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Noobie with questions!

KristynRuth's picture
KristynRuth
Posts: 25
Joined: May 2010

Hi everyone! I have been lurking for a bit and find these posts encouraging and very informative so thank you. In 2006 I noticed something growing in my neck and was told it was just a swollen lymphnode and not to worry about it. So fast forward to 2010 my "swollen lymph" had grown to the size of about a ping pong ball from the side of my neck. So I started going to a hospital to try and figure out how I could get it removed, because honestly it was embarrasing. They did a biopsy on it and found out it was a malignant tumor. So they jumped on the ball and did surgery May 5. I just felt like it was so weird, I'm only 23 it just seems like the "wrong" age range. I know that sounds bad to say, but it just felt like someone threw a book at my head. I was dazed and just couldn't even believe it was true. They removed the tumor, 20 lymphnodes, and my tonsils. Recovery was not easy, but I'm doing better. I'm still numb from my left ear, the back of my head, my left cheek and under my chin. It is the oddest feeling. They said it's Squamous Cell Carcinoma and the tumor is the secondary with an unknown primary. I'm also pregnant, so now they are inducing my labor so they can start me on radiation quickly. I'm bummed that I'm going to have to be doing radiation with a new born baby at home, but I know it's just what I have to do for the time being. Can anyone tell me the effects they had with radiation? I have read it is possible to lose your hair while receiving radiation on your head and neck. Is that very unlikely? Anything anyone would like to share I would love to hear. Thank you in advance!

sportsman
Posts: 98
Joined: Feb 2010

You are young and female. Seems like this cancer likes male and old a little better. In regards to radiation it will be tough. I'm not sure how they will do yours since you are pregnant. You need to consult with your doctor about all the side effects. Radiation did burn up the facial hair on my neck and it will not come back. It should not bother your hair. Chemo if given to support your radiation you may cause you to loose your hair. Good luck and God Bless.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad is half way through his radiation for tongue cancer and so far he is doing pretty well. His side effects so far have been a really sore throat, but he is lucky with no more then that. The people on this site have been wonderful with all of their advice. Do not worry about asking to many questions, believe me I have asked plenty. Read through some of the older posts, I have found the very helpful. I wish you luck and please keep us updated.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

In one way, you're awfully unlucky to be of such tender age and have to battle this beast.
But in another way you're lucky to be young and (presumably) otherwise strong and healthy. Treatment can take a lot out of you, for sure, and having to deal with a new baby at the same time isn't going to be easy. But, with a new baby you'll have yet another reason to live.
Hang in there.

--Jim in Delaware

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi KnR,

Sorry to hear you joining our club but welcome to a new group of friends here to help. If you get the radiation, it will depend on what type. I had and gather it's better, is IMRT (Intensity Modulated Radio-Therapy). It's a bit more selective. As it will be fired in a band around where your cancer was, that direct area may get some hair loss. I lost a strip around the back of my neck but it has all come back now (7 months out). Don't worry about the hair. Just use baby or neutral shampoos and cleansers while you are going through treatment.

You will most likely have some pain issues in the mouth and throat from the radiation, some mouth sores/ulcers, and loss of taste and maybe saliva. Make sure you write this down. Ask your doctors about 'Amifostine' which can be given before treatments to help protect your salivary glands. We have all had different levels of recovery of these glands, so do what ever you can to protect them. Losing Saliva can affect digestion and your teeth as well as being a bit of a nuisance.

I hope you can breast feed your baby for as long as possible as you know the first few months are important for the Bub to get mums milk. It may be a difficult juggling affair to do what's best but get as few opinions for these things.

It will be a bumpy road for a while but you can get through this. Keep in touch & let us know how you are doing and come back for more questions.

Regds
Scambuster

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I had a very similiar surgery a month ago. 40+ lymph nodes and tonsils removed. What did they find in your other lymph nodes and tonsils? I am also unknowm primary and they never found mine. They suspected tonsils but they were clean.
I thought I was tough BUT you went through surgery and you're pregnant? I can tell from your attitude that you are a real warrior and you WILL beat this thing.
If you don't mind I'm gonna be saying some prayers for you!

Take care of yourself,

Joel

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi KristynRuth, sorry to hear about your diagnosis, especially while you are pregnant.

I had 35 radiation treatments and chemo and I am probably one of the few people who can brag ;-) about not losing their hair while receiving cisplatin. The only hair I lost was a little at the very base of my skull at the end of the hair line. My hair was long enough that no one knew about it until I told them and it is growing back.

I guess I was lucky during radiation also as the only side effect I had that really bothered me was the fatigue. I would come home from treatment and sleep for hours. I know the fatigue will be harder for you with a newborn but you will manage. That's what new mothers do ;-) Hopefully you have a good support team who will be there to help you with the baby so you can get enough rest. It is very important that you drink plenty of water during your treatment and get enough to eat to keep your strength up.

There are many side effects from radiation but you must remember that everyone responds differently to treatment and you may be one of the lucky ones who have few or mild side effects.

Please keep posting so we will know how you are doing. There are many great people on this site who can answers most of your questions and concerns or post whenever you need to vent as many of us need to occasionally ;-0

Stay strong and believe.

Glenna

KristynRuth's picture
KristynRuth
Posts: 25
Joined: May 2010

Thank all of you for your responses I appreciate them!
Sportsman, I am sorry I left out the fact that they are going to induce my labor before they start the radiation, so my son will be about a month early. They are assuring me he'll be just fine, as a mother it's still nerve racking though. And I totally agree w/ you DelNative me being pregnant is the silver lining in all of this. I have a light at the end of my tunnel! I have something to look forward to through all of this.
Scambuster, thank you for all of those details, that helps me to get an idea of what I'm looking at. The Dr.s are telling me once I start radiation it would be in the best interest not to breast feed. I don't know if that's just their opinions or a fact. I plan on breast feeding those 3 days after I deliver until I start the radiation. I know it's not much, but it's something.
Joel4 they tested the lymphnodes and tonsils and all the other tissues they took out and everything came back negative. There is a small nodule growing on my thyroid, so I'm getting an FNA done on it to check out the status. They think it isn't a big deal though. Thank you so much for your prayers it means so much to me! And thank you for your words Glenna M.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Kristy,

To answer your original question I had both chemo and radiation.... As stated above also, with the chemo I didn't seem to have any permanent hair loss, but with the radiation especially the side of me throat with the higher doses, I have. I don't really have any hair (beard) on my throat that side, minimal on the other. I did have some loss on the back few inches of my neck also. Some of that has returned and I think getting a little thicker. But if it works that way in your case, you could easily let your hair grow longer without it being noticed anyways.

Good Luck & God Bless for you, your baby, and your family.
John

KristynRuth's picture
KristynRuth
Posts: 25
Joined: May 2010

Thank you so much John, it sounds like the hair loss should not be a big deal at all, and I feel a little vain worrying about it anyway, I know that should be the least of my worries. Thank you for your reply and God Bless you as well!

rozaroo
Posts: 667
Joined: Apr 2010

I am sorry that you hve to go through this & extra prayer's are sent your way. I am almost 3 month's post treatment for head & neck cancer. My treatment consisted of 38 radiation treatment & 3 chemo cisplatin. As far as hair loss your radiation technician can tell you exactly the location as to where you will have hair loss. In my case it was at the nape of my neck & my long hair covered it. No biggie at all. The chemo made my hair thin a bit but hardly anything at all. I cannot colour my hair until 6 month's post treatment because of the chemo.I see you are not having any chemo so you are fine. I wish you my best in your treatment & recovery & congratulation's on your upcoming new arrival! God Bless!
Roz

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

KritynRuth, I'm very sorry you have to go thru this. I do believe your young age will benefit you thru your treatments. As for hair loss, I only had 35 rad trmnts and no chemo. I lost (an still do) hair everyday. Especially when washing it. I still have enough that my skull is covered but it is very thin.
You will find you have many friends here who have been where you are or are still there. YOu will also find lots and lots of important info here. We will keep you and your family in our prayers. Take Care and God Bless,
Debbie

ps, if a doctor can't find the primary of cancer, how does he know there is one? I'm not trying to be funny or look stupid but I honestly don't know. Do all cancers have a primary and a secondary? It does seem as tho most people on here have both but when I asked my doc about it, he said I had no secondary. I've worried since I first joined this whether or not my docs are overlooking something. Any info that could help me understand will be greatly appreciated. Thanks all.

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

Debbiejeanne,

It's a very good question. My understanding is that this cancer does not start in a lymph node but it gets sent to lymph nodes. If you have it in a lymph node then it travelled there from somewhere else and if that spot of origin cannot be ascertained upon routine examination that you have an unknown primary.
I'm new to this and I'm not especially bright:) but that is my understanding

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Joel, thank you so much!!! It is good to finally understand what is meant by secondary. Take care.
Debbie

KristynRuth's picture
KristynRuth
Posts: 25
Joined: May 2010

DebbieJeanne I'm so new to all of this I'm not positive about the whole primary secondary thing, but Joel explained it well. That was my understanding too. So if they can't find the primary, does the radiation just kill it and then your done? How do they know you're cancer free if they don't know where the cancer is coming from? Just curious!

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

KrystynRuth,

My Doc said they radiate the whole area where it likely is. My doctor told me that there is a good chance that my body fought my primary off and that radiation may not be for me right now. He explained that you can only radiate once and he'd rather hold off on radiation until he can find the primary through regular exams or via scans. The tumor board at the cancer center agreed with him and suggested no further treatment at this time.
He said just a few short years ago they probably would have thrown the kitchen sink at it. I decided to go along with their suggestion and not do radiation. My doctor also said that if they find a primary in the coming months they can radiate at that time without affecting my prognosis. I'll be going to regular exams. Every case is different and the lack of capsular spread impacted their opinion.
In the back of my mind I still think I should be going through treatment right now and I'm not doing enough. This is troubling at times but I trust my team and I trust that God did a miracle and I'm free of cancer.
The idea of doing radiation with an unknown primary troubled me a little because if they don't know where it is or if it even exists what is the point in doing the radiation and how would they know if they got it?
Cancer is tough and there are sometimes no easy answers to these questions.
It's important to feel good about and trust your team.

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Joel4, very good explanation and I wish you all the best. You will be in my prayers as is everyone here. Keeping my fingers crossed that it is gone and stays gone!
Thank you for your reply.
God Bless,
Debbie

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi. My Dx was scc (squamous cell carcinoma) of unknown origin (occult tumor). I had 7 lymph nodes involved. Surgery removed over 30 nodes, and 7 had disease although there was no adhesion and only microscopic extracapsular extension (coming outside the lymph capsule). My prognosis is very good. I consider myself very lucky.

I wont sugar coat my experience. It was brutal. I needed some guardian angels around me to help me make it (this site, my wife, mother-in-law, and many friends). My wife organized the treatment schedule so that I was never alone. My mother-in-law stayed with us for 8 weeks to take care of the house and kids while my wife worked.

I lost hair from the radiation (33 sessions) but not from chemo (3x cisplatin). I am told it will be "several months" before the hair grows back (if at all). The hair loss is limited to a patch on the back of my head, more on the right (the radiation was concentrated on the right, where the lymph node was). I also lost facial hair on both sides of my face and can now only grow a mustache and small chin beard (I had a full beard prior to treatment).

From the start of treatment I have lost 35 lbs. I did not get a feeding tube at first, but because I could no longer swallow, I needed to get it toward the end of treatments (March 30) and will have it for a few more weeks.

Because I had an occult tumor, they did not have a target for radiation so they targeted my entire mucosa. My throat from around the height of my ear lobes, to my Adam's apple received 6600 grays (the measurement for gamma radiation).

It was hard, painful, and depressing. Not everyone has the same experience, but my suggestion to you is get your care lined up, get the feeding tube, and be prepared for a lot of days in bed. Stay ahead of the pain and do everything to avoid problems with mouth sores from thrush (my current problem).

You can read about my experience on my website starting at day 1 - http://www.justwrite.us - start at the bottom and work your way up. Hopefully it can help.

I would visit THIS site daily and post your questions, concerns, rants, vents, whatever you need. The people here have been where you are going or are there with you already. You will find the people here gracious and ultra helpful and uber caring. Visit this site often and it will help you deal.

Best,

Mick

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Mick, thank you for this post. I believe it is always best to be honest and not sugar coat so people know what they have in store. You're right we are all different but many/most of the side effects and problems are the same. I'm glad you had people around you as that is very, very important. For those who are alone, come here often as Mick said, we really may be able to help you feel better.
I'm sorry you lost your hair but I'm glad you shared that. I told my onco doc I was losing my hair due to rad and they said it had nothing to do with it. My hair has been falling out since my trmnts started and they ended 10/22/09. It still falls out in the shower and when I brush it. I knew it was the rad as it didn't do that before and now my hair is so thin you can almost see thru it...lol. Anyway, thanks, that makes me know I'm not going crazy.
Also, please forgive my ignorance but what is an occult tumor. I've not seen that before.
God Bless,
Debbie

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

An occult tumor is one they cannot find. The lymph gland has scc in it and those cells come from epithelial cells, like the ones lining your mouth, throat, etc. So the thinking is the primary tumor started somewhere in my throat (base of tongue, nasopharynx, etc.) and traveled to the lymph and that is typically how scc is found.

They probed and biopsied my throat and all that there is in there and found nothing. So they give it the moniker occult. They assume my body got rid of it naturally, but not before it spread.

Best,

Mick

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Thanks for explaining, Mick. I'm glad they believe the primary has already disappeared! Good luck and best wishes with the rest. Hang in there.
God Bless,
Debbie

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

I have been thinking of you..How are things going.
Stacey

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Kristyin, have not heard from you. How are things going?

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Hi Staceya, I am extremely sorry I have been gone SO long! My son decided he did NOT want to be induced and came all by himself 6 weeks early!!! So I delivered him and haven't been at work until just recently and I do not have a computer at home to use I come on here during breaks at work. I completely forgot my password and I have been so loosey goosey that I just created a new login/pw. But I am set to start radiation Sep 7! Thank you so much for checking on me, it means so much and again I am SO sorry it's been so long! I really appreciated all the advice from everyone!

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Kristyn, I'm glad you got to a computer to check in. Congratulations on your new son, and for delivering him yourself. Your sound very comptetent and self sufficient, but that's such an understatement I'm embarrassed to say it. I'm happy to hear you have a date for radiation start. I have a feeling you're going to breeze through, but come back here when you can for any help we can give.

best, Hal61

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Thank you so much Hal! Well it's easy to say I sound competent and self sufficient now, let us see how I do through the treatment, I might be a big ol' cry baby haha! I am so glad I could deliver my son w/o being induced also. It was the funniest thing, we have a joke that he didn't want anyone telling him when he was going to come out! I hope I do breeze through and I'll be done and it'll be over! Thank you so much for offering help, I'll take all I can get!

chantil
Posts: 13
Joined: May 2010

Insist on a board meeting with your radiologist, surgeon and oncologist. Get their comments on radiation side effects, and the recovery process ask all the hard questions. And continue to post here for support. best of luck to you and your young family.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Last Thursday I was back at Johns Hopkins for a routine scoping ("Now say "EEEE") -- everything was fine -- but I had to spend some time in the waiting room that had practically been my home away from home two years ago when I was undergoing treatment.
Seated across from me was a young couple. No way had they hit 30 yet, and I suspect they were in their mid-20s. The woman had a newbie patient bracelet on her wrist, so I could tell this was the very beginning of her journey down this road.
I felt so sad to see such a young couple having to go through this, my heart just went out to them. It's one thing for a guy in his 50s to have cancer, because I figure I did plenty of things along the way to earn it. But for anyone whose life is just beginning to wind up with cancer, that is just so unfair.
Forgive my ramble, but this hard-assed old newsman has gotten a lot more sensitive after having had cancer. Please, KrystenRuth, give your newborn a peck on the cheek from me.
Life is good.

--Jim in Delaware

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Let me say that everyone is different. And if you knew me, you would know that I am very different.

A unique side effect of head & neck radiation for me (or a side effect of the pain medication) has been that I have become very clumsy. (I was somewhat clumsy to begin with.) I broke several dishes, and knocked things off the store shelves while shopping. (Actually broke a bottle of salad dressing in the aisle.) The clumsiness grew gradually starting in the third week.

I don't think this will be a problem in taking care of your baby; but you might have to think things through a little bit.

My motto is that most challenges can be handled if a person is forewarned. And you may not experience additional clumsiness at all. I hope this post does more good than harm, really.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Aw, delnative, no one deserves this, young, old, or in between. But I will give my little man a peck from you!!

ToBeGolden, oh great that's just wonderful, I am already one of the clumsiest people you might ever meet, aside from yourself lol. But thanks for the tip, I'll definitely want to take that in consideration while handling my little one!

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Aw, delnative, no one deserves this, young, old, or in between. But I will give my little man a peck from you!!

ToBeGolden, oh great that's just wonderful, I am already one of the clumsiest people you might ever meet, aside from yourself lol. But thanks for the tip, I'll definitely want to take that in consideration while handling my little one!

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

When I finish my second treatment of Rad & Chemo I was so clumsy I could not walk through a door with out running into one side of it. I found a stuff called Ambrotose after a few months was able to walk and go back to work. I don’t know much about it but it is put out by Mannatech, great stuff, it really worked for me.

Take care

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Jim, I feel the same way regarding being more sensitive. I find myself either telling or texting my kids every morning to have a great day and that I love them. My wife is my caregiver and I find myself getting teary eyed every time I see her as I cannot explain to her how much I appreciate her. All she says is "you would do the same for me" and "i have been a Nurse for 28 years and this is all I know" The only difference is I am the Patient who happens to be her husband.

I spent allot of time in waiting rooms today and look at everyone sitting there and wonder what their story is. Twice today I stepped off the elevator to let someone else in that looked to have it a hell of allot worse than me.

Maybe Cancer brings out the good in people also.

Great comment Jim.

Best!!

Mike

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