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#172270 10-09-2013 12:58 AM
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I am diagnosed with Stage 3 Squamous cell cancer. I am 65 suffering from Type 2 Diabetes, Congestive Heart Failure and Hypertension. Currently all are under control and I am doing well. I had a stroke in Dec, 2012 but recovered from that as well. My first scan showed a tumor size of 4.2 * 4.3 * 3.3 cm about a month ago. In my recent scan the tumor size is reduced to 3.8 * 3.6 * 3.2 cm without doing anything. Should I wait a little longer before starting radio therapy hoping that my tumor will shrink more? Currently I am not facing any major problems due to the tumor. I know you all have experience coping with various problems related to cancer and hoping that I can find some answers. Thanks in advance!

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Welcome to the forum "Hap". I'm new to the forum myself, so I don't have any technical information to share with you. But, doing nothing, ie waiting/hoping for tumor shrinkage somehow just doesn't sit right with me. What are your doctors saying/recommending?

With all the other that's happened to you Happyguy looks like an appropriate username. You will find several others who share your upbeat attitude; they will all likely comment on your thread, offering their support.

You might as well create a signature line for the bottom of your posts; others will ask you to do it as well.

Stay happy.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Well perhaps, and I hope not but, have you taken account that human error has had anything to do with why your tumor measurements would have, on its own changed in the direction that is for the good. But of course I am not a DR. Maybe you should ask your dr. what he may think. If your tumor did shrink in size and continued to until it was gone that would fall under the signpost just ahead....this is the twilight zone.
Shawn U.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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Hi Tony, Hi Shawn,
Thanks for your prompt response. Happy to meet you but wished it was a happier forum. Definitely it was shocking to have been diagnosed with Stage 3 cancer but I have such a supportive family that I thank God everyday. Having their support I was able to overcome the initial shock and anxiety.
Yes, Shawn I have not taken into account human error. Thanks for pointing that out. Tomorrow I will consult with my oncologist if I should start with radio therapy right away or wait for 2 weeks and get another scan done to check if there is further shrinkage.

Wish you both good health and happy times!
_________________________
9/19/13 Diagnosed Stage 3 Squamous cell carcinoma of the oropharynx

Last edited by happyguy; 10-09-2013 04:37 AM.
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Welcome Happyguy. I'm sorry for all your past and current health ills. What type of cancer is this, N staging, nodes? What do your doctors say, and what is their plan of action, reason for delay? Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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If your Primary is in the Oropharynx and it's that big I wouldn't wait. I also would get a PET to see if any nodes are suspected.

How did they confirm SCC?

Did they do a biopsy?

Did they test the cells for HPV?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Welcome to OCF! You have found a great place to be! We will help you get thru your treatments with info and support.

Why is there a delay in starting treatments? Did you have surgery? By delaying, it will only make it more difficult to treat. Are you doing chemo while you are waiting to begin rads?



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi Paul!
I have been diagnosed with Stage 3 Squamous cell carcinoma of the oropharynx. It has not yet spread to the nodes.
My recent CT scan showed a 27% volume reduction in tumor without starting the treatment.
My doctor has suggested Radio Therapy IMRT 70 Gy for 7.5 weeks, 5 days/week. However, my tumor has shrunk by 27% without any treatment. So I am wondering if I should wait further so that the tumor shrinks more. If that happens then I will be eligible for Cyber Knife which will be done in 2-3 days as compared to 7.5 weeks of IMRT. Any thoughts or suggestions or similar tumor shrinking experience are welcome!
God Bless!!

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We are not doctors so my best advice would be to get their opinions and ask questions.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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David is right, ask your doctors, BOT can be difficult to treat, pesky, and go deep into the musculature, more likely to metastasize. I don't know what depth Cyberknife goes, and don't think it covers a broad area. Disappearing primary can happen, one if it's HPV related, the body could have fought it off, but they metastasize to the nodes quickly, another is that it moved on, usually to lymph nodes, and took all the blood, nutrients with it, and primary dies off. Another guesstimate is that there could be a co-existent factor, like infection, inflammation, cyst, that was part of the disease process, and not differentiated from the tumor. Good luck with your decision.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hey there...
and welcome.

Let me first start by saying the type of scans you've had and the the person reading the results could very well make up for the differences in the size. What you see as a reduction could very well be just a margin of error. There are differences between whether you've had contrast dye or not, whether you've had a PET/CT, CT, or MRI. All give a different kind of picture, some more accurate than the others. The Tesla of the machine also makes a difference - higher tesla, more accurate the scan. Also the fact that some scans (PETs) work on a sugar based dye that shows a higher up take in the tumor - may also have something to do with the fact you area diabetic, the meds you are taking and your blood sugar at the time. Since diabetes medication stimulates the cells to uptake sugar, if you had your meds and your blood sugar was higher you may get more infused area... (normally diet effects uptake too)

My first CT was done with contrast at my local hospital, my second at a cancer hospital. The differences were minimal - mere millimeters but this is why the cancer center wanted their own in house team to look at a scan done by them. It gave them a clear accurate picture by a radiologist they trust and know. Since they design radiation plans around these scans.

There is a minor possibility that the some of what showed up on the initial scan was inflammation (in the surrounding area), and maybe the second scan, was less inflamed and that would make up for the difference in size since it is often hard to determine the differences between inflammation, infection and a tumor. This is why there are always differences and why we leave the reading up to those who are trained to.

Sometimes a small primary will resolve itself (this is how we get some occult findings) but this is rare and as far as I know usually it shows up in the nodes regardless. So basically what the means is they may not find the original primary tumor but they find the cancer elsewhere - usually the neck nodes. Your tumor being a stage three is quite large. I am assuming you've had a biopsy so you know it's cancer. At this point if there is no nodal involvement there's a good chance that despite what the scan says there is likely cancer on a cellular level in at least one of your nodes. So in answer to your question - chances of it resolving itself... likely nil. Chances of it spreading if you wait any longer - VERY HIGH.

Deal with it now before it becomes life threatening. Healthwise you are somewhat compromised - despite the fact that everything is stable right now, you want to do battle when you are at your healthiest, not when you get sicker. And waiting could be deadly.

best of luck.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Dear All-
Thank you so much in taking the time to explain the possible reasons for the shrinkage. I really appreciate all your support. I cannot take surgey or chemo due to my present health conditions. So that leaves me with radiation. My doctor mentioned to me that I can expect severe complications with that as well. So after seeing the tumor shrinkage I was happy but now I gather that it might not be the case.
Thank you all for your support and prompt responses.
Wish you all good health!

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Happyguy I am sorry that what cheryld has told you is probably right on the money.(though we are not Dr.s) It is good advise. that you fight the good fight while you can. I too am in a situation that no further treatment has been recommended from a surgical standpoint or from a radiological standpoint as well. Leaving me with Medical oncology. But a point that has been driven home with me is that I cannot be sure that one Dr. or facility wont do, does not necesarally preclude a different Dr. Or facility from finding that they can and will. So don't give up the ghost! Shawn U.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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The best thing you can do to help yourself get thru this as easy as possible is to begin right ow focusing on your intake. Every single day take in a minimum of 2500 calories and 48 oz of water. Get used to this now as you will need to do this for at least the next year to help with recovery after rads is over.

I know it sounds like its alot but really thats the bare minimum you should get. With your health concerns you may need even more like 3500 calories and 64 oz of water daily. Your body burns up calories at an amazing rate while fighting cancer and trying to rebuild itself during and after treatments. Of course try to get the healthiest foods you can but also eat all your favorites now as well. Your sense of taste will change and eating probably will become difficult with your sense of taste being off and swallowing becoming a monumental task. You do not want to go into this craving anything so eat it now, especially any spicy or hard to swallow foods.

Wishing you all the very best with everything.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Dear Shawn & Christine,
I really appreciate your support and words of encouragement. I wish you good health and speedy recovery. It's very encouraging to see your spirit.
Christine, thanks for your tips on the diet. It's very essential to eat healthy and all my favorite stuff while I can.
My radio therapy starts on 21st. I will keep you informed about my progress.
Good luck and have a great weekend..Take care

Last edited by happyguy; 10-11-2013 12:01 AM.
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