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Mom just diagnosed

JanANem's picture
JanANem
Posts: 12
Joined: Apr 2014

I am writing this in the hopes I can get some opinions and feedback.  My Mom was diagnosed 6 weeks ago with cancer under her tongue and floor of mouth near her jawbone on the right side.  At the time the biopsy results were told to us, the doctor said it was definitely cancer and that she would need either surgery, radiation, or both.  He is an ENT and so referred us to a surgeon and explained she would need what is called a fibula flap procedure and reconstruction.  My Mom, at 82 years of age, reluctantly agreed to go and talk to the surgeon as opposed to starting radiation treatments.  She was told that radiation would probably destroy her jawbone.  So off to the surgeon we went.  After examining her, the surgeon explained that he didn't think the cancer had spread to the bone but could not tell without a CT scan.  He explained the fibula flap procedure to her (mimimally).  I have since done much research and gotten the information on my own.  She was scheduled for a CT scan, pre-surgery testing, and another consultation with the surgeon to get the CT results.  There was also a question as to the results of her biopsy.  The pathologist had written down in situ but both the ENT and surgeon agree that the exam indicated this was not the case and it was not pre cancerous but cancer and possibly in the bone.  Very confusing to my Mom and myself.  When we went to the surgeon for the second visit to get the CT results, it was confirmed in situ, however the surgeon still recommends a 10-12 hour surgery for my Mom, with reconstruction of the jaw and a tongue resection as well.  This would include 6-8 weeks in rehab with the possibility of additonal radiation.   The CT results were "inconclusive".  The surgeon made the statement "We don't really need those results".  What?? 

We decided to get a second opinion, had all the records sent to an oncologist.  We were told that she did not need surgery but he could get rid of her cancer (his words) with approximately 25 radiation treatments and a few sessions of chemo.  He said the surgeons were to eager to do her surgery.  OK...now were are really confused.  So back to the surgeon and the surgeon says there is no way the cancer can all be removed with radiation and chemo.  We feel like we are in a tug of war and stuck in the middle.  But the bottom line is that my Mom is 82, has Celiacs disease which affects her immune system, (when under stress, the risk of an attack is greater...when my Dad was ill, she got down to 85 lbs. and ended up in the hospital herself).  She weighs in at about a hundred pounds now, says she prefers to let "nature take it's course" and has decided not to do anything.  I am so afraid for her and don't know what to do or who to turn to.  She is of sound mind and can make her own decisions.  I want to support her and be there for her in all of this.  She is active, eats well, works around the house and outside and looks so good for her age.  The surgeon has now told her (after the pathology report confirmed in situ) that she can wait if she prefers but the cancer will eventually develop and spread.  I am going to find another oncologist to take her to...that will be able to care for her for the duration and one that will offer palliative care as well as the possibility of a referral for surgery should she change her mind.  I hope this is the right thing to do for her because I don't know what else I can do for now.  Thanks for letting me vent and tell my story.  Any feedback would be appreciated.  I have been reading some of the posts in the discussion boards and am amazed at the courage and determination some of you have expressed.  I can only hope my Mom and I have the same. 

CivilMatt's picture
CivilMatt
Posts: 3346
Joined: May 2012

JanANem,

Welcome to the H&N forum, so sorry about your Mom, but it sounds  like you know a lot already.

Any way you look at it, this is a tough and complicated decision, with the type of cancer, your Mom’s age and her existing condition.  Any one of the treatments you mentioned can be rough.  You need some real smart doctors with your Mom best interest at heart.  If she was 60 and in good health I say give her the works and take care of the cancer and I am tempted to say that at 82.  

Anyway, find the best doctors, get a second and third opinion for the ENT, rad onc and chemo onc.

Good luck,

Matt

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

Hi,

Your mother should be trilled to have you along for the ride. You are very well informed on most of the main considerations. One thing that makes the path forward is the age and condition of your mother. She is pretty light to start and everyone agrees chemo and radiation are frankly brutal therapies. Even the most healthy folks are hardly standing at the finish line. If unable to complete the therapy due to excessive side effects, the job is left undone and cancer likely still lurks. Plus your mother is in a very degraded state of heath and at her age as well all know the body comes back much more slowly if at all from trauma.

Quality of life is a consideration for all therapies. With elderly it becomes a more significant factor.

Having very different recommendations only makes the path forward more difficult. Typically, you see a surgeon and the answer is surgery. See an RO and the answer is radiation.

One thing to remember is cancer is only stopped cold by radiation and or surgery. Chemo kills micro cancer cells but if it is detectable then chemo is not a curative therapy.

Getting another opinion is a good idea. Make sure you find a facility that is a team approach so there is representation from many different backgrounds. Make sure your case is reviewed by a tumor board. Very few here attend. We asked and attended. It was the most impressive and comforting and reassuring experience to be surrounded by a dozen doctors and specialists, each giving their perspective and supporting the doctor presenting the case or commenting what their concerns were. Fortunately, my case got a consensus on the recommended treatment plan and I never lost a night sleep or worrried for a moment if the path foward was the most appropriate for my unique situation.

 

 

wmc's picture
wmc
Posts: 1149
Joined: Jan 2014

Welcome and sorry you need to be here. You seem to have done a lot of research as well and that's good. I would agree with the others and you might want to go to a hospital that has a tumor board. They have all the doctors talk and decide what is best and they all have to agree. That is what worked for me at least. Try to go to a large known hospital. Go for the best thats clost to you.  This link might help.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

Best of luck 

wmc  Oct 2013

Ladylacy
Posts: 586
Joined: Apr 2012

I am so sorry to hear about your mother.  My husband was been thru 72 radiation treatments, 10 chemo treatments and major surgery for laryngeal cancer and then a second primary at the cervical of his esophagus.  He started his journey at age 73.  His overall health before this was good so that is why he decided to go for it.  The treatment for head and neck cancer is hard on anyone who has to undergo it regardless of age.  We were told upfront how hard it would be and that many didn't finish treatment because of the side effects.

Last year when we found out that his second primary was back and spread to his right lung, he decided to do nothing further and said he wanted quality over quantity.  Neither our sons nor I and for that fact his doctors, tried to change his mind.  In fact the doctors all thought he was making the right decision.  That was 15 months ago.  None of his doctors gave us any timetable.  He has been on hospice for the last 8 months and is doing so-so. 

Guess what I'm trying to say is that this is your mother's decision.  Too many try to talk their loved ones into something they don't want and did then don't get the outcome they wished for.  I know it is hard, believe me I know but it is still your mother's decision in the end.

Also did you seek the opinion of a head and neck specialist and a cancer center who has done a lot of this type of surgery?  Our oncologists flat out told us when my husband's second primary and spread occurred that the only thing would be chemo and all that would do is prolong and possibly hasten his time left.   Our head and neck specialist ruled out surgery for the second primary and that was in his field of expertisee.

I have said after watching what my husband has been thru and meeting and talking with other caregivers and cancer patients, I don't think I could do what they have gone thru.  Cancer is a beast but then too is the treatment.

Wishing you both the best -- Sharon

JanANem's picture
JanANem
Posts: 12
Joined: Apr 2014

Thanks to everyone who responded to my post.  I appreciate you all taking the time and truly needed others opinion.  I have felt overwelmed lately.  My brother has pretty much left it up to me to handle all of it.  He has some personal problems right now, works 7 days a week...etc etc.  I am ultimately leaving this decision up to my Mom.  I just want her to be informed and educated on all aspects concerning her choices and options. (she isn't very pro active in all this and depending on me and the doctors for information)   So it is up to me to provide that information and whatever she decides, I will support her. 

I like the idea of a tumor board.  Had never heard of that...(Thanks donfoo and wmc).  Actually...the link that wmc provided has the hospital listed where the surgeon has his practice.  I am wondering if my Mom would be willing to go again if I were to call them and ask for a tumor board.  And does Medicare pay for this?  That is another concern I am having...If we keep getting other opinions, how long will Medicare keep paying?  We've already been to get 2 opinions, one from the head and neck surgeon and one from an oncologist who wanted to do rad. and chemo only.  Will Medicare and her supplemental insurance pay for a 3rd opinion?

So that is where I am at now...searching for another oncologist for a 3rd opinion and long term care (unless she changes her mind on the surgery and/or radiation.)  Thanks again to everyone and the very best to you all in your journeys during these difficult times. 

 

 

PJ47's picture
PJ47
Posts: 355
Joined: Sep 2013

It can be very confusing when different MD's have differing ideas about treatments.  Like you have stated, ultimately it is your mother's decision and with her immune issues quality of life is an important consideration and aggressive treatment may not be the right course. If she is agreeable, perhaps you could find a large cancer center/teaching hospital that could review the pathology report for you which could give you both more peace of mind.  The long term care may not be needed for some time unless she has surgery or radiation.  Give it some time and you will find the answers and allow for the shock to subside.

 

PJ

Ladylacy
Posts: 586
Joined: Apr 2012

You can call Medicare and ask them and if your mother has a supplemental plan you should check with them also.   My husband has a Medicare Advantage Program and I was always doubling checking a lot of his treatment and making sure that approval was given for a procedure.  Remember if Medicare doesn't approve, medicare doesn't pay and neither does the supplemental plan.  Radiation and chemo are both very expensive.  Of course, surgery is too.

Your mother is lucky to have you.  When you see her different doctors you should write down questions you need to ask, and their answers.  Easiest way to remember.   Ask about a feeding tube and a port.  Both are easy to have done before treatment and if not needed easy to remove.

Sharon

 

GavinP's picture
GavinP
Posts: 83
Joined: Feb 2013

Hi, sorry you find yourself here.

From what I know about H&N cancer (and this is true of most cancers that haven't metatstasized  to be honest) the first line of treatment, once cancer is confirmed, is to cut and remove. How much tissue has to be cut and removed is down to how advanaced the cancer is, where is is, what it's pathology is, how aggressive it could eventually become, etc...

If the cancer is very big, is near a critical site (wrapped around a major artery for instance) or has spread beyond it's original site to distant organs then surgery isn't an option, but in the first instance, surgeons will always try to remove the cancer (or pre-cancer) before doing anything else. So, in terms of the original diagnosis and treatment option from ENT and surgeon, I would side with them over Oncologist.

It would be unusual, from what I've read about H&N cancer, for oral cancer to be cured with radiation and chemo alone (a lot of patients with early stage oral cancer never have chemotherapy, doctors tend to prefer surgery alone or surgery and radiatiotherapy in the earlier stages)

Now, in your mums case, because she is 82 and in poor health, there's an added complication in that the treatment that may cure her (extensive and brutal surgery) is going to be VERY damaging for her. That's not to say she couldn't withstand the surgery, but this operation/recovery would is brutal for someone half her age, so if she's had a good life and is comfortable with the fact that she is near the end of her life, I wouldn't hold it against her for opting not to go down the surgerical route.

That's not to say theres nothing to be done and she's just got to sit back and "let nature take its course" though. She still has the option of radiotherapy  (not pleasent, but do'able even at 82, IMO - Brachatherapy may be an option here, which is internal radiation seeds implanted into the cancerous tissue) and chemotherapy (which I would suggest should probably be kept back for if;/when things advance or spread)

These treatments could at least slow down the cancers progress by several months/years and allow your mum to have a good quality of life, at least for a time, but IMO, we are just talking prolonging the time she has left with these treatments, rather than curing her. For complete cure I think you would need to go down the surgical route as the key treatment option.

One other thing to keep in mind is that with the diagnosis so recent, your mum is going to be scared, frightened and in shock. How she feels about these treatment options now, may not be how she feels about them in a few weeks, once the initial shock has worn off. On the other hand, if she does still stick to the view that she doesn't want any treatment and is essentially ready to die, that is totally her choice and the key thing is that she doesn't feel bullied into treatments she doesn't want (not saying you would do that, but sometimes doctors and especially specialists/surgeons can talk at their patients rather than to their patients.)

This is all just what I've understood from the reasearch I've done into H&N cancer though. I've never actually had it myself, so others may take a different view.

Good luck and keep us informed. :)

 

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Gavin,  since you have "never actually had it" yourself, it may be difficult for you to understand the treatment options available for oral cancer and how therapies may work together or separately to provide the best chance for a cure.  Since you admit that you are posting "just what I've understood from the research I've done into H&N cancer", your "research" may be simply googled information with no peer-reviewed medical journal sources provided.  Please consider that such comments in this forum could lead to misinformation or confusion for newly diagnosed patients who come here seeking help from actual patients and caregivers who have had realtime personal experience with the treatments. There are many patients who have a very good outcome without any surgery at all.  My son is one of those who has fully recovered without any surgery.  His primary throat cancer was located on his aryepiglottic fold and he also had one lymph node involved.  He received 35 radiation treatments (5 days per week for 7 weeks) along with concurrent cisplatin chemotherapy (one day per week for 7 weeks).  The treatment was not easy but he survived and his PET scans post treatment have come back NED ... no evidence of disease.  He did not have any surgery at all ... only radiation and chemo ... but that does not mean that other patients will have the same outcome from the same therapy.  If some patients are determined by their medical treatment team to need surgery, it very likely has to do with the location of the cancer and the complications found at time of diagnosis.  For instance, if the primary cancer is located in a tonsil, then the patient's doctor may advise surgically removing the tonsil before beginning radiation and chemo.  But only that patient's medical team has all the information and expertise needed to guide that decision. That is why having a hospital tumor board reach a consensus about the best options for a given patient is so helpful to newly diagnosed patients faced with such difficult decisions.  Please be very careful about posting anything here that could be misconstrued as professional research or medical advice.  This forum is a wonderful place to come for tips about what has helped in dealing with side effects, reaching out for comfort and support, sharing kindness and concern when times get tough, and the sense of being among friends who understand.

 

KB56's picture
KB56
Posts: 283
Joined: Apr 2013

I was also one of those that did not have the neck dissection/major surgery but just had the right tonsil removed. As Gavin mentioned, mine was wrapped around a bunch of stuff in the neck and the surgeons considered it too risky and thought that radiation and chemo alone would do the trick.    The primary was my tonsil but it was stage 4 due to the number of lymph nodes impacted but they were all in the right side of my neck. I had 7 Erbitux treatments and 34 radiation treatments and so far so good in that I have had a couple of clean scans but am only 10 months post treatment so a long way to go before totally "cured".   Also, in all fairness to Gavin, I believe he is a cancer survivor and I have read a few of his posts over the past several weeks and his is very supportive in any opinions or suggestions he might offer.

However, at 82 years old I'm not sure I would elect to put myself through the treatment as it was tough enough being 57 and in really good shape. It would be really tough on her mother and I would find some doctors I really trusted, ask them the tough questions and see what they have to say. I didn't have a hospital tumor board that I was aware of but I know by ENT, Radiation Oncologist and Oncologist talked frequently about me and my case. I trusted them and the approach they were taking and followed their lead. As "T" mentioned, quality of life is important and there is no easy answer to the right solution here. The chemo and radiation (ESPECIALLY the radiation) was brutal for me and I can't imagine it wouldn't be really really tough on her mom, especially at 82 years old and underweight to start with.

I'm definitely no expert and I don't know what I would tell my mom to do in this situation, or if I were 82 years old, knowing what I know now, what I would do.   Mine was in my right tonsil and hers is in the floor of her mouth under the tongue.   The surgery sounds very painful and given that the radiation could potentially cause problems with her jaw bone (i worry about that as well) and teeth for sure, her recovery would be tough.

Jan and her mother have some very difficult decisions to make in a relatively short period of time and it's one that I hope I never have to make for my mom, or advise her along the way as I'm afraid I would be selfish and encourge her to fight anyway that she can and sometimes that may not be the right decision for her.

Keith 

fishmanpa's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

I'm sorry to hear of you mother's diagnosis. I'm jumping on the bandwagon concerning another opinion. This needs to be done at a Comprehensive Cancer Center. They take a team approach and the case is dicussed with a tumor board. All aspects of your mother's current condition and treatment are presented discussed with a room full of doctors. At 82, there is much to consider. 

You want to get an opinion from a cancer center that lives and breathes cancer every day. A CCC will have seen the most variety and treated more patients (successfully I might add) than a non CCC. It's worth the time and effort, even if you have to travel. 

I was treated at Johns Hopkins in Baltimore. We lived 2.5 hours away. The Cancer Society owns and operates several Hope Lodges near the major cancer centers where you can stay free of charge during treatment. 

At 82, quaility of life is important. I'd hate to see your mother make a decision without at least having the opportunity to hear from a certified "team" of experts. 

Here's a list of the top centers in the country. 

Positive thoughts and prayers

"T"

JanANem's picture
JanANem
Posts: 12
Joined: Apr 2014

Thanks to those of you who wrote in with additonal info and experiences.  After talking to my Mom , she is "sitting tight" on the decision NOT to do anything at this time.  Ahhhhhh, the frustration!  But I can truly understand and respect her decision.  She is 82, underweight and though she can still get around and do things for herself...tires easily.  Now I am going to try to get a 3rd opinion from a surgeon, perhaps set up a review with a tumor board and go from there.  I may not even be able to get her to another doctor.  But I will try because I must try.  But only to a point...I don't want to push her too hard or upset her.  The biggest fear I have is that she will soon be in extreme pain.  And I'll be helpless to do anything for her then.  She actually seems ready to except all this and leave it up to nature and God.  I am also going to look into talking to a social worker...My Mom is depressed and I'm not sure she is grasping all of this. If she is in denial, this would explain her unwillingness to do anything.  However, it may just be she truly is ready to let nature take it's course.  I don't know how to interprete her words and emotions.   I think she may need some counseling etc.  (and maybe me too).

Thanks again to all! 

debbiejeanne's picture
debbiejeanne
Posts: 3026
Joined: Jan 2010

jan, wishing you the best possible outcome.  praying for God to help your mom with her decision and to bless you with the strength to accept it if its not the one you want.

God bless,

dj

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

Your mom is very lucky to have you in her corner doing all you can to ensure she receives the best treatment and course of action that she desires. You know her condition best and seem pretty objective. I would have a serious discussion with the specialists: surgeon and oncologists and ask their honest opinion what kind of condition your mom is going to be in and impact of various side effects durinng treatment and through recovery. She may be depressed but she is wise just because she has seen life go by for 80 decades. If one thinks you are not going to bounce back and suffer a degraded living condition and put burden on others due to increased medical needs, she may be telling you her honest desires as hard as that is to hear and accept. Best to you as you continue your quest. Don

wmc's picture
wmc
Posts: 1149
Joined: Jan 2014

Just a reminder. So many have gone through this in one way or another, but we are all different. Her doctors will come up with a treatment for her, based on age, health, and other medical conditions. If you find a doctor you like and TRUST and BELEAVE IN. You will be just fine. Do to other conditions I have they could not do radation, they were afread I would not survive it. So I had only surgery for my larnix cancer. At the time of the surgery I was T4,N2,M0. I was lucky and it ended up only T3,N0, M0, and a laryngectomy and 86 glands removed. Prayers for you and your mother. 

There is quality of life to concider as well. Suport her dicision.

wmc

JanANem's picture
JanANem
Posts: 12
Joined: Apr 2014

Big thanks to all for the support and kind words.  After reading various posts at this website, I can only hope and pray I can muster enough strength, courage and patience to handle this when things begin to get really tough...Will I be able to deal with and watch my Mom in pain, possibly using a feeding tube, side effects and hallucinations from medications??  Right now is the easy part compared to what may lie ahead.  And why should she have to go through all this at the age of 82?  Seems pointless somehow.  I know that sounds awful!  She will not get the surgery....And she MAY not get any other treatment as far as radiation and chemo.  We have appointments in the coming weeks with a radiolgy oncologist and a medical oncologist.  They are going to want to set her up with a treatment plan.  I am hoping to look into Brachytherapy...I've been reading that the side effects aren't as bad and it can target the actual cancer site much better.  If anyone has any experience with it, I'd like to hear about it. 

 All records and patholgy report etc sent to the new doctors.  Will discuss with them the next steps.

But  I guess I agree with my Mom in a way...She keeps saying she has had a good life and to let it be.  Although it still feels like I must keep trying...How can I just do nothing? 

If my Mom continues to make the decision  for no treatment or surgery...I hope to plan for palliative care and support.  I'm wondering if the doctors will refuse to see her if she won't follow their plan of treatment and who I should go to for long term care?  A palliative care doctor?  This may be all I can do for her, besides just being with her. 

Thank you for listening...I'm glad I found this website and I have the opportunity to vent and discuss.

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

There is no easy or clear path forward. First, there is no reason for pain yet managing pain has side effects including becoming disoriented. This suffering - can it be avoided? Is it temporary? Many unknowns the doctors can not offer clear answers. If she refuses surgery which by the way generally has the fewest long term serious side effects and the quickest recovery, then she may likely refuse chemo and radiation, generally know to create more severe short and long term side effects.

ALL doctors will offer all known treatments, both pallative and curative. I've never heard of a doctor who refused to do something. They will always be there to help as much as you desire. The decision, well all decisions, lie in your mother's hands along with your support.

It will be hard but at some point your role will be to support your monther. That means ensuring she is as comfortable and receiving the best care for her situation. You need to embrace that and know you are doing everything and all possible to support her wishes. Don

wmc's picture
wmc
Posts: 1149
Joined: Jan 2014

What ever your mother does dicied remember, you're here on this site for suport. If you need to just vent, or try to understand what she might be going through, we're here for you as well.  Thought and prayers for you. I do think it is ofter harder on the caregivers and love ones because of the unknown. We know what we are going through, you only imagine and sometimes that worse then what it is.

wmc

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

Caregivers are often given the phantom treatment when it comes to receivng any support. It is natural for the focus to be on the patient and nearly all caregivers are left undersupported. My wife comments often now nobody asked how she and the kids were doing or how they felt or were coping. Now her nobody is not zero but certainly limited to only a few very close friends and immediate family members.

debbiejeanne's picture
debbiejeanne
Posts: 3026
Joined: Jan 2010

wow, don, that breaks my heart!  i don't remember you going thru tx but i don't remember asking others here how their spouse and family was doing.  that is really sad, from this point on, i will make sure i ask about them too.  thank you for pointing that out.

dj

GavinP's picture
GavinP
Posts: 83
Joined: Feb 2013

Another possible treatment option for your mum may be Photo Dynamic Therapy (PDT)

This is where a photosensitizing agent is injected into the patient to make the cancer cells sensitive to light. Then a light (usually laser I think) is shone on to the cancer site and the malignant cells die.

It can be especially helpful for elderly people because it's completely non-invasive and if your mum was a candidate for this treatment she should be able to have it done on an "out-patient" basis. It can depend on the type of cancer before it can be used, so it may not be an option in your mums case but I think it's worth looking into.

You can read more here

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/photodynamic-therapy

Regarding what her doctors will do if she refuse's their treatment plans. They will/should continue to look after her regardless of the whether or not she follow's their recommendations. Just because she's decided not to have treatment doesn't mean she won't need looking after carefully, especially if/when things get worse and she has to have palliative treatment, so please don't worry about this.

 

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