Loading...

Deputymom's Message Board Messages

Loading...
Showing 1 - 10 of 7

Page 1 of 1

So I just got a call from my oncologist. My scan is being postponed because Blue Cross won't approve it until I am at least 12 weeks past my last radiation treatment.  I know there are concerns about false positives when it is done sooner but my doctor wanted it done at 8 weeks. I am upset because my ENT felt a little something in my neck where the malignant lymph node was and I am afraid it might be live cancer remaining. I know it could be dead tissue or scar tissue but I am still stressing. I have to remember that this is a marathon race and not a sprint, but it's hard to be ok with the insurance company making decisions and not the medical professionals.  I checked my calendar and I will be scheduling my scan in exactly 12 weeks and 1day!!!  I am interested to know how long most people wait for their first scan and if anyone had gotten false positives. I can't thank everyone enough for sharing. 

I can't imagine how stressful this situation must be for you both. I have my first scan in 3 weeks and am losing sleep over it already. I know I want an answer as to whether the treatment was effective and what my next steps will be. I am sorry you are going through such a difficult dilemma...hopefully you will find the answers you need to move forward. Praying for good news for your husband.

Susan,

I have never smoked and almost never drink alcohol unless it's a very special occasion...I probably average two or three drinks a year at most.  My lymph node biopsy came back negative for HPV and my oncologist thought it was a false negative, too!  I was lucky because O only had to get my bottom wisdom teeth extracted before treatment. In addition to the radiation O had 3 rounds of chemo. The two weeks after treatment ended were the worst days of my life and if it weren't for my family O might have given in to the illness and depression cut that dark time.  I didn't eat anything by !mouth for 2 1\2 months so the peg tube was vital for me...I kept trying to drink water because I had been warned about losing my "swallow". I lost about 20% of my body weight but I was "robust" (my doctor's diplomatic way of saying FAT) so although I could afford to lose weight I also lost muscle. I have been able to maintain my weight eating by mouth and haven't used the feeding tube for about three weeks now. I am hoping that if my pet scan is clear to get rid of my peg and port soon.  I know I am very lucky in some ways. I hope my saliva returns at least a little and my taste buds improve.  I also have problems with my hearing...sounds are amplified and everything seems super loud.  The ENT says everything will improve with time and I pray he is right.  I appreciate you taking the time to reassure me about the neck surgery...I hope it isn't necessary but I will just have to wait  and see. It is especially encouraging to know that you are an eight year survivor...thanks again for sharing your story with me...you have helped me more than you will ever know...take care ?

Susan,

Thank you for your words of encouragement. The only surgery I have had so far was a biopsy...surgeon removed my "2nd largest" suspicious node. When he saw the node he decided to leave everything else as is and referred me to an oncologist immediately after he got the pathology report. So I had a pet scan and no primary found so I had a triple endoscopy and despite the ENT taking samples for biopsy no cancer found except my lymph nodes.  So I had 33 radiation treatments (I think they did my entire neck because they didn't have a primary) and 3 "heavy duty" rounds of cisplatin.  So no surgery unless the peg scan results aren't what I hope for.  I know it's possible to have false positives and my oncologist said he's good at knowing the difference so...I really appreciate your perspective on the scan anxiety...you have been where I am going and and I can't thank you enough for sharing how you cope...I will keep you posted! Bless you!  

I had multiple nodes which showed up on pet scan but the one I could feel was 2.2 x 2.3 cm...

I had pain in the right side of my neck almost like I "slept wrong" on it so after a few weeks I went to my primary care physician who sent me to have an ultrasound of my carotid artery "just in case". The ultrasound showed nodules on my thyroid gland which I had a fine needle biopsy for in March 2018. After weeks of worry I finally was told it wasn't  cancer. I still felt the enlarged lymph node on that side but was assured it was nothing. It got larger that call so I went to 2 other doctors who said it was nothing to worry about.  Then in February 2019 I happened to accompany my husband to his doctor and the young resident he was remembered me and I told her my node was still there. She said maybe you should see a surgeon. I went the next week. Had ultrasound, then CT scan, then biopsy and finally diagnosed...couldn't find primary site. Had pet scan and thankfully the cancer was still regional in head and neck although now on both sides. Had peg tube and chemo port surgery, had radiation mask made and treatment began in April. My advice to anyone is if you think something is wrong don't just accept it... You know yourself better than any doctor. I have to say that once diagnosed I have received excellent care. But it has been a very difficult time and I can't help but worry that my chances would have been better if I knew sooner. I feel like that year have cancer an advantage...but since I don't have a time machine, I am just trying to move ahead and be strong. Maybe you should ask about a biopsy if the node doesn't go away...good luck and be the "squeaky wheel" if you have to!

Hi. I just completed 33 rads and 3 rounds of chemo for stage4a squamous cell carcinoma in my neck. I was misdiagnosed for over a year before I finally got someone to pay attention to my enlarged lymph nodes. Rough treatment but I made it through. Thank goodness for the peg tube. I am 4 weeks out from treatment and eating and drinking by mouth. Terrible dry mouth and not much taste from the food but at least no more nausea and things don't taste spoiled any more. My neck still feels foreign and weird. I saw my ENT and he said he could feel one spot which might be scar tissue from a lymph node but the rest of my neck felt clear. I have my first peg scan in 4 weeks and I am so worried about it. I am concerned that I might need a neck dissection and honestly I am so sick and tired of being sick. I was wondering if anyone else had "leftover scar tissue" from lymph nodes after treatment? This is my first post but this forum has been so helpful to me throughout my ordeal...I welcome any info or advice. Thanks!

Showing 1 - 10 of 7

Page 1 of 1

Loading...

About Deputymom

Deputymom has not shared any information about themselves. Send them a message to tell them you'd like to find out more about them or add them as a friend.

We care about your feedback. Let us know how we can improve your CancerCompass experience.