My husband is concerned about the quality of his life after 30x radiation (Power 60) one salivary gland spared. What are the odds of having tighter skin around the neck?
He has a scar almost all the way around the bottom of his neck. His skin also feels numb and he feels intense pressure where the surgeon replaced his bottom left jaw.

What has your recovery process entail?

Thanks sophie

Hi Sophie:
I just finished my 35 radiation treatments last Friday. All during rads I used Aquaphor twice daily as has been recommended by both my RO and by people here on the forum. While my skin did sunburn up to a nice dark brown color, it never developed sores, cuts or even got tight or brittle. My heaviest rads were on left side, right side didn't even hardly change color.

Now, one week later, the darkest brown patches are going away some. I continue to use the Aquaphor and will until it all returns to normal skin color.

For your husband is it a scar because sores, cuts actually opened up and then had to heal, or is it just skin discoloration like I had?

You asked what are the odds about ... I think many of us have asked about odds of something happening or not happening, and while the statistics might be available that doesn't mean your husband will fit the statistics. That old phrase that we hear over and over here on the forum ... we are all different, what worked for one person may or may not work for you. In that regard I think statistics are only of minimal help.

As for salivary glands I think both sides managed to survive. Yes, I do have some dry mouth periodically, but it also isn't continuous dry mouth. I can swallow normally without pain though I do have a lot of sinus drainage that dries in my throat at night during sleep. I wake up each morning with what feels like a throat that has been coated in glue that was allowed to dry. A little warm water gargle after brushing my teeth begins to loosen it up and then being upright allows me to hack and spit some pretty gross looking stuff until I'm clear. It remains that way until lather, rinse, repeat happens the next night. I have often thought that anything that gross looking coming out of my throat every day has to be something bad. But, my doc says it's normal. My sinuses stay clear and open and I have no problem breathing all day and night long.

I did develop mucositis during last week of radiation and it's still with me today. I don't feel like it's getting any better, but the RO said it can be here for awhile. Thank goodness for oral lidocaine as even swallowing Ensure would be almost impossible without it.

I can't help you with the jaw replacement feelings of tightness, but I'm sure someone else here can.

I hope this is what you were looking for.

Good luck.

Tony

Wow Tony, you sound so positive and it does help to know what you went through, every experience shared is immensely important to my husband right now!

He wants to know what most people experience as in the secondary effects, what would be the 'norm' or what can be expected as a general rule? Right now he is sitting on the fence. He is contemplating going through or not with radiation. There is the risk of developing or not a secondary cancer or to go forward with radiation and face the potentially detrimental secondary long term effects.

The doctors have scared him unintentionally by not giving him an answer to what usually happens and warning him of the full range of life altering complications.

He has a scar from his surgery that already prevents him from tilting his head backwards and which feels like 'tight all around and pulling downward'. His surgery was two months and a little over a week ago on Oct. the 24th.

We were told today that the fibrosis in radiated skin develops over years. does the skin thickness/fibrosis usually happen to some degree and can it be very minimal in some cases?

The first focus of the radiation is all along his left jaw, from the front to the back, second area of focus is all along his neck and the doctor does seam concerned about the effect of the radiation on the already tightened and scarred incision line. He is doing Yoga three times a day and following the stretching exercises given to him by his speech pathologist every few hours. My husband already had one salivary gland removed during his surgery and the Radiologist sounded certain that two more would be lost. Is it really that certain in some pointed radiation treatments?

He has asked me what I would do but all I could do was share everything I know from what everyone has shared here. I have also let go of the dependency on statistics because all that information is so general and unspecific.

What is life like after radiation? Is there a way to live and somehow find peace and balance with all it can bring? And if anybody knows, how critical is radiation with a mandiblectomy and two positive lymph nodes?

He really wants to hear what it is like for others and I can not help him in that respect. I guess I need some honesty, I know that everyone can have a bad day or a bad week but what my husband is looking for is an overall enjoyment of life in the little ways that really matter like enjoying a social outing at a restaurant and being comfortable enough in his body that he will want to paint and focus on his career again. I know I am asking a very subjective and personal question but time is of essence in terms of my husband being able to make a decision he will be able to live with.

Are you able to make peace with all the discomfort and find a new way of being happy?

Thanks again for sharing, it means the world right now, tomorrow will be his second radiation treatment. He is sleeping pretty heavily which is a relief.
Love in the OCF, Sophie

One detail I forgot to mention is that my husbands skin/new gum tissue part of his free flap did not live. He did however have nice gum like healthy granulation tissue underneath the dead flap when the ENT pulled it out. The reason I mention this is because this new 'Gum' tissue is only a certain thickness.

Hello Sophie, I am sorry to hear that your Husband is not sure about whether to have radiation or not, due to the long term after effects.
All I can say is that time helps us all adapt to our new lives. What can seem an insurmountable challenge today simply isn't in a few months.
Kris and I never once thought not to do a recommended treatment. Radiation is often the key to ensuring no recurrence. Though in our case , that wasn't so.
Even now, despite the immensely life changing surgery Kris has had , with all it's after effects, we would both take this route again. Kris has a good life and enjoys every day.
It is simply about accepting the changes and adapting life to them. Your husband will be amazed at what he can cope with and at how he makes little changes in his life to cope.
For us , the decision was simply about ensuring that there was going to be a life.
Thinking of you both,
Tammy

Hi Sophie,

You are seeking advice about a very gray area of cancer survivorship - that being expectations on quality of life over the medium to long term. The specific situation you face is somewhat unusual in that one salivary gland has been removed and potential damage to others is likely. I suspect no one will venture to estimate the level of saliva production post tx.

Even if there is no saliva and he encounters all the side effects associated with this, he can weigh this and other potential side effects that reduce QOL against the potential of recurrence.

The primary question is how much better might he reduce the chance of recurrence by getting rads. Avoiding recurrence is generally first and foremost for most of us facing treatments. Kill the cancer and keep it away!

Secondary are QOL issues. At some point, usually after a long battle of repeated treatments and reduced QOL, one increasingly faces the balance of QOL against further treatment. This is almost always in palliative situations and each person at some point faces the inevitable outcome that the cancer has dictated and decides further reduction in QOL is not worth the benefit derived from more treatment.

It seems your husband is FAR from facing this scenario at this point and seems like the primary focus should be on survivability. Continue to ask and seek as much as you can from the doctors as to what their experience suggests as being the likely compromises and side effects he will experience and what the risk of recurrence are from passing on the rads. Hopefully that provides sufficient data to make an informed and comfortable decision.

Don

Hi Tammy(one of the interns who visited my husband was from New Zealand, she was a ray of sunshine, always smiling and so pretty)

I read what you went through to my husband and it gave him some confidence. I know my question was difficult to answer but my husband was so confused from all the worst case scenarios that the radiologist warn him about at two separate visits. You gave me hope and courage to tell my husband that we needed to focus on survival right now and that I knew he would do his best to manage any difficulties and that I would always be strong for the two of us.

Hi Don( I travelled along San Francisco bay in the summer of 2003, I was there with a friend visiting art galleries. The sun, the water, even the people sparkled brightly, it was almost too much to take in)

You braved my difficult if not somewhat existential question, and one thing I know is that my husband is a fighter, he wants at all cost to be with me. Somehow you helped us gain some perspective by breaking it into different phases of life and loss. He had his second treatment yesterday even though he still woke up last night filled by fear of the unknown and too many possibilities. Today he has gained conviction and decided to go through the radiation with a kick ass attitude. He told me not to worry, that he may be scared but that that too would pass.

Much love, Sophie

Hi Sophie,
I am honestly very pleased to hear that your Husband will do the radiation treatments. It is all about ensuring survival at this point.
You will find lots of information and support on here to get you both through the radiation phase of treatment and beyond.
Your Husband may be one of the lucky ones who sails through without many effects at all. If not, come here and we will all try to help. So many here who have been there and done that.
Christine generally gives loads of helpful and important advice for getting through this phase.
As for the long term after effects, well you just deal with them as they come up. Honestly, you just cope and adapt. I can honestly say that Kris's quality of life is as good as before cancer. We just don't think of what has changed because this is life now, and he does do all that he did before ( if you take out the eating / speaking differences ) Life is wonderful, especially with loved ones to share it with.
Your Husband is lucky to have a great carer in you, it will make this so much easier on him.
I look forward to your updates, take care,
Tammy

Sophie,
So much of the focus of QOL concentrates is on long term physical side effects. Rarely are the mental aspects discussed. In fact, many come out changed and with new and healthier perspectives on life and living, the human condition and their role in it, as well as many other aspects of the non-physical world. Speaking for myself, my mental QOL quotient is measurably higher than before cancer struck.

Don

Hi Sophie, as you can see from the many on here, there is certainly quality of life after any type of treatment. Much is based on how an individual chooses to face the various challenges. It looks like both you and your husband are on the right path for that.

As for the neck tightness, I also found that after my surgery. It gets better over time, although very slowly. Definitely keep up with all the stretching and physio, as that was the best assistance I had.

Best of luck to you!

I'm really touched, thanks for keeping an eye out for me, Tammy, Don, Tina! My husband has made the decision to push forward. He is finding this very difficult emotionally and it is new for me to see him strugle emmotionally. He says he is scared and feels down, so much so that he feels like crying all the time.

I know I went through many weeks on and off like this and I tell him its normal. He really hasn't let all his emotions out yet, I mean we did have some heart to hearts that left ys both crying in each others arms but this is different. I can be stronger because we are doing everything in our power for him to live and to be well. What a relief!

I love that I can turn to all you wonderfull OCF peeps, I am never alone, in fact I know I am surrounded by some very unique, profound people.

My hubby is better then ever in terms of his body, mind and spirit. I can't say enough times how blown away I am at all his courage and capacity for openess and love through all of this. We are changed forever and yes there is good that comes out of that much caring and compassion.

Many many blessings, Sophie