well.

veronica57
Posts: 98
Joined: May 2010

I'm glad that it all went well. The parrot is cute. Happy Holidays and best wishes.

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks, this was the longest but most successful surgery so far. My bird really is my buddy. My daughter and my husband talked me into getting him and it turns out now he likes me best but will tolerate my husband. He is very conversational and surprisingly cognitive. He has a vocabulary of over 100 or more words including full sentences, questions and statements. Parrots are compared to dolphins, monkeys and whales when it comes to intelligence levels. I belong to a bird club and love to chat with other folks about their birds. It's like having a kid that never grows up and leaves you. They can live anywhere from 30 to 100 years depending on the type of Parrot so most are put into your Living Will.

Happy Holidays to you too!
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks, this was the longest but most successful surgery so far. My bird really is my buddy. My daughter and my husband talked me into getting him and it turns out now he likes me best but will tolerate my husband. He is very conversational and surprisingly cognitive. He has a vocabulary of over 100 or more words including full sentences, questions and statements. Parrots are compared to dolphins, monkeys and whales when it comes to intelligence levels. I belong to a bird club and love to chat with other folks about their birds. It's like having a kid that never grows up and leaves you. They can live anywhere from 30 to 100 years depending on the type of Parrot so most are put into your Living Will.

Happy Holidays to you too!
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Everyone,
I saw my Oncologist and the pathology report revealed 3 out of 10 nodes removed were cancerous. I am scheduled for another RAI (2nd) treatment next month. I am scared however. The Oncologist wants me to go Hypo before my Treatment and I just don't think I can handle it. Last time I had Thyrogen injections and I didn't suffer very much. I am going tomorrow to consult with my Endocrinologist on this. I really don't want to go Hypo. I can't afford that much time off of work and I am already a nut case to begin with. Did anyone go off med's four weeks before their RAI and not go insane? How did you feel? I fear not only insanity but going into the poor house to boot.
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

My Tg levels are undetectable! I am also able to do Thyrogen injections instead of going hypo before my RAI. Hopefully this is the last one. I am so grateful for God and good doctors. Thanks to everyone for your support on this site.
Julie

veronica57
Posts: 98
Joined: May 2010

I hope you had a great Christmas. Unfortunately, I got sick Christmas night after everyone left my house. I ended up in the hospital and just came home yesterday evening. Glad to be home for the New Years.

I went without meds, the first time that I had RAI. It made me really tired and I often had to get in bed and rest. The next time, I had the Thyrogen injections also. I still got tired, and after all the preparation, I found out that the pill they gave me wasn't even the real thing. It was a test pill. I'm grateful for God too. But good doctors here are hard to find. Happy New Year.

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry to hear that you got sick. What happened? I hope it's not serious. So glad you are home and doing better. Wishing you the best the New Year has to offer. May we all be blessed and healthy in the upcoming year.
God Bless,
Julie

veronica57
Posts: 98
Joined: May 2010

Happy New Year and thank you. I'm glad to be home. Chemo unfortunately caused my white blood count to drop and I contacted a bacterial infection. Because my blood sugar had dropped so low, it sent me into a shivering cold spell. When I got to the ER, they found that I had a fever and that my blood count was extremely low. They admitted me and put me under neutrapenic precautions. It was touch and go for a while. My blood sugar kept dropping and my blood pressure as well. Despite the fact that I am diabetic, they had to take me off of low calorie diet and put me on a regular diet. Things began to look up and I came home on Thursday. Praise God, I toasted the New Year in with my daughter and my grandchildren. I'm wishing the best for you too. I hope this will be a better year for us all as well.
Veronica

candyland
Posts: 5
Joined: Jan 2011

Im new to this discussion board but feel better knowing there are poeple out there going thru what i am going thru.

I have had 2 surgeries, 2 RAI and radiation for 6 weeks 5 days a week and I still cant get rid of this thyroid cancer. It is now on my lungs.

I wish everyday I never went to the first surgeon who supposedly removed all the thyroid. Not the case. Second time around my endo sent me to the Mayo Clinic in Jax. Wonderful place. I am soooo hoping they can heal me.

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry you are having to go through this. Lungs mets really suck. You are in good hands at the Mayo Clinic. I have had three surgeries and going on my second RAI on Friday at more than double the dose of the first. My first surgeon messed up my second surgery which led to the third and now another RAI. I am just so ticked off. I am also a bit perturbed with one of my Endocrinologists. He decided not to do RAI after my first surgery, the Total Thyroidectomy. Had we done that I am not sure I would have had to go through the rest of it. I am B-RAF positive and he didn't test me for the mutation gene until after my second surgery. I have a friend that had a Total Thyroidectomy and the RAI immediately after and never had a recurrence. Believe it or not we have the same Endocrinologist. I am not sure why he didn't opt to give me the RAI after my Thyroidectomy but he did with her. We had almost identical cases. He said that the side effects of RAI are worse than the benefits. Not so in my case and as I have read from the boards, not in most cases. Even my Nuclear medicine doctor and Oncologist/Endocrinologist/Surgeon were scratching his head on that one.

Take care and hang in there. I always tell cancer patients to live each day without regret and as if it were your last. Not that it is going to be but at least you won't spend the rest of your life worrying.

God Bless,
Julie-SunnyAZ

Godzdaughter74
Posts: 4
Joined: Jan 2011

Julie,

How are you doing and are you still in isolation?

I will be doing my first RAI at the beginning of next month. I am really scared because of not being able to have any human contact for 7 days. This has really turned my life unside down.

Julie

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks for writing. I am out of Isolation. This is day four. My doctor said that I am fairly safe after three days, but can't sleep with my husband, or have extended periods of time with minors or pregnant women until seven days. I am staying home from work until Monday. I work with a pregnant woman at the doctors office and we have some pediatric patients. This is my second time doing RAI and it really isn't as bad as it seems. I was really scared the first time too, but now I am more comfortable with it and sort of just take it in stride.

The time will go by pretty fast. Remember to drink lots of fluids, keep salivating and wee, wee, wee all day (and night) long. I worked out in my bedroom to help sweat out some of the radiation as well. It felt good but there is a slight strange odor from it. Air out the room if you do sweat. Open the windows and let some light in to avoid darkness and ward of depression. Keep positive and think happy thoughts, do some meditation, prayer and feed yourself positive healing thoughts. Say to yourself that this is only a short period of time in comparison to the rest of a happy healthy life.

You can have human contact, just not physical. Some doctors go way overboard with that in order to save themselves from a lawsuit. Walking past your family isn't going to harm them. My doc says, two arms lengths away for short periods of time is fine. I watched a movie with my husband on the second night, I just pushed my chair about ten feet away from his. I wore rubber gloves but made sure that I washed my hands every time I took them off because of the sweat that forms when you wear them. I kept an isolation garbage bag in my bathroom and deposited anything I ate from and all of my gloves in it. This will keep the contamination contained. Put your remote controls from TV and or stereo's in a plastic bag to avoid contaminating them. Just throw the bags away after the isolation period in your contamination bag, tie it up and put it in the garbage outside. It won't even be radiated by the time it hits the landfill. Half life is about three to four days.

Don't be scared. Look at it as a little "me time" vacation. Get everything ready to do a pedicure, manicure, or whatever makes you happy. I enjoyed chatting on line with my friends on facebook. They gave me so much encouragement and laughter during those days. I just wiped my laptop down really well this morning and brought it back into the office so that my daughter can use it again too. I will probably continue to wipe downs items here and there and constantly wash my hands.

The most caution is in your bathroom and bedroom. Keep that area clear of other humans and animals for the restriction period. Then after the isolation clean with Clorox wipes, (deposit in your contaminated bag) wash your clothes on a double wash cycle and after you finish your laundry, do an empty wash to clean out the washer before any other laundry is done by others in your household. Include any towels you used as well. Showers are really the least concern. Most of the radiation is washed away with the water. I just wipe down the walls and floor after the isolation and rinse well. The toilet should be flushed at least twice after you go during the first three to four days. Depending on how old your toilet is and how well it flushes. I have a very powerful flush so I only flushed twice after each use and wiped with Clorox wipes once per day for my own benefit.

You will be fine and so will your family. Nothing is ever as bad as we think it is going to be. Try to find some positives. I bet when it's all over you will realize that you were scared of simply "the unknown". That can be pretty scary though, so I certainly don't discount that. Thousands of people go through this each year and are cured of our cancer. You can do this and you will survive! Please don't hesitate to write if you need support. I am here for you.

Julie-SunnyAZ

puppetmn
Posts: 4
Joined: Mar 2011

I've had 3 surgeries, 2 RAI and and 33 treatments of External Beam... all since 2007. just had a ct scan, in Feb. following a wb thyrogen scan... and have found that now it is showing up in my lungs. just curious how you got to the mayo and what are they doing for you?

miladyx
Posts: 85
Joined: May 2009

... Is your tg? Has it been increasing?

puppetmn
Posts: 4
Joined: Mar 2011

Yes it is -- it has shot up to over 500 in the last 6 months..from a low about 10

kathy853
Posts: 1
Joined: Mar 2011

I had a total thyroidectomy plus parathyroid removal in 09/09 plus RAI in 11/09 - a few weeks back I was told I have 3 nodules in my lungs now - the "tall cells" found a home in my chest. Now its a wait and see how fast and how big they grow before my next step. I hate waiting and to be told not to think about it is a joke!

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry to hear you are going through this. It's never easy to wait and it's all you can think about from the time you wake up until you go to bed. I have been there. The best way to battle the war in your mind is to try to stay active and positive. Tell yourself that you will not let this get you. You will fight and win. Don't stop your life. Make plans to have fun and enjoy yourself. This is just another challenge that will make you stronger in the end. My mom always told me that worry won't help any situation. She was right. I have never heard of worry or negative thought helping anyone. I know it's hard but all you can do is try. You will be in my prayers with everyone else on this board. I know that my prayers are powerful. Keep us posted and please don't be afraid to vent. That's why we are all here, to help each other and pull each other through this.
Blessings,
Julie-SunnyAZ

boitchik
Posts: 10
Joined: Feb 2011

Sunny's response to you warrants reinforcing. People have varying emotional and control processes and so abilities to handle this kind of thing vary. But you do have to maintain your activities, family life, friendships etc. I also await a scan under circumstances similar to yours. It ain't easy.

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