Newly diagnosed and new to CSN
Greetings all,
I had what was thought to be a granuloma on my right vocal cord. A biopsy had now labelled it "Invasive keratinizing squamous cell carcinoma" . The lab report also says, " The tumor is positive for p63 confirming squamous cell. P16 is negative." Being diagnosed just yesterday, I don't know what any of that means ... yet.
I have a first appointment with the radiologist this coming Friday. I don't know when/how staging is done. In any case I haven't yet been told what stage I'm in. I am under the impression that we "caught it early".
In my one day of research I've read that surgery is the first option when possible. I've also read that radiation treatment can only be done once. Can anybody elaborate on this? Wouldn't it be wise to pursue the surgery option if at all possible? And what are the downside of surgery? What would make surgery not possible?
I celebrated my 77th birthday 2 days before diagnosis. It's not like I have a whole life ahead of me. I haven't yet completely discarded the idea of doing nothing.
As you can see I am in the early throes of decision making, but I need more information.
Thanks in advance for any info you can provide to guide my decision process
All the best,
Jim Singelis
Comments
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Hello, Jim sorry you have to be here but you can get support & help here so it's a good place. After reading your post I would have to say I would need more info such as how big the cancer is, how invasive it is. Such as the size and staging you mentioned. These days they approach cancer in several ways. Surgery is an option depending on how extensive an operation it would be. If they are operating on or around vocal cords I think they have to be careful. If it is small they may do surgery and follow up with radiation. Sometimes they use all 3, surgery, radiation, chemotherapy. I would say wait to see your radiologist and see what they are planni9ng as your treatment course. Then we may be able to comment more. Could you let us know where you are getting treated for cancer at? Is it a major cancer center? If not and there is one close to you , you may want to consider it. Considering your age how is your health as that would be a factor if they need to do a very extensive treatment? Once you get your treatment plan let us know and we can give a better opinion. Also, consider getting a second opinion as hospitals and treatment centers these days can send your scans to other centers for you, and don't mind you getting a second opinion. Also these days I think treatment leans more to radiation and chemo but surgery is an option also.
OK, Jim I just threw some ideas out there, and as you say at the end of your post "As you can see I am in the early throes of decision making, but I need more information." Understandable and more info would be a great help.
If you think of other questions in the meantime let us know.
Wishing you the best=Take care-God Bless-Russ
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Good Afternoon JimSingelis and a big welcome from the H&N forum. Well, as much I don’t want to say it. Your story matches many on here and you most likely do have caner but, how bad it is based on Staging is still unknown to you. I will hop on the early-cancer-detection-train with you and say (based on your impression) “it is most likely “not too bad” as it appears that you caught it earl”. AND it is well known around these parts that early detection of H&N cancer can be a true blessing.
I had Stage Iva, BOT, SCC, one lymph node in neck and HPV+. I had (Surgery, radiation and Erbitux). They make you chose which treatment path to follow, but if you listen and have a good team of doctors, nurses, family members and friends supporting you, you will make the best choices for your treatment options.
Radiation is something they only wish to do once for treatment to kill the H&N cancer. How high a does may be is generally set-up by guidelines which they follow. So, some folks get a little and some get a lot and some get cured and some do not. I know a number of the H&N crowd who have been through the rads once, twice and maybe even a third time.
I only had to go through my prescribed 35 daily zaps and it worked for me. It is well known that today the standard for radiation treatments for many of the forms of H&N cancer are much lower then in previous years and today's H&N patients have far fewer damaging side effects.
That is enough from me,
CivilMatt
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Jim ~ When you get the staging and the specific diagnosis based upon that staging I would strongly recommend you talk to a couple cancer centers. It certainly made me comfortable knowing I spoke with 3 different places to have all the plans available. Keep us updated and ask questions and many on here will likely have been in similar situations. Good luck! We are pulling for you!
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I want to thank everybody who has responded to my post. As soon as I have all the staging details, I will let you know. I do have one question about the cancer centers people suggest I confer with. Do you mean like Dana Farber and Sloane Kettering. What about Mass General? I'm in western Massachusetts, sort of equidistant from both New York City and Boston. I noticed that Mass General offers an online second opinion - where they consult with your doctor and get all the pertinent info and then issue a written opinion. Is this the way it should be done or .... or how? Does anybody out there have experience with the Berkshire Medical Center in Pittsfield, MA. This ostensibly where my radiation would happen. Although, should surgery be an option, I think I would be best going to someplace that specializes in such.
Again thank you everybody and best wishes,
Jim
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When people on here talk about a major cancer center I think they mean places as you mentioned. If you are within traveling distance. The link below is an example.
Also if you have a cancer treatment center in your area you feel is very good or have heard from folks in the area that have had treatment there and are satisfied. I had my first cancer treatment at our local cancer center and I am very pleased with my treatment. I had successful treatment and was treated so well by the staff no matter where I went whether radiation, chemo, or just an infusion of liquid when I was dehydrated. They were getting advanced in their care and even installed a proton machine last year which they think will be in operation sometime in 2022. I have to give them a plug here.
I don't know anything about Berkshire but just do this search "Berkshire Medical Center in Pittsfield, MA. rating".
If it goes the way of surgery work with your cancer team there are different kinds of surgery and doctors that specialize and they sometimes utilize robotic surgery. In my last cancer episode, I was blessed to have some of the best surgeons.
Take Care-God Bless-Russ
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Jim ~ The reason I mention talking to different cancer centers is that there are different approaches to the cancer treatments. Just as Russ mentioned, there are some robotic surgeries that allow the doctors to get better margins and into tighter spaces. I personally was a non smoker, non tobacco user that was P16+ but I did a bunch of research and have friends on the board of a major hospital system and I know the CEO enough to reach out and he told me of different options.
Personally, I would ask about any new treatment trials they may have (or know about elsewhere) for your specific cancer and staging. I would ask about possible proton radiation treatments vs standard x-ray or gamma ray radiation. I would not just accept the first plan without knowing other potential options even if it meant traveling to another cancer center.
I used a place about 200 miles away from my city. It was in the same hospital system, but that team had the ability to use a mayo-clinic inspired trial. My surgeon is highly regarded nationally (I didn't know it initially) and they had been having great success in my specific type. I also spoke with Mayo Clinic in Rochester, MN and MD Anderson in Houston. Mayo trained my radiation oncologist and spoke highly of mine so I went that route. I spent 5 days in the hospital recovering from my radical neck dissection but they also took margins from my tongue, my soft palate and epiglottis. Recovery from surgery was a grind for me but I'd do it again if I had to because it worked.
Keep us up to date and someone can help provide guidance. My cancer was different but I'm an advocate about looking into different treatment options if they are available.
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Jim,
I'm fairly new to this group as well, and was diagnosed not long ago. I'm sorry to hear of your diagnosis, but glad you found this group! I am now attempting to get used to the very recent changes with this forum web site.
You should be able to see my thread not too far down. The site layout is a bit different to navigate now. However, I have transglottic cancer - (p16 on my left vocal cord) I am not sure if it has spread over to the other one or not by now. It seems like it has taken forever to get things moving.
I have a MRI tomorrow (last test) and then I am going to get a 2nd opinion just to make sure I cannot get surgery as I am only 46 and -- yep, radiation is once usually! ***Update MRI turned out ok for other suspicious area that they were 99% sure was not an issue but wanted that 100%***
If you find out you have a T1 or T2 lesion on your vocal cord you should be able to get laser surgery NO problem at a T1 hospital. The University of Chicago started it... Would seem the best way for you, IMO. Easiest and fast recovery.
I would inquire about every option available, you really don't want to have to go through radiation and chemo if you don't have to. If you are assigned a good team, they will guide you.
Let us know what you find out!!
-Steph
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Here’s the story …..
I went to my appointment with Dr. Gebara at the Hillcrest Cancer Center of Berkshire Medical Center; he was easy to talk with, full of information to offer and an unhurried and excellent communicator.
Also it turns out that Berkshire Medical Center and Dana Farber Cancer Institute have a collaboration agreement. Which means that BMC's standards and practices are validated by Dana Farber, along with other consultation benefits for me.
This is what I learned:
My Stage is T1N0M0. It is a Squamous cell carcinoma on the glottis. Only on one vocal cord and not very likely to spread if treated at this early stage. It’s the size of a pea. I came home and measured a bunch of peas - none of which were bigger than 1cm.
I was told there's a very high ( 90-95%? did I remember right?) cure rate with the 6 week radiation treatment, but a lower cure rate ( don’t know the % yet) with laser surgery.
I learned surgery is a possible path for me.
So I have to decide between surgery and radiation. Despite avoiding radiation and it’s side effects, I am told surgery runs a greater risk of a) reoccurrence and b) damaging the vocal cords thus affecting my speech. By how much I do not know yet.
2nd opinion will happen in Boston with a Dr. at Dana Farber or MA Ear Nose and Throat Hosp. Nothing has been set up yet.
Dr Gebara today said to take time to think and get informed and satisfied so when I choose a treatment I won’t have regrets of moving too fast or being pushed. I liked him.
So there we are. No so bad after all! Let me know your thoughts... does anything seem inaccurate to you.
If you've made a surgery vs radiation decision, I would would appreciate knowing what pushed your decision towards one or the other.
All the best, Jim
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Jim,
I went the radiation route. I am T2. I am Transglottic. If I were you I would just ask, but I have also heard radiation does save your voice more. If you are near Boston I believe they do it up there.
Get the best care team you can! I have 7 weeks radiation. No chemo.
Keep in touch, I even have photos of mine I can send. I'll be on my 2nd week of radiation next week, but had a short week this first week as I started the 8th.
I wanted to pursue surgery as you are only able to usually get radiation once.
Hang in there, I am right here if you need me. We can get through this together!
-Steph
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Per Russ -
Get your teeth cleaned and let them know you are having radiation if you choose that route!
Also, load up on Aquaphor, 100% Aloe (I have a huge plant), coconut oil.
EAT, if you aren't overweight - gain a bit. If you are hold steady and keep eating - you will lose weight. It will be difficult to eat later on.
Purchase a Vitamix or Ninja to make shakes/smoothies... You will get Magic Mouthwash and Lidocaine to help numb your throat. So get a good protein mix to add to smoothies!
I can still eat for now, but have Boost, Ensure and Orgain.
Remember to get 2 opinions. You may not have to go through radiation. A good care team will know. If you do go through radiation, I'm ahead of you. So, I will keep you updated.
Onward!
Steph
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Greetings all,
I thought I would write and document what has been going on with me.
Although radiation was initially recommended for my stage1 n0 cancer, I went to Boston to consult with Dr. Song at Mass General. He felt that I was a good candidate for surgery and after discussing both options, I decided to go with surgery.
I was an outpatient! I showed up on March 4 at 5:30 am and was out of there by 1:00 pm. I never took anything stronger than Tylenol for pain but I was unprepared for the anesthesia hangover which lasted days and really, really left me low.
I was told don't talk/whisper/shout for the first week - then 10 min per hour for the second week. I was allowed to eat anything I could tolerate - flan, ice Cream, egg salad and mashed potatoes in my case.
At the moment my voice is rather feeble and speaking is a bit of a strain. They tell me that my voice will come back but will probably have less volume. I'm hoping they are right.
So there it is in a nutshell.
Thank you all for your support. If anybody is contemplating surgery feel free to contact me.
All the best, Jim
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Jim,
Thanks so much for the update! I am so glad you did not have to have radiation. For a T1N0M0, you should have been a candidate for laser surgery.
You didn't mention which type of surgery you had, but I am so glad you are getting along well!
Thanks so much for the uplifting update!
You made my upcoming week!
-Stephie
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Jim,
So far, it’s sounding like you may have a good outcome. I hope your voice comes back soon...
I’m very glad to hear it, and I wish you and your family great news going forward!
Curt
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