How Long Has This Been Goin' On'

fishmanpa · January 2013

Remember that song by Ace?

A question I posed in my first thread post, I'm posing to the group.

Two part really. How long was it from the time you were first diagnosed until you began treatment? Also, from the time you got the mask and had the simulation done until the treatments started?

I had my visits with the radiation and chemo oncologists a week ago. They made the mask and ran the sim. I figured I'd hear something this week. I called yesterday and was told it probably would be a few weeks. A few weeks? I was under the impression from the way they were talking that I would be starting in less than two weeks which would mean having the schedule done this week and starting the week after. I was a little upset and unfortunately I let that show to the poor gal on the phone.

Meanwhile, since I was diagnosed, the tumor has grown from 3.1cm per the CAT scan Nov 14th to 5+cm (but under 6) as of last week. I'm not in any real discomfort but I feel it there. The only real symptom (which is worsening) is a clogged ear and sinuses on the left side of my face.

While I'm not looking forward to treatment, I'm chomping at the bit at the same time. I have this monster inside of me having a field day on my cells and body and I want it out!

Later yesterday afternoon, I got a call from the head of Medical Oncology at the hospital who got wind of my frustration. While I wasn't thrilled by everything he had to say, he explained to me the process and was quite the diplomat. We spoke about scheduling and times and he's supposed to give me a call today with some news and information. It just seems things are moving so slow. I had a heart attack in 2007 and was under the knife for bypass surgery in 5 days. Now I have a "Jack" in my neck and it's been 2 months!

What was it like for you? Did it seem as if the sense of urgency was missing? How did you deal with the waiting?

"The Waiting is the Hardest Part" Tom Petty

"T"

NJShore · January 2013

Timings

T,

t2n2bm0 stage IV A left SCC

10/11/12 - We heard the "you have metastic cancer" call

10/22/12 - 2nd opinion and he was our choice for treatment

11/02/12 - 10.5 hrs of 2 surgeries, left tonsil, neck dissection

11/27/12 - planning session, mask making

12/04/12 - trial run, and first treatment

01/14/13 - finished!!!

hope this helps!

Just curious, are you from PA? My husband is getting treated in Philly.

Good luck with your follow up calls today!

Kari

Skiffin16 · January 2013

Time In A Bottle...
Dx January 2nd, 2009
Tonsils Out January 5th
Port put in late January
PET scan late January
Bout with Diverticulitus late January
First Chemo February 6th
Chemo/Radiation Ended June 18th, 2009

My mask was actually made and fitted in January, but I didn't start rads until early May...pleanty of time for anxiety to build.

I had nine weeks (three seek cycles) of Cisplatin, Taxotere and 5FU before the concurrent weekly Carboplatin and daily rads. I also had the tonsils as the primary, but a tumor (lymhnode) secondary near the carotoid, they chose to leave the tumor to see what effect the chemo and rads would have on it leaving a less invasive dissection possibly.

For me that was a great call..., the tumor completely went away near the end of the nine week sessions, confimed with a CT before starting the seven week regime'...it never has shown again.

Yes, like you I wanted to get started, get this out of me... It was a little slow, but then for the next sixteen weeks, you are the star...the center of attraction nearly every day.

Best,
John

fisrpotpe · January 2013

i see a difference

i see a big differnce in treatment facilities. i went to Indy for my diagnosis which is 2 hours away, i could have gone 7 min. away here in town. i watch several i know go thru the same process of diagnosis to start of treatment and take 6-8 weeks to start. from the start to look for problem to diagnosis was 10 days, from diagnosis to treatment start 19 days with an out patient surgery in that time to find the primary. had mask made and set up 4 days before treatment with two days being a weekend.

search for problem start jan 7 told cancer on jan 17th SCC

out patient surgery for search for primary jan. 26th

fitted for mask feb 1st

treatment started feb 5th with chemo 24/7 5 days 3 cycles every three weeks (two chemo's) and start of radiation

finished treatment march 28th

first scan post treatment may 15th

neck disection and found only scar tissue june 4th

waiting is the worse of worse and i felt the same. keep in mind it's about success with treatments along with how they help you with side effects during treatments. i can say this, the last is far better today.

praying you get some peace from your updated schedule when you get it.

john

fishmanpa · January 2013

Hmmm

Thanks for the timelines. Indeed it seems like a mixed bag but sooner rather than later concerning the start of treatment.

I can kind of understand the lessened sense of urgency as I've probably had this growing in me for close to a year. I didn't notice anything until August of 2012 when I got a sinus infection/cold. The ENT said I've probably had it much longer and didn't realize it. But it is alarming the progress it's made in just two months.

I'm going tomorrow to Johns Hopkins for a 2nd opinion. I'll be meeting with an entire "team" of specialists from surgical, medical and radiation oncology as well as a speech language pathologist and nutrition expert. Where I'll be getting treatment, there has not been that kind of coordinated effort which is disconcerting. Unfortunately I can't travel the 2+ hours every day for treatment. I'm in VA (answers your question Kari, although I'm originally a S. Jersey boy *exit 4*) and just 25 minutes from Winchester where I'll be getting treatment. The Head and Neck Center Coordinator at Johns Hopkins agrees that it's not practical for me to have treatments there as the facility in Winchester does have the latest in IMRT equipment. My medical/chemo oncologist and ENT said I'd probably get surgery if it's needed at Johns Hopkins as they have the latest robotic surgery techniques going and I'm all for less morbidity! I'm hoping I won't need to go under the knife.

I'm off to a chemo class today in Winchester and I'll pose that question there and see what kind of answer I get.

"T"

MarineE5 · January 2013

Time Frame

Hello Fishmanpa,

Base of Tongue cancer here. Surgery early Oct, 2004, fitted for the Mask at the end of Oct. I was told that Radiation would not start until at least 6 weeks after my Surgery and Neck Disection, time for my neck and throat to heal.

I got antsy at the 6 week mark and it had been two weeks after the Mask fitting. I called the Radiation Oncologist and he mentioned to me that he does not plan the angles of the Radiation beams and doseages alone. A Physicist works that out along with the Radiation Oncologist. It was a total of 8 weeks from time of the Surgery to the first Radiation treatment.

Sometimes waiting to start is just as hard as going thru the treatments. Like you, I wanted my cancer out of me, the sooner the better in my eyes.

My Best to You and Everyone Here

amy_h414 · January 2013

waiting

My husband had two weeks between the mask/planning session and the start of radiation. In those two weeks, he had another biopsy, met with the chemo doc, had a PEG put in, and had another biopsy. So while we were anxious for him to get started, there were several things that had to be done before he could start rads. There wasn't a lot of time to sit around anxiously waiting because he was going to a lot of appointments. I hope you can get some solid info on when you'll start, it's so hard not knowing.

phrannie51 · January 2013

I started chasing

the enlarged lymph node in January, 2012....I wanted them to tell me what and why it was there, and it wasn't until March 26th that I got the definative answer....that took 3 months and was making me a wreck. I got the mask 4/5/12, my port 4/12/12 (where they nicked my lung, so was in the hospital a week, got my PEG while still in the hospital on 4/18......treatments finally started on 4/24/12 (rads and chemo started the same day).

LOL....now I've got that song playing over and over in my mind....

p

Ladylacy · January 2013

Time

My husband was diagnosed with laryngeal cancer in July 2010. He started radiation and chemo about 6 weeks later. Second diagnosed of cancer at the cervical of the esophagus was in mid-April 2012. He started another round of radiation and chemo in late May. Mask was made both times and treatment started within one week. Each 35 radiation treatments were done at two different places. The second time at Emory Winship Cancer Center because that is where he had his laryngectomy and it was that surgeon that found the second tumor one year later during a procedure for a TEP.

cureitall66 · January 2013

Time Frame....

Felt lump in mid July and went to Primary Physician went through routine antibiotics, then ultra sound and MRI, was referred to ENT.

Aug 15, 2012 Biopsy of Neck (ENT)

Aug 24 EKG clearance (due to prior heart attack & bypass)

Aug 27 Additional Biopsies to find primary

Sept 13 Tx Center- U of M- Pet Scan -Met with ENT

Sept 17 Board of Doctors reviewed case

Sept 21 Met with Radiologist

Sept 28 Dentist & Fitted for Mask

Oct 8 Started tx

Nov 27 Ended tx

Hope this helps.

DX: SCC BOT, 2 lymnodes involved, HPV+ TX: 7 wks Chemo (Carboplatin & Paclitaxel), Rads- No Surgery

~C

fishmanpa · January 2013

cureitall66 said:
Time Frame....
Felt lump in mid July and went to Primary Physician went through routine antibiotics, then ultra sound and MRI, was referred to ENT.

Aug 15, 2012 Biopsy of Neck (ENT)

Aug 24 EKG clearance (due to prior heart attack & bypass)

Aug 27 Additional Biopsies to find primary

Sept 13 Tx Center- U of M- Pet Scan -Met with ENT

Sept 17 Board of Doctors reviewed case

Sept 21 Met with Radiologist

Sept 28 Dentist & Fitted for Mask

Oct 8 Started tx

Nov 27 Ended tx

Hope this helps.

DX: SCC BOT, 2 lymnodes involved, HPV+ TX: 7 wks Chemo (Carboplatin & Paclitaxel), Rads- No Surgery

~C

So it seems....

Seems like it really is a couple of months give or take to get everything in place for treatment. It's still frustrating knowing this beast is throwing a beach party in your head and neck and there's nothing you can do about it. However, I have a feeling that "Jack" bears no resemblance to Annette Funicello.

"T"

cureitall66 · January 2013

fishmanpa said:
So it seems....
Seems like it really is a couple of months give or take to get everything in place for treatment. It's still frustrating knowing this beast is throwing a beach party in your head and neck and there's nothing you can do about it. However, I have a feeling that "Jack" bears no resemblance to Annette Funicello.

"T"

Thoughts...

T,

I remember my loved one feeling the same way as you and it was driving him crazy. Someone (think it was Billie67) said she felt the same way and her doctors told her that it doesn't grow as fast as our minds like to think it does. Knowing and thinking that really eased our minds. It's swollen right now and is to be expected. His appeared bigger prior to tx also. Try not worry, they will get it very soon.

~Cureitall....NEVRSTP Fighting..

BTW....Love Tom Petty...Song that comes to mind is "I Won't Back Down".

Greg53 · January 2013

cureitall66 said:
Thoughts...
T,

I remember my loved one feeling the same way as you and it was driving him crazy. Someone (think it was Billie67) said she felt the same way and her doctors told her that it doesn't grow as fast as our minds like to think it does. Knowing and thinking that really eased our minds. It's swollen right now and is to be expected. His appeared bigger prior to tx also. Try not worry, they will get it very soon.

~Cureitall....NEVRSTP Fighting..

BTW....Love Tom Petty...Song that comes to mind is "I Won't Back Down".

Time (Pink Floyd reference)

T,

What I’ve noticed is a variance on timeframes here. Lucky for me (from a worry standpoint), mine was fast. The sooner, the better – but a lot have had a bit of a wait on here. You'll be good:

· Initial dx – 1/8/10

· Second opinion – 1/13/10

· Biopsy – 1/15/10

· Tonsillectomy & Neck Dissection – 1/21/10

· Start 7 weeks of rads concurrent with 3 chemo (cisplatan) - 2/22/10

· Rang da bell – 4/12/10 (actually no bell at my facility – but I love the idea of the bell)

Here’s hoping it gets moving quick for you Dude! Sending you some good mojo!

Greg

ps- can't event think of the words of that song -i just like Floyd - meant as a positive thing (plus I'm old and that's the only "time" song that came to mind)

blackswampboy · January 2013

ticking away the moments that make up a dull day ;-)

diagnosis early April, 2012...rads and chemo started about 6 weeks later. in between was a whirlwind of appointments, scans, endoscopy, hearing test, dental checkup & cavity filling, PEG tube & chemo port insertions, and erbitux "loading dose". didn't seem like much time wasted to me.

I actually had a slightly different experience with the waiting...my ENT is Taiwanese, I lived on Taiwan for many years, and have even had their national health insurance. when I raised the possibility of getting treatment in Taipei (which would have delayed things by a month or two)--she stongly suggested that I should not take any delay--time was of the essence. I do believe that they got me into tx as fast as possible.

and of course I'm very satfisfied with the treatment I got here in ohio, although it was considerably more $$$$ here.

Greg--you beat me to it.

Pam M · January 2013

Anticipa a tion - It's Making Me Wait

You guys have got me humming - I started singing as soon as I saw the thread title.

T2N2MO Base of tongue - both affected nodes on right side

Sept 25 or 6, 2009 - found a lump in my neck (it was really big - how did I not find it earlier?) - Urgent care gave me antibiotics

about 3 weeks later, PCP sent me to ENT - FNA and scope - test sent out to check for Cat Scratch Fever (really)

Oct 25 or 6 - Open biopsies and tonsillectomy - period between surgery and start of chemo sucked - pain and inactivity on the battle front, combined with uncertainty on where to go for treatment made me crazy

Mid Nov - Decision made, PICC line installed the next day, Induction Chemo started

Dec 19 - hospitalized - neutropenic fevers of unknown origin - feeding tube placed Christmas Eve (didn't need it then, but since I was already in the hospital . . .)

Late Jan, 2010 - mask made, simulation run - chemo rads started the following week

Mid March - rads done

Dec 21, 2010 - Radical Modified Neck Dissection done to finish the job

April, 2011 - CLEAN SCANS!

I have been told that most cancers develop over a period of 5 to 40 years - wow.

CivilMatt · January 2013

as I remember

T,

Forever etched in my Brain (and written down for when I don’t have a brain)

Nov. 11, 2011 – felt lump in neck while shaving

Nov. 14, 2011 – appt. with GP, told to wait a week to watch

Nov. 15, 2011 – blood test

Dec. 7, 2011 – ENT, FNA (twice)

Dec. 12, 2011 – surgery neck and tongue

Dec. 23, 2011 – you have CANCER!

Dec. 29, 211 – meet rad onc, watch video, take picture IT IS ALL TO REAL!

Jan. 3, 2012 – meet chemo onc , meet ERBITUX!

Jan. 5, 2012 – mask making 101

Jan. 12, 2012 – PICC placement

Jan. 13, 2012 – loading dose Erbitux

Jan. 19, 2012 – colonoscopy, endoscopy, PEG installed

Jan. 19-30, 2012 – hospital stay, Ileus lower tract shut-down for 12 days

(delays treatment for 2 weeks)

Feb. 6, 2012 – start rads

Feb. 10, 2012 – start regular Erbitux

Feb. 27, 2012 – 2^nd PEG

March 23, 1012 – finished rads & Erbitux

End of December wife finds H&N forum, starts getting ready for inevitable. Drinking water and swallowing becomes our mantra (best advice I could get from veterans)

There you go, I hope it helps you stay mellow.

Matt

fishmanpa · January 2013

Trusting your gut...

So I was supposed to get a call today from the head of Oncology at Winchester Medical. It didn't happen. I had his number on my cell and left a voice mail. Still nothing. In my business, when I say I'm going to do something, I do it. If I can't accomplish the task, whatever it is, I still call the client as a courtesy even if I don't have the best news. This doesn't sit well with me.

I saw the social worker/patient guidance counselor at the hospital today when we attended the chemo class and I mentioned that I had spoken with him and that he was to return my call with some information. When I voiced my concerns about the follow up and appointment setting, she said I was welcome to let them know on my patient survey? Really? On the other side, the class my partner and I attended was very comprehensive. We were given a bunch of information and that instilled some confidence as far as the actual infusion sessions are concerned.

I like the doctors I've been referred to, especially my chemo doc but I don't have a good gut feeling about things. Conpared to the response I've gotten from Johns Hopkins, this place seems more like it's run by the Three Stooges. I'm waiting to hear "Calling Dr. Howard, Dr. Fine and Dr. Howard" anytime!

I don't really have a choice on a place of treatment due to my location so I feel like I'm between a rock and a hard place.

Perhaps the "squeeky wheel gets the oil" approach is warrented. I'm looking forward to tomorrow and my visit to Johns Hopkins. At least I'll know if the treatment plan is concurrent with their findings.

"T"

ditto1 · January 2013

fishmanpa said:
Trusting your gut...
So I was supposed to get a call today from the head of Oncology at Winchester Medical. It didn't happen. I had his number on my cell and left a voice mail. Still nothing. In my business, when I say I'm going to do something, I do it. If I can't accomplish the task, whatever it is, I still call the client as a courtesy even if I don't have the best news. This doesn't sit well with me.

I saw the social worker/patient guidance counselor at the hospital today when we attended the chemo class and I mentioned that I had spoken with him and that he was to return my call with some information. When I voiced my concerns about the follow up and appointment setting, she said I was welcome to let them know on my patient survey? Really? On the other side, the class my partner and I attended was very comprehensive. We were given a bunch of information and that instilled some confidence as far as the actual infusion sessions are concerned.

I like the doctors I've been referred to, especially my chemo doc but I don't have a good gut feeling about things. Conpared to the response I've gotten from Johns Hopkins, this place seems more like it's run by the Three Stooges. I'm waiting to hear "Calling Dr. Howard, Dr. Fine and Dr. Howard" anytime!

I don't really have a choice on a place of treatment due to my location so I feel like I'm between a rock and a hard place.

Perhaps the "squeeky wheel gets the oil" approach is warrented. I'm looking forward to tomorrow and my visit to Johns Hopkins. At least I'll know if the treatment plan is concurrent with their findings.

"T"

Hey "T"

Nice to meet you sorry its on this forum. I was dx in March 2012 and I did not get started with tx until May. Stumbled thru two Ents and that put me behind a month. But one thing Ive learned its not a oh you got cancer check in tommorrow and we will get started, its more like hurry up and wait. But as others have said once they do buckle you up for the ride its non stop until the treatments are over. So welcome to the Hey I have Cancer anybody out there club. They are out there and once it gets started it will seem like a blink of the eye and it will be over, my opinion. I think its like life in general, I used to say this has been a long day at work and then I would think where did the 37 years of working go,, so life is short so in fact everything we experience is faster than we realize. Bla bla bla, hope you get my main point. You get ready and before long you will be posting how its nice to be done.

fishmanpa · January 2013

ditto1 said:
Hey "T"
Nice to meet you sorry its on this forum. I was dx in March 2012 and I did not get started with tx until May. Stumbled thru two Ents and that put me behind a month. But one thing Ive learned its not a oh you got cancer check in tommorrow and we will get started, its more like hurry up and wait. But as others have said once they do buckle you up for the ride its non stop until the treatments are over. So welcome to the Hey I have Cancer anybody out there club. They are out there and once it gets started it will seem like a blink of the eye and it will be over, my opinion. I think its like life in general, I used to say this has been a long day at work and then I would think where did the 37 years of working go,, so life is short so in fact everything we experience is faster than we realize. Bla bla bla, hope you get my main point. You get ready and before long you will be posting how its nice to be done.

Sitting, Waiting, Wishing

Great tune by Jack Johnson....

Thanks Ditto and everyone.

I guess it's part of the emotional roller coaster ride. I've just been feeling like I've been "sitting" in the front car "waiting" for the ride to start and "wishing" it would be sooner rather than later.

"T"

ausrebel53 · January 2013

fishmanpa said:
Sitting, Waiting, Wishing
Great tune by Jack Johnson....

Thanks Ditto and everyone.

I guess it's part of the emotional roller coaster ride. I've just been feeling like I've been "sitting" in the front car "waiting" for the ride to start and "wishing" it would be sooner rather than later.

"T"

Mr. T

One thing is for sure Mr T., the growth will never be as "thick as a brick", it will be out of you before you know it.

regards

Michael

Laralyn · January 2013

Mine moved quickly...

...but then again, so did the cancer. I had a clear CT scan of an enlarged lymph node and nothing showing when there was a tickle in my throat in late November 2011, and by mid-March 2012, there was a visible mass pressing on the back of my tongue from the soft palate. I remember my radiation oncologist mentioning a trial starting "in a couple months" at the hospital where he practiced, but he said, "You can't wait."

I was diagnosed around March 25. The oncologist met with me a couple days later, and sent me straight to the dentist. They pulled a wisdom tooth and while it was healing, the technicians did the pre-radiation planning scans. The oncologist came straight from the airport (coming from a conference) on a Saturday to do the mapping so they could start treatments the first day it was feasible (waiting for the wisdom tooth extraction to heal).

I went from diagnosis to my first radiation and chemo treatment in two weeks. I think it was a special case, though.

A big part of the process is trust. I'm kind of a control freak for many aspects of my life so I had to learn to trust the medical professionals to understand the situation and do what was best for me. They did, and I'm sure the folks treating you will too. Get a second opinion for sure, though, because being comfortable with the people treating you is really important. You'll also be seeing these folks A LOT over the next few months. :-)

How Long Has This Been Goin' On'

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