My brother is in Houston this week for checkups. As soon as his main doctor walked in he noticed bumps on David's neck - I had not seen these. His wife said they started a few days ago. The doctor asked if he had more and David moved the strap around the trach to show 5-6 more. My sister, who is down there with them right now, said they looked like big red mosquito bites. The doctor was very straight with them and said there is a very strong possiblity this is cancer and did a biopsy. The results will be in Friday and I know I shouldn't worry until them, but the doc said the chance it was something else was very slight. I feel that, as a doctor who sees this in oral cancer patients, he is probably right. If it is cancer my brother has 2-3 months. What a blow. He had been doing well after surgery, but the last 4 weeks had lost noticable amounts of muscle mass and continued to be in deplitating pain. They are going ahead with the pain blocking shot tomorrow. He's doctor said it was worth trying anything if it could stop his pain for a little while and he could enjoy the time he has left. I'm trying to write this quickly, in between total sobbing breakdowns. Can anyone tell me what these bumps are? Do they mean cancer is somewhere else? They said his mouth still looks great, but he has a trach infection and LOTS of crusted junk and plugs in his throat. The doctor talked like, if these bumps are cancer, there is nothing we can do. Does anyone know anything about these bumps. Please let me know. I know it will do no good, but I always have to research everything to see if I can find even a glimmer of hope. I don't even know what these things are called.
You're help is greatly appreciated.
Tonya

Hi Tonya, I have copied and pasted an old post from a member of our forum that dealt with the same type of bumbs. I hope and pray for you and your brother. I have been worried about the continual pain he has been in and hope they can get it under control. I had the surgery your brother had and didn't suffer any of the pain he has been dealing with. Please let us know if there is anything any of us can do for you.


Author Topic: more cancer?
Christine
Platinum Member (100+ posts)
Member # 1061

posted February 24, 2004 06:53 PM
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Ok. I'm trying not to jump to conclusions, but today the doc gave me plenty of reasons to panic.

My husband, Scott, had more surgery Feb 21 (exactly one month after major cancer removal), which included a re-resection of bone in his hard palate area that had a positive margin and a skin graft to the incision area below his ear. The area that got a skin graft had opened up and gotten pretty nasty looking two weeks after the first surgery, so after it cleared up docs decided to do the skin graft since otherwise there would be a sizable sink-hole in his neck below the ear. Well, one day post-skin graft, these little bumps started appearing around the bolster covering the graft and nearby on my husband's jaw. By the next day (yesterday, Monday, Feb 23) the area had started looking weepy and the surrounding skin was pulling apart from the bolster. It looked just like it did the first time that caused it to pull apart (they then said it was a bacterial infection). I called the nurse and doc-on-call three times yesterday; ultimately, they both agreed that maybe my husband had developed a reaction to the bacitracin ointment I was instructed to keep the bolster moist with. But this morning the whole thing had deteriated at least 60% from just overnight, so we made the long drive to the doc's office for him to see it in person. He took one look at it, said it was not an allergic reaction, and ordered a biopsy--which was performed right then and there by a resident--because he thinks the bumps could be tumor. I asked how they could pop up so fast, and how could there be so many? And how could there be more cancer? He said it happens that way sometimes, but we have to wait for the lab results before we do anything more.

I could not bring myself to ask what this will mean about further treatments or more surgery (chemo and maybe rad are planned in a few weeks). I am hoping like crazy that he is wrong. Has anyone ever heard of this? The area I am talking about is the same area where the largest of my husband's tumors was removed; it is also just below the area that was radiated just a year ago.

So not only are we waiting for biopsy on the margin of bone removed from my husband's mouth, but also the "bump" they took today. Prayers, please!

Christine

Minniea,
Thank you for the information. I will try to find this conversation and see if anyone offered any answers or if there is follow up information from Christine. It doesn't look well for us, does it? I am trying so hard to be strong. David will be back from Houston tomorrow. I just hope and pray the nerve block they are doing today will ease his pain and allow him some quality time with his little girl this summer. I better go before my pain starts seeping through this message. It's just so WRONG. He's fought too many battles in his life to end here.
Tonya

Dear Tonya,

I am so sorry to hear about your brother. Life sure isn't fair sometimes is it? I will be saying my prayers for him. Just don't give up, keep fighting this damn disease! We are all concerned and here for you. Keep us updated OK?

Hugs,

Shelley

Dear Tonya
My prayers are with you both, I hope the postings on the forum give you the strengh to ask the questions that you dont want to ask.
Sunshine... love and hugs
Helen

Dear Tonya,

I will add David to my prayer list. I'll be pulling for him as well as many other members will be.
I hate this ungorgiving diaease!!!

Best Wishes, Danny Boy

Tonya, You're right this is just so WRONG. It's certainly a disease to hate with a passion, this disease. I am sending prayers that your brother will be out of pain and get to enjoy time with his daughter. And that you will find good ways for time with him too.

Nelie

Tonya,
I received a private message from a member of this board being very harsh and critical of my post to you and my offering you first hand knowledge on what you asked for knowledge about. I'm sorry if the knowledge on Scott scared you, it wasn't my intention.
Minnie

Minnie - I talked with Scott and to Christine before his death. He was a warm and caring person. While I am speculating, I believe that he would want anything related to his experience, even at this time after his death, to be used to help others. Christine is also someone that I believe wants good for others who follow in her husband's path. If Christine does see your post, my take is that it will not offend her. When she and I talked about the information that I had found for them about Scott's condition (which was not positive, and painfully reaffirmed that there were no medical options) they were grateful that I had been candid and honest with them. That particular phone call was painful for all involved.... and I remember the discomfort of it today like it was yesterday.

Yes it is always painful when we bring up the name of someone now gone. There are many that I was very close to and talked with regularly on the phone before their end. Reminding me of them is uncomfortable, particularly since in those conversations I saw myself in them so easily...that I could be exactly where they were at that point in time, and there was no rhyme nor reason why I was still around. But it was still important to help them during those last few days, to answer the questions that I could, to offer the inadequate sympathies for what was happening, though the best I could do, and try to help them through the process with caring but factual information, presented candidly. We must learn from the bad things that happen to people as well as the good, in the end both types of information help us all deal with our own inevitable path to a common end... Tomorrow or 20 years from now - via cancer or some other cause. I believe that your intention was to inform, and Tonya was candidly looking for both information and support, which you have offered her. I do not find anything insensitive about speaking of the conditions of one of our own who has left us too early. When it is my time, I hope that people find something useful in my posts that they can use after I am gone. I know that especially in the beginning, that references to me will disturb Ingrid and bring up fresh thoughts in her mind of a painful experience. But I also know that she understands that the greater good of spreading understanding and information is being served by such a posting. I think that whomever sent you the email hasn't considered all this, and when they do, they will find value in offering information to those in need of it, painful as it may be to remember those we loved and lost.

To Tonya, I do not know if your brother's condition is the same as Scott's, and you cannot read into the postings on these boards a medical answer. Because some bumps in one person mean one thing, none of those of us who have not seen the patient, who are not doctors, etc., can tell you exactly what this all means. These postings that contain "information" may not reflect your situation. Please keep that in mind and know that we all hope for the best possible outcome for both of you.

Minniea,
Please do not be sorry you referred me to Christine's messages. It was what I asked for. I want to know the situation, good or bad. Christine's posts to others even after Scott's death were insightful and compassionate.
I did a search and the first post I pulled up was when she had returned from scattering Scott's ashes at his fishing cabin. I did cry, but I've done a lot of this lately. My brother has been an outdoorsman, both hunting and fishing, since his youth. Until this disease took hold he spent more time outdoors than in. Scott's option is one I hope to have the strength to discuss with my brother. Christine also suggested having hospice come in as soon as possible. His doctors have suggested that as well. I have found some solice in the hope that they can ease this time for my family. From what I've heard from others who have had hospice in their home, they are wonderful. I need someone to help guide him and us through this time and make the last few weeks we have as good as possible and help David come to terms with what is happening. David said the last few weeks his little girl (who just turned 5) has been pulling away from him. I can't help but think she senses what is going on. Also, he has had a terrible infection in his trach and the smell permiates the house. In fact, he asked his doctor, "The smell is bad, isn't it? I can't smell or taste anything, but I can smell this." (Unfortunately they were unable to do the never injection because of the infection). This smell may be causing her to shy away as well - that and him having the trach and his not being able to talk to her or being strong enough to take her fishing and fourwheeling like he use to every weekend. I have hope that hospice can help us with this as well, and she can share this time with her Daddy.
So, again, Minniea, please don't second guess your decision to share that information with me. Yes, it was hard, but what part of this disease is not? What I found gave me hope that we can cope with what lies before us and that is what I desperately need right now, hope. Hope that his pain is eased. Hope that he can come to terms with this disease that is robbing him of his life and us of him. Hope that he finds peace.
Thank you,
Tonya