Newly Diagnosed and SCARED!

swopoe

My husband was diagnosed 4

My husband was diagnosed 4 yrs ago. He was almost 41 yrs Old. I immediately imagined a life without him. And he is still here doing great! The others have given great advice. Don’t google. This board and these new friends will become your saviors. So much of what my husband and I needed to get through we learned from right here. You can do this. You are stronger than you know! Best of luck with the PET scan results. Sending my love!

wbcgaruss

Kempta I AM Sending

Prayers your way. Praying right now for your PET scan results to be on the positive side and for your final outcome to be NED (No Evidence of Disease). Also praying you to have an easy treatment plan that is not too hard on you.

Link to prayers for people dealing with cancer---https://cancerprayernetwork.com/bible-verses-about-healing/

You will find this board to be the best support you can get anywhere. Any questions you have most likely someone on here can answer it. Anything you are going through someone on here has gone through it already and can give you first-hand experience of how to deal with it.

I am also glad they are being helpful where you work that is great.

And you are correct on this cancer situation being your job now-get this thing beat then move on but if you can work through it that is OK too.

And I must say you got a quick response to your posting from many people and much help-I am thankful so many people answered your posting-we are here to help-God Bless

 

 

 

Dagney1924

wbcgaruss said:

Kempta I AM Sending

Prayers your way. Praying right now for your PET scan results to be on the positive side and for your final outcome to be NED (No Evidence of Disease). Also praying you to have an easy treatment plan that is not too hard on you.

Link to prayers for people dealing with cancer---https://cancerprayernetwork.com/bible-verses-about-healing/

You will find this board to be the best support you can get anywhere. Any questions you have most likely someone on here can answer it. Anything you are going through someone on here has gone through it already and can give you first-hand experience of how to deal with it.

I am also glad they are being helpful where you work that is great.

And you are correct on this cancer situation being your job now-get this thing beat then move on but if you can work through it that is OK too.

And I must say you got a quick response to your posting from many people and much help-I am thankful so many people answered your posting-we are here to help-God Bless

 

 

 

Lymphedema

Hi! I'm new here to post, been lurking for awhile. I saw that you had surgery on your lymph nodes? I had first surgery last month

to remove pre cancer cells in my mouth and they removed lymph nodes in neck just as a precaution. I'm not sure that was the 

Right decision, but now I have edema and will need to go to physical therapy. Did that happen to you? 

Thank you

SuzJ

Dagney1924 said:

Lymphedema

Hi! I'm new here to post, been lurking for awhile. I saw that you had surgery on your lymph nodes? I had first surgery last month

to remove pre cancer cells in my mouth and they removed lymph nodes in neck just as a precaution. I'm not sure that was the 

Right decision, but now I have edema and will need to go to physical therapy. Did that happen to you? 

Thank you

Dagney

Best to start your own thread, as this will get lost.

 

There are ways to deal with the Lymphadema

ByeByeCancer

You've got this!

My husband had stage IV SCC at the base of his tongue. Also HPV +.  He had Cetuximab and 35 radiation treatments.  No PEG tube and ended up on a liquid diet (lots of smoothies...we added benecalorie for easy calories) for a few weeks in there.  Everyone reacts to treatment differently, but my husband went to work every day after his radiation appointment.  There were some days he came home early but I think the idea of keeping a normal routine helped him.   He is now cancer free for just over 2 years!  You've got this!!

Richard LaForest

My husband was treated for

My husband was treated for squamous cell carcinoma of the tonsils with radiation and chemo last year.Following the treatment scare tissue  developed in his jaw which limited his ability to open his mouth. In addition, he had to have two teeth extracted ( damaged because of radiation) and since then has terrible pain in the jaw. 
the pain is so severe that he can barely do his mouth exercises with his Therabite.  we are going back to the Dr. this coming Thursday and are hoping to get some help.Has anyone experienced anything like this? The only way my husband can take any food in is through his feeding tub. He also has a lot of pain on the tongue.

annie4145

Hi, I had a different type of

Hi, I had a different type of cancer, but was treated with 5FU, Mitomycin and Radiation.   I was 51 when I was diagnosed with stage 3 cancer, with 2 kids at home.  Very scary! I had serious thoughts about what the future would hold, but I wanted to assure you that one year from now, life will be much better.    You will get through it.   I probably could have worked for at least the first week or two, but I just took about 8 weeks off (6 weeks for treatment, then 2 weeks after, then went in part-time for two weeks, and then started up again full-time, but it took another month or two before my energy really returned to normal.   I did not have bad nausea except when I decided not to take my anti-nausea medicine (I thought I would sleep it off instead), so I encourage you to stay on top of any medicine that  is given to you.  My doctor's were wonderful.  They provided everything that I needed.  I didn't have to buy cream or supplies because they gave everything that I needed to me.  I did buy a soft toothbrush and some toothpaste that is supposed to be better for cancer patients.  I also ended up staying in a hotel near the hospital because I live approximately 2-1/2 hours from the facility.  Where are you treating at?  (American Cancer Society can assist if you need transportation or hotel arrangements.)  Don't get scared by what some people write.  One person said something (the PICC line) would be painful, but it turned out to be nothing at all, easier than a dentist appointment.  No matter what they threw at me, I just kept the attidude, give me more because I am going to beat this the first time.  See if you can apply for SDI.  I didn't do it so I don't know about that.  On the first day, the treatment will seem endless.  Six weeks seemed so long....  But it flew by fast, and then you will be done.  

motorcycleguy

annie4145 said:

Hi, I had a different type of

Hi, I had a different type of cancer, but was treated with 5FU, Mitomycin and Radiation.   I was 51 when I was diagnosed with stage 3 cancer, with 2 kids at home.  Very scary! I had serious thoughts about what the future would hold, but I wanted to assure you that one year from now, life will be much better.    You will get through it.   I probably could have worked for at least the first week or two, but I just took about 8 weeks off (6 weeks for treatment, then 2 weeks after, then went in part-time for two weeks, and then started up again full-time, but it took another month or two before my energy really returned to normal.   I did not have bad nausea except when I decided not to take my anti-nausea medicine (I thought I would sleep it off instead), so I encourage you to stay on top of any medicine that  is given to you.  My doctor's were wonderful.  They provided everything that I needed.  I didn't have to buy cream or supplies because they gave everything that I needed to me.  I did buy a soft toothbrush and some toothpaste that is supposed to be better for cancer patients.  I also ended up staying in a hotel near the hospital because I live approximately 2-1/2 hours from the facility.  Where are you treating at?  (American Cancer Society can assist if you need transportation or hotel arrangements.)  Don't get scared by what some people write.  One person said something (the PICC line) would be painful, but it turned out to be nothing at all, easier than a dentist appointment.  No matter what they threw at me, I just kept the attidude, give me more because I am going to beat this the first time.  See if you can apply for SDI.  I didn't do it so I don't know about that.  On the first day, the treatment will seem endless.  Six weeks seemed so long....  But it flew by fast, and then you will be done.  

annie is right

It does seem so long, when you're looking at the start - but if you keep as much of a positive attitude as possible - you'll be looking back on it, before you know it!

Jpg

6years out

Hi Kempta very sorry to see you have become stricken by this,I'm 6years out I had Squawas cell like you I had a radical done on me its been a tough 6years but I'm still here if that's any comefort.I wont lie to you its going to be a life changing experience don't think for one minute its not going to be rough its going to be.Now that being said maybe that will give you the attitude your going to need you are now a fighter you are going to overcome things you never thought you could time and time again jou just need to keep up with the fight we will all be in your corner for all the emotional help but you are the one in the ring taking the hits only you can win this fight once I realized that I came up with a strategy just don't stop fighting.The truth sometimes isn't easy and you will find a lot of people will try to sugarcoat things that will never do you any good If you don't know the truth how can you comeback with a strategy to get threw it.Radiation Sucks after the first 15 days the next 20 days where hell radiation sickness.I lost the use of my jaw cant open my mouth thanks to radiation and surgery I had teeth pulled so i could jam food between the gaps at times it is funny extremely painful jaw neck and shoulder pain lost some use of left had do to they took part of my wrist and artery to rebuild my mouth o ya and the skin graf on my leg to repair what they took from my wrist,feeding tube sewn into my nose,tracheotomy ya all that was real fun LOL,YES after all this I'm writing to you I'm 58 years old now and still FIGHTING so please become a fighter.MY name is John I live in North East Pennsilvania if you ever need to reach out if it gets to be to much I'm in your corner whenever you need someone. Thank God I was blessed with the love of my life that took care of me through those tough times.God Bless you through these tough times. [content removed by CSN Support Team]

rphail

Scared and what's ahead

I am so sorry that you have to meet us like this, but we are survivors and that's what we want..helping others traverse this nasty mess.  First, my treatment was rough, it was like having the flu for 3 months straight, fatigue, nausea, aches... but remember the last time you went out with family or the girls and had a amazing time, laughed so hard...THIS is what is ahead for you, you will beat cancer, you will learn to love the moments more than before!

I did work through chemo and radiation but I also was under pressure (from myself) because of work, my wife had just passed from cancer (yeah I'm a lucky boy) 8 months prior to my diagnosis so I had spent the year and a half taking so much time with my wife to care for her, be with her at visits, treatments, etc.  So I went to the hospital each morning Mon-Fri, did 10 mins of radiation, hauled my booty to work and tried my best to not fall asleep all day.  It was rough but I think my company sees how hard i am willing to work for my spot.  It can be done but it's rough.  Some work places are more understanding and will ensure you have a spot to nap or rest when needed, even if that's just a small area with a office chair and a throw you can rest for 30 mins to regroup.  Granted, Chemo day (monday) was most of the day, I work in IT so with a laptop in bed I was able to work all day still.  Now I am almost 2 years out from treatment and though i still live with complications (no tastebuds, no food since feb 2018) I am alive and so excited about it.  Get your support staff together, tell them to watch you and encourage you.  Some things that made our lives easier when I was going through my wife's cancer was setting up a calendar online (like a forum) by a best friend of mine.  She let everyone at my wife's work, in our friends circle, kids friends parents, etc that we needed meals easily reheated for 4 ppl - this took so much off my plate to not worry about the kids, about myself, taking time away from sitting with my wife...it could be great assuming you have kids or a partner that normally expects you do so much but now cannot.  I just left a cooler on our back porch each day with a bottle of wine and a thank you card - this was a HUGE asset to help my family through.  It can be hard to ask ppl for help but they are wishing they could do something and they have no idea how hard it is, lean on them - ask.

yogygator

Squamous cell carcinoma of the nose

Hi there.  My husband has to have surgery this Friday to have his entire nose removed due to SCC.  It started in January and after several biopsies etc, the SCC began growing aggressively.  It was in part due to him having rheumatoid arthritis and being on a biologic, Xeljanz, whick knocks down the immune system.  He also has to have his prostate removed June 9 (cancer - but contained).  All of his scans are clear.  I am wondering if anyone knows or heard of having a new nose reconstructed?  He will be fitted for a prosthetic nose, but wondering if there is any possiblity that there is a way where he could have a new nose built?  My heart hurts for him.  TIA.  

HobbsDoggy

Might want to try a new Post

I sugesst a new post so it is clear you are asking something entirely different.  That way people who have experience can answer.  You are in our thoughts and prayers.

dnelson964

another thought..

There has been much good advice here already. I am a Stage IV cancer survivor over 4 years now and still totally cancer free. Because mine was in my sinus I changed my radiation treatment to 1/2 radiation followed with second 1/2 being Proton. That helped minimize healthy cell damage or I might have lost my eye. I also started drinking Aloe Vera juice which is much easier to drink down when water if you get swollowing pain developing. In addition I added Vitamin D level check on my blood testing to see where my level was at. If low it is important to raise to near maximal level around 90 on scale. This will make your immune cells able to be transported easily to cancer cell locations and better kill cancer cells. To raise my level I took 10,000 IU daily for about 6 months to raise my blood level to high 90 mark on blood test. I was only 29 at the beginning. It is important to help stop cancer return after treatment is completed.

Best of luck moving forward.

Pclark21st

A couple of things to add..

A couple of things to add...be sure to get a port...you'll be surprised how often it will be accessed and will save your veins.  Also you'll need a good skin regimen.  They will offer you Aquafor which many have used but I wanted to use something other than petroleum so we went with Aloe, calendula oil and coconut oil.  Apply in that order 3-4 times a day.  We had NO skin issues.  Be sure to keep up with your swallow and neck exercises.  Be sure you're connected to a great cancer center.  It may seem daunting at the beginning but take a deep breath, make a schedule and begin your fight.  Good luck

Drivingdaisy

Best Advice I can give

I got the news I had SCC HPV 16+ just seeing an Ent for allergies & sinues.  He saw the tiny red spot on my skin where My left tonsil once was and I told him been there 3 yrs, asked every Dr they said it was just irritation.  Never changed in 3 yrs. Travels all over Europe, walked often 8 miles a day, loved eating out & good red wine no problems.  He asked if he could take biopsy......sure.  Came back Cancer. The beast had been unleashed.  Than he wanted another biopsy for HPV.  By that point a ting pimple size bump had developed & yes Positive.  No tumor, no lymp, from biopsies not much of the red skin left but he was concerned I had it 3 yrs so may be out of control needed to start treatments immediatel.  Didn't know much about this Cancer except told horrible way to die.  They did a Pet came back with 2 areas supposedly infected that ended up not being.  One was base of lungs.  I had had that for 3 years earlier than the spot yrs before & lung Dr & Surgeon watched it never changed, never got worse never a problem except with allergies.  They finally after all the tests for 3 yrs to go with diagnosis scar tissue from past bronchitis & pneumonia.  Still to this day was scanned in Feb 2020, no changes and they thought base on tongue for awhile but scoping every 3 months didn't see any & he did amazing scopes even filmed.  The 2 Drs I was referred too here in Sarasota Fl were basically it for Cancer.   Between all 3 pushing Me to start the barbaric treatment of 7 wks, 5xweekly Radiation & Chemo, 2 drugs, 1 x weekly and No real info thought they could handle My simple Stage 1-2 Cancer.  Boy was I wrong.  Overdosed Me & now 4 yrs later still horrible side effects.  So miserable wish I would never have gone to ENT.  So my advice go to a big Cancer Center well known with a big team approach, better machines, Mayo, MD Anderson, Cleveland Clinic get the best.  Don't know where My article is right now but JohnnHopkins came out with research proving. sCC  HPV 16+ only needs half of the normal tumor/ lymph Cancer in Throat treatments and they feel that quality is best for the patient.  I wish that had come out when I was DX in 2016.  went to Mayonhere in Jacksonville Fl last Fall and they felt horrible what has happened to Me & point blank said they would NOT have done such an invasive of treatment on Me & I would be eating, getting stronger no kidney, stomach/intestinal, low blood counts hearing & eyesite loss no saliva, I would be living not just alive.  I miss enjoying life with My husband & family.  I am bedridden now and only 62.  Can't eat out, travel, do sports go to beach since can't regulate body temp since they fried My thyroid also.  No life but tV, iPad & books for a life.  my advice.......go to good Center with big team approach, latest advances in treatments, explain you want to live but want to also be living.  Not existing.  Get 2 even 3 opinions & go with what makes you comfortable and the Drs.  Mine were not much at telling Me anything, lied about test results saying better than they really were which was first sign of the upcoming side effects for life, no pain relief or referral you will probably need it depending and try if they are gentle no feeding tube, I had one & had to learn to transition off.  I was burned so bad could not even drink water or talk why the feeding tube.  And last eat, eat, eat & enjoy every favorite food you can before you can't.  You will need the weight plus you may never eat that great food or wine again.  Why go to bigger, better Center than just local Drs.  I went from 140 to 97 lbs in 2 months 4-5 small shakes a day down feeding tube for nutrition.  This is not like any other Cancer, most of time can not surgically remove though Mayo thinks mine could have been with short dose of light Chemo.  So tiny and no tumor or spreading to lymph or elsewhere.  Other Cancers can eat, drink and have a life I've too many friends with just about every Cancer and they are all doing well & enjoying life.  2 I know with throat 1 died miserable and myself & another will from all the harsh treatment.   Please, I beg you, go to good Center & live your life Cancer free & healthy.  Please don't end up like Me.  Good luck to you and didn't mean to scare you if I did just don't just jump in and not know or feel comfortable with your Drs.    At least with teams you have allot of support.  Ever need to talk You have a great start here, wish I had found it sooner.  Just listened to Drs & no info so didn't know even where to start researching.  They don't want you to know for fear you won't do treatments or go elsewhere.  It's the treatments that they make their money.  My 2 were in Class Action Lawsuit settled for overcharging patients.  So more treatments, more money For them.  This is about you & what you want & how you want to tackle this.  Education is Power.  Good luck and we're here to help you if We can.  Read first thread, lots of good info.  Ask members for Center recommendations & Drs, many that have done well have gone to larger Centers, those of Us who stuck around our smaller town & didn't venture out having more issues with side effects.  If need be if you love your jobs& want to go back after make that your goal to do better.  If travel, food, music whatever make it your goal to do it after.  Be strong this is a Warrior crowd not just survivors.  Your a Warrior take charge and have susport!   Gentle hugs from 6 ft, Lisa (Drivingdaisy)

Drivingdaisy

Pclark21st said:

A couple of things to add..

A couple of things to add...be sure to get a port...you'll be surprised how often it will be accessed and will save your veins.  Also you'll need a good skin regimen.  They will offer you Aquafor which many have used but I wanted to use something other than petroleum so we went with Aloe, calendula oil and coconut oil.  Apply in that order 3-4 times a day.  We had NO skin issues.  Be sure to keep up with your swallow and neck exercises.  Be sure you're connected to a great cancer center.  It may seem daunting at the beginning but take a deep breath, make a schedule and begin your fight.  Good luck

Good recommendation

Wish I had.  Had great veins & they used one over & over for 7 weeks & Chemo damaged it Now between all the blood testing I have to do every 2 weeks, IVs, veins are about shot in both arms now.  Listen to advice these are Warriors who have been there & know the ropes.  Again good luck.  Lisa