I just had my second PET in 6 months since my latest treatment ended in February. A 1 cm low left axia lymph node had shown up. It has not changed in size but SUV is now 5.4, up from 2 three months ago.
The onclology,radiology and surgeon all concur it's needle biopsy time. I have not had good results with prior FNA as they have always come back negative the first time or two and did not show positive till much later when conditions were much worse. If it is negative, they will just watch for another 3 months until the next PET and I am not comfortable with this.
I have been battling since 2008 and I am running out of treatment options. I have had chemotherapy 3 times, radiation to both sides of my neck and clavicular area, re-irradiation, plus brachytherapy to my tongue.
My latest PET scan indicated all prior surgical areas to be fine! It seems I take care of one area and then it is fine.
I guess I am asking what others have done. My research on here inicated almost all others who have had a left armpit node did turn out to be positive, but there wasn't much posted in the way of treatnment and outcomes.
I am concerned with a few things:
First, needle tracking is what happened with my friend Caco's Father. Can I stir it up if it is encapsulated?
Also, since the size has not increased, but the SUV did, do I act immediately?
I was hoping a doctor would remove just that node as the biopsy instead of the needle biopsy, but they explained they would take many nodes instead of just this one, and I run the risk of lymphedema in my left arm and I am left hand dominant. My other arm is not as it was since the graft and artery was taken for my tongue surgery.
Experience tell me to expect follow up treatment of surgery, chemo, radiation or both if it comes back positive.
I guess it is time to realize now that this will no longer be considered curable.
I realize I am putting the cart before the horse, but I need to try and prepare a game plan of options.
You see, I just returned to work a month after an 8 month absence from the last treatment and I know they won't hold my job for me any longer if I go out again which equates to no more insurance. And I have a wonderful Fiance who just asked me to marry him no matter what! His health insurance will put us financially ruined and I still owe thousands of dollars from prior treatments even with hospital reductions.
We began making wedding plans. We chose a date in June and I have a second hand dress. I am trying to stay as possitive as possible. This is so unfair.....
Thank you for any advice or suggestions.
I have been having trouble posting this and also I was not able to update my signature. I had the total laryngectomy last November.
Cindy,
It is so difficult reading your post. You are absolutely right...it just isn't fair! I am so sorry to hear the latest news. I would gladly trade places with you if it was possible. I have lived a full life and have no regrets and nothing left I want to do. Unfortunately, it isn't quite so easy.
Try to not get ahead of yourself. Let things unfold before you change much in your life. In my case, cancer coming back has not been a worry although I now have multiple terminal diagnoses...all from radiation damage. I could sit around and wonder which one will take me first but I try to just keep on living.
My family doctors did not want me to have a FNAB for a lymph node under my chin that has been cooking for 2 years now. I can't do any more PET scans because of muscle twitching head to toe. I had 4 specimens removed and they all came back negative. I don't think I will be doing any more scans or biopsies at this point.
My thoughts and prayers for you.
Ed
Cindy, I did change your signature to show the 11/12 total larengectomy.
Im so very sorry you are going thru any of this. Its been a never ending battle of one thing after another for you.
Im hoping your docs can do surgery to remove several lymph nodes and that would be the end of this. I know you are concerned about future lymphedema, but the most important thing is to get rid of the cancer before it spreads. The surgeon would probably take many nodes, checking them as they go for cancer. After they get several clear ones they would stop removing them and leave the rest alone.
Im still amazed at your return to work without being able to speak. Your drive and determination has gotten you this far. If anyone can get thru another procedure its you.
Best wishes with everything!!!
Your fianc� sure knows the meaning of "in sickness and in health." You got a good one there! : ) Praying all the best wishes for you.
hi cindy, your fiance certainly knows the meaning of "in sickness and in health." you got a good one there! praying all the best wishes for you.
Hi Cindy,
You've been thru way too much already, and I agree this just isn't fair.
The node may not be cancer, but you know the only way to confirm or rule out is a biopsy. I understand your concerns and it is a tough decision to make. Perhaps seek out another opinion at a different hospital?
IF it is cancer, it is probably better to remove it now than waiting.
I've been to a number of different doctors and hospitals, and at times it was suggested that I wait and see and retest in 3 months. That was really tough, but I did it and the Pet Scan showed there was nothing. I truly hope that is what happens in your case.
Your finance sounds like a gem. Use him for support and discuss your options with him. Your OCF family is here for you also.
Keeping you in my thoughts and prayers. (((HUGS)))
Hi Cindy,
Years ago I had 3 golf ball sized lymph nodes removed from my left armpit. Short story is they said I had lymphoma. One biopsy in my clavicle area came back negative. A few months later I still didn't feel well so they did more Cts only to have it look worse. Did a PET and said it was stage IV so they removed those nodes. They all came back negative too. After that I said leave me alone! Anyway, all that to say I do have some lymphedema in my left arm, but it's not too bad and only flares up now and then.
Good luck with this.
Kathy
Thank you everyone.
I had a diagnostic mammography and ultrasound and it was determined to not be breast cancer related.
It appears to me the left side is the path this has chosen to drain as I had a node at the left clavicular area that we radiated. Nothing shows on the PET, it is gone now.
I am working with my CCC team to try and convince them to remove this and biopsy instead of needle biopsy.
With the way my body has reacted to this cancer I have had too many false negatives and want to be over and done with this while it is still small and insignificant.
I think after awhile we need to reflect and listen to what our bodies and intuitions tell us even though we have wonderful doctors.
I still welcome any other thoughts or suggestions from anyone.
The saga continues.....
So far good news. I think I would rather do a FNAB first, being less invasive, and then a surgical biopsy if inconclusive. Each one's experience is different, and I had 6 FNAB, which were accurate. The risk is low, and adverse spread is rare, and cases that were, were with large core needle biopsy. Good luck.
Cindy push for what you feel works for you.... Hugs
Cindy,
I agree with Cheryl - do what feels right to you. You've been through so much in the past few years and that stress from constant worry isn't good.
Did your doctors say why they don't want to do the surgical biopsy?
I'm glad the mammography came back OK!
Cindy721, I am sorry to hear this news. maybe you will be lucky and the armpit will come back neg. I just today (9-18-13) found out that my RSCC. surgery came back with failed margins. so I know how you feel about the fear and subsequent knowledge of what you don't want to know. I sincerely hope that you will be given what you deserve. And not this terrible nasty evil condition.
"May we stroll together or stumble and fall all alone"
I am scheduled for surgery to remove this one node for biopsy October 11. I pushed for it and the team was in agreement based upon my history. It will be minimally invasive and they can do a full biopsy. The doctor explained it could be head and neck mets, a weird breast cancer, lymphoma or nothing at all. Sunderwood, I had failed margins previously and I am holding my own after treatment, so don't give give up the ship!
Yeah Cindy - I am glad you stuck to your guns...
best of luck.. It should be a quick recovery. Hopefully it's nothing and all you'll be is relieved and one node lighter.
hugs!
Well, I had two axillary nodes removed and both came back SCC mets. PET on Tuesday, decision time Thursday. This will be number 5 for me. The doctor commended me for sticking to my guns and insisting the excisional biopsy be done. Since this hasn't been there that long there was a good chance the FNA B would have been another false negative. You must listen to your instincts!
Cindy,
I'm glad you insisted on the biopsy - women's instincts can't be beat! But I was sure hoping you were wrong. Number 5 - this really stinks!
When was your last PET? I know they told me that sooner than 3 months you can run the risk of a false positive.
Praying for you!!
Oh Cindy, I am so sorry to read this. Life is just not fair.
But, keep placing one foot after the other. Take one day at a time .
Get the PET done. Get the treatment plan and push on. You can do this. Take a deep breath. You can do this.
Keeping you in my thoughts and prayers,
Tammy
Im very sorry (and surprised) about the latest recurrence!!! Hopefully the surgery you just had took it all out and you can move on.
You know where to find me if you need anything. Keeping you in my prayers always!
So glad you stuck to your guns. Hopefully margins are clear and any other nodes have been removed and are clean! Hugs
Cindy, your perseverance is inspirational! You teach us all how to make the best out of a challenging situation: Plan ahead, ask lots of questions, continue to pursue your dreams and don't put anything on hold.
Are you saying that your fiancee's health insurance won't cover you at all?
So glad you stuck to our guns! Most of the time our intuitions are right, Sorry about this recurrence. Youve definitely been through a lot. Prayers for you.
Surgery scheduled Nov 5 to remove the rest of the nodes followed by radiation and a chemo cocktail that will last 4 months. The doctor said the recurrence in this area is rare, but can occur. He has only personally known of 2 cases, mine included. Need MRI for shadow on the PET on my liver. Although the doctor said SSC to the liver is so very rare, now I have to wait again for the outcome. If it comes back positive, all surgeries and bets are off at that point.
I wouldn't rely specifically on an MRI - since it can pick up other things not cancerous but it's a good place to start hoping it's all clear!
Well, I had axillary node surgery and tally was 4 out of 15 nodes( including first biopsy) along with a piece of tissue that appeared to be where the extra capsular spread was.
I will be heading into my 4th time of chemo and radiation, but since it is not to my head and neck it should not be as devastating.(My hope.)
I have joined the ranks of metastasized cancer now.
They are hopeful that since we caught it early in the lymphs and it was too small to show on any scans that maybe we can put up a roadblock.
My Oncologist submitted for molecular testing. I will make a separate post but don't know too much about it, but I sure will learn so I can talk about it next week with my Oncologist.
If anyone has any information on the subject I sure would be interested to hear from you.
Thanks much!
Sucks that your back into the rads and chemo, so glad it hasn't spread beyond where you found it - thank god you stuck to your guns and pushed to have it removed!!!!!!!!
I wonder if the molecular testing will determine what it responds best to. It's like a personalized form of chemo! This may be what cocoa pops dad had. I think you're right regarding the radiation. Not sure about the chemo (it depends on what they are giving you - but I think the rads will be easier. My father in law is going through 5 weeks to his lower esophagus right now. He just started week 4 and his only pain is when eating as it's going down. I think since this isn't in a place where you have any external irritation (like food in your mouth etc) it should be much better. The only concern would be skin and burning. But you've already had it once so hopefully you know how your skin reacts and can plan for it.
Hugs... We're here...