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damages from radiation

Armouredangel
Posts: 2
Joined: Aug 2018

Where I am from they pass out Cancer/Radiation/Chemo like it's candy.  the doctors etc. have no clue what they are doing. They are neither experience or trained in the issues and damages that occur from radiation.  You get NO correct diagnosis, No appropriate treatment or anything documented correctly. I have been to every site imaginable about the damages that arise from the radiation. I am getting totally blown off, told there are just somethings we have to live with, or maybe next time. (exactly in those words). This has been 5 years after radiation, 5 years of complaining about issues and not even getting acknowledged. So, I guess I am forced and in the process of treating myself. You would think that the Cancer Foundation would be taking the effort to help people with this problem but it seems to go as far as their treatment and then the damages are on you. The two biggest life destroying issues are the thyroid and the back of my neck. I can not hardly feel my arms or hands at all. Pins, needles, tingling, total numbness etc. across the back of my neck, through both shoulders, down both arms and into both hands. There has been guess after guess and nothing diagnosed or treated. During radiation I complained and cried about how bad it was causing pain in the back of my head and at the bottom left side in the back of my neck. Oncologist stopped treatment for a week. I stated that I was done I couldn't take anymore, and I was bullied into going back for another week. now, nerve damage, or what ever it might be is on me.. no one gives a damn. I was denied before care.. especially for blood work and my thyroid... now for 5 years I go from hypo to hyper to thyroid storm to coma like symtoms and can't wake up at all and still no correct diagnosis or treatment. Went to ER for blood pressure at 169/65.. and a constant up and down the whole time I laid there, they did nothing, game me nothing, even after being told I wanted copies of everything and every test, I got nothing. Right after ratiation I went to the pcp and requested blood work especially for the thyroid and tiredness etc.. what I got was fighting with 2 doctors at the same time and being straight up told "we can take the tests but we are not going to do anything about them"... and by God, they did not. With no diagnosis except for a TSH level only, they threw me a pill (levothyroxine) that has done nothing but make me ill.  I am seriously appauled about the fact that "damages" from radiation or even Chemo are not in the mix anywhere for aftercare... you can't get answers or help or a doctor to care at all. Anyone that can tell me anything would be greatly helpful. Please do NOT tell me to go find another doctor.. they are not getting paid to cure you, or even treat you accordingly.. and we have none that will. 

ERomanO's picture
ERomanO
Posts: 137
Joined: Feb 2019

If you want to get some replies you need to edit your post.  In fact, just delete everything and start out by introducing yourself (if this is the first time you've posted here), and let everyone know some of your specifics - the type of cancer you had, the location, the treatments that you received and any other pertinent information.  Don't bother going into a tirade about doctors because it really isn't going to help you at this point.  Ask a question or questions here that are somewhat specific because saying "Anyone that can tell me anything would be greatly helpful" isn't going to get you many (if any) reasponses.  Just calm down and create a "discussion".

I get what you're saying about your neck. Mine is kind of screwed up too - stiff, sore, creaky and makes grinding noise when I turn my head.  But I knew it would be messed up before I ever started my treatments... that I would have to stretch my neck every single day in order to keep it from becoming permanantly immobile.  Your description of the pins, needles and stinging going from you neck through your arms sounds like neuropathy.  When my neuropahthy first showed up it did sort of the same thing - radiated from my neck and down my arms - but now it's settled in my hands and feet.  I started taking Gabapentin a couple months ago and it helps control it.  Have you ever asked about that?

If everyone has told you to get a new doctor, then maybe you should.

I'm sure we've all gone through the whole being "pi$$ed off at the world" at the onset of dealing with the aftermath of treatments, but I would say that just about everyone here, regardless of how easy or awful they have it, is dealing with their situation in as calm and  thoughtful manner as possible.  Being a basket case isn't going to help you.

You should go through and read some of the earlier posts here, that might sober you up a bit and make you at least a little thankful... and that might help you get some good advice here or elsewhere.

wbcgaruss's picture
wbcgaruss
Posts: 394
Joined: May 2018

And after effects are something we have to deal with. Like most all of us, you are dealing with a variety of treatment side affects. The doctors can't lay out everything that you will have to deal with during and after treatment because almost no treatment plan is the same and each person has different outcomes. Some on here have nearly regained saliva but still, lack some taste. Some have bad neuropathy, some a little, some not at all. I think your medical team was probably trying to give you the best treatment with the least side affects and still eradicate your cancer. You are dealing with what they call you're new normal. None of us like it but if you have a lot of problems I recommend make a list and go in to see your family doctor or oncologist or chemo doctor whichever you feel is the best place to start and go over the list with them and start with one problem at a time and try to eliminate it or at least make it easier to live with. Calm down and deal with this sensibly berating all doctors and the medical establishment does not help. We were all on here presented with a treatment plan when we had cancer and it was a choice of life or death so we chose life even though we knew it was going to be rough. My oncologist nurse told me straight out "You might as well figure a year off your life dealing with this counting the treatment and recovery". I'll tell you your not alone here a lot of us have many of the things you have going on with us also. Hey, we are all here because we want to help and support and get support so please stick with the forum, and get back and see your docs and start dealing with this stuff it is not going away anytime soon. And below is a poem a lady in our local support group wrote that has had her share and more of cancer hope it helps you and others---

 

The Tree

I walked in the woods, feeling lost and alone,

Soon I grew weary and sat on a stone.

I thought of my upcoming surgery,

And the path ahead looked dark to me.

The wounds, the pain, the scars, the knife –

But I had to go through it if I would choose life.

My eyes were drawn upward by one young tree,

Something about it seemed special to me.

About halfway up, the tree had been marred,

Perhaps in a storm, it had suffered a scar.

Beyond the scar, the tree kept on growing

Onward and upward, as if it was knowing

That nothing could stop its quest for the sky.

It had survived – and so would I.

So there in the woods, with God and the tree,

This realization came to me –

I will get past the pain and the scars,

I will grow upward and reach for the stars.

-Jane Nicholas

 

 

Kleberj
Posts: 2
Joined: Mar 2019

In 2016 my brother was diagnosed with squamous cell carcinoma of the neck. He was in stage 4. Luckily it was confined.  For two months he received chemotherapy four times a week and radiation five times a week. Before treatment he was advised to have 13 teeth pulled out in order to avaod jaw reconstruction. He did. Now the rest of his teeth are rotting away because of the radiation. He went to the dentist and will most lily have to have some implants and bridge work done, or go for full dentures. His insurance company (Medicare with a supplement) has denied him any help and are sending him the paperwork to start an appeal. Obviously it is difficult for him to eat. Has anyone ever experienced this problem and have had success with getting coverage through dental of medical?

ERomanO's picture
ERomanO
Posts: 137
Joined: Feb 2019

Search through previous topics and you'll be sure to find posts on just about any type of effect from treatments.  If you can't find an example of your brother's condition it's best to start a new topic that is specific to your/your brother's concern.  This topic of this thread - damages from radiation - is so general, and the OP so vitriolic that you may not get many responses here.

If you have any questions on how to search or how to best contstruct a new topic, please feel free to send me a private message and I'll help as best I can.  There are many members here that will help you.

dk52's picture
dk52
Posts: 11
Joined: Feb 2019

Kleberj - My experience is the same as you described.  Basic Medicare does not help with anything you mentioned, implants, bridges, or dentures.  You can get a supplemental dental plan from companies like Humana which will cost about $20/month and I think they will help with dentures, but not implants.  I'm not sure about bridges.  I don't think there are any restrictions for preexisting conditions.

CivilMatt's picture
CivilMatt
Posts: 4597
Joined: May 2012

Kleberj,

Welcome to the H&N forum, where talk about teeth is something to smile about.  Not because Matt will make a lame joke, but because the teeth (your teeth, the cancer patient’s teeth) are front and center as one of the most discussed subjects on this forum.

I do not know if your brother’s cancer was confined? Usually, a stage IV diagnosis, points to a (sometimes small, sometimes large) spread of the cancer.  The staging also refers to the size of the “found” cancer.  For me it was stage IVa, SCC, BOT, 1 lymph node, HPV+.  It was the lymph node involvement and the size of the cancer which gave me a stage IVa designation. 

The rads are not guaranteed to promote the “rotting away” of your teeth.  In most cases, the prospective cancer patient has (sorry) “bad teeth” (for lack of a better description).

My rad oncologist spoke directly with my dentist and he gave the all clear for me to go through my 35-rad sessions and to keep all my teeth as they were healthy.  Now at 7 years post my teeth are still pulling their weight and chewing my food and smiling at the people I speak with and (knock-on-wood) they are all still OK.

Many, many H&N members on here do lose many if not all their teeth prior to treatments or a short time post treatment. Almost all, must go through 20, 30, 40 or more dives in a Hyperbaric Oxygen chamber prior to any dental work.

Success with acquiring dental coverage for all the post cancer treatment work which may “need to be done” can be tough, but some on here have prevailed.

A few H&N members who have mentioned their teeth are (the ones with * by their names you might  send them a PM) listed below:

Arndog64, Christmas, CLRRN, ** DebiL6043, ** Denistd, ** Fisrpotpe, ** Fritz, ** Lorig01,  Meinken, Micmill, Metro22, ** MickeyD, Nidociv, ** pj47,  Postive65, ** SASH,  ** Tracylynn72,  Wolfen.

These members have seen it  and done it all in the H&N teeth department. They can most likely point you in the best direction for information.

Matt

 

 

johnsonbl
Posts: 183
Joined: Feb 2017

Unfortunately, there are some facts that we know about head and neck cancer that we just are going to have to live with...  1)  Radiation and chemo are often the best way to kill the cancer  2) Radiation and chemo, while pretty effective at killing cancer cause a bunch of shitty side effects that you will live with for the rest of your life.

They can cause neuropathy which is damage to nerves and can cause tingling and numbness...and there is little you can do about them besides physical therapy.  It can and often does damage your thyroid which can cause hypothyroidism.  Hypothyroidism is a pain in the ***.  It's easily treated with the little pill they threw at you but it takes some time and adjusting to get it exactly right.  Too much or too little and it can make you feel really, really crappy.  I'm struggling with that currently...  I don't know if my dose is quite right an I'm guessing that as I age it will continue to have to be adjusted.

It is also unfortunate that your doctors aren't helping you.  The only solution for that, though I know you don't want to hear it, is to find better doctors.  The best thing my doctors do is to set expectations.  They have told me flat out that there is nothing they can do as a general rule for the numbness...  Sometimes, we as patients expect too much from doctors and sometimes doctors, not wanting to disappoint their patients don't just speak the truth.  I too wanted my PCP to draw a TSH at one point and she wouldn't do it because I had only been on my synthroid dose for like 3 weeks and it takes 6 for the levels to stabilize.  When I finally had it drawn, turned out I was within normal ranges...

At any rate, good luck and hang in there.  I can sympathize...it's hard to be patient when you don't feel well.

Brandon

 

ERomanO's picture
ERomanO
Posts: 137
Joined: Feb 2019

Armouredangel, You've gotten some feedback, how about cominbg back and carrying on a discussion.  Or are you another "hit and run" poster?

Dave K's picture
Dave K
Posts: 78
Joined: Mar 2019

No excuse for Dr.s to treat patients the way the Poster describes. We all deal with side-effects from the Rads over time. I was ticked at my PCP when I recently told him my swallowing is getting more difficult and frequently cough when eating/drinking. Figure it's the scar tissue around esophagus opening, but he  just blew it off with advice on making adjustments. Almost 10 years out, its been 6 years since I went to the ENT, and might be my fault for not suggesting a referral. Still, the Poster's Dr.s, if what was written is true- no excuse for dealing with a C patient that way.

dnelson964
Posts: 13
Joined: Nov 2017

I am also a stage IV treatment survivor. Much good advise given here already. Yes we each must look for answers from others and even on the internet until you find some for your exact problem.

For posterior neck pain and arm radiation tingling/numbness try using ice compression to back of neck while lying on a pillow for 30 min. If it help continue every 2 hours for a few days. Also if you have never been to a chiropractor a good one might help you out alot.

Remaining post radiation throat, mouth pain etc. might try 5mg Methadone and 300mg gabe pentin 2x-3x/day from a pain specialist. No drowsiness assciated with these two in general.

I have been thru these and this was what worked for me. 

Good luck

 

tommyodavey's picture
tommyodavey
Posts: 674
Joined: Nov 2011

We get it.  Some people ask a question and then forget about this forum.  They may, or may not return.  It really doesn't matter because the subject matter will benefit many others suffering from the same dental issues.

No sooner do I pay for a crown then I need a bridge.  Two payments left and now a partial is being made for me.  I believe all people of a certain age deal with dental problems regardless of having rads or not. 

My rads have not affected my teeth yet. (6+ years out)  The problems I've faced are due to gum recession from flossing everyday like they told me to do.  My gums healed and pulled up tight, exposing too much root of my teeth.  No good deed goes unpunished.   My parents dealt with the same thing so it's hereditary IMO.

 Paying off a dentist for the rest of my life seems likely but it beats complete dentures so no complaints.  A lot of people here weren't so lucky and ended up with dentures after the rads destroyed their teeth.  See above list of those who have had issues.

CivilMatt's picture
CivilMatt
Posts: 4597
Joined: May 2012

tommyodavey,

I will have to put you on my teeth informational list of H&N members.

Matt

pakie
Posts: 9
Joined: Mar 2019

5 months since Ihad radio therpy of the voice box got bad cough at night Also musac in my throat .Can anybody please tell me if this will go in time or stay with me forevar 

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