Has anyone experienced a skin metastasis? My dads back in the hospital after being home for 2 weeks due to an infection. I brought him in as soon as he developed a fever. The ER dr didnt culture anything but admitted him due to high white blood count. Hes being treated with 3 antibiotics. I thought he would be home by mow, but they biopsied two areas on his neck of concern. He has these little pimples that are flesh colored. I really believe some of them have gone away, but the residents here saying it could be a skin Metastasis...the dr hinted that this would be quite bad if confirmed to be so. I just dont understand... how does this happen? Whats the treatment and prognosis? I can't even find anything online to see what it would look like. Any help would be beneficial . Weve been through the ringer...

ConcernedDaughter

Sorry to hear about the rough time your father and family are going through.

Does it look like a rash? I wonder if it Could be some kind of alergic reaction from a medication he's taken or something new he came into contact with. Such as a soap, laundry detergent or lotion ect...

Prayers for a clear Biopsy.
Heidi

I had a metastases to the epidermal layer of skin in 2012 in level V on the neck. Cancer can go anywhere, so it is possible, not saying your fathers is, and the biopsy will confirm that, and if so, wether it is a metastases vs. skin cancer.

Hopefully it is just a minor reaction or related to the infection being treated.

Paul thank you for sharing. I just received a phone call that the results came back positive. My dads surgeon is away for the holiday and the covering dr said his only option is chemo because he just had radiation in july. Apparently chemo will keep the cancer at bay but it will eventually progress.

What treatment did you have for your metastis? Was it just one nodule or multiple? I see youve done radiation multiple times....did you experience inability to swallow? I wanna stay positive especially with it being new years eve, but im finding it difficult to do so. This infection is making him very swollen too...hoping that goes away soon.

Heidi you mentioned your mom is doing chemo...how is that going?

Prayer God will grant us a miracle because we cannot take anymore. 3 cancers in 1 year... vant be good.

I'm sorry to hear. I had the skin metastases while waiting for surgery and treatment in less than a month after another cancer, and my 4th cancer in a year, so it was just added on. My cancer at that point was no longer in the lymph nodes, and roaming about. I had a radical neck dissection, pec flap, skin graft, Intraoperative Radiation (IORT) during surgery, followed by 5 weeks IMRT radiation, and chemo with taxotere, and Erbitux. My swallowing was fine, except during Chemoradiation, mainly from mucocitis, thrush

Maybe get another opinion. There is always hope!

Wow, 4 cancers in one year? You certainly have been through a lot and seem to be doing well, which is great. I am sorry to hear youve been through so much though. I apologize for so many questions, but had you had radiation prior to that for the 3 previous cancers? Were the skin metastases removed during surgery? Have you been okay since? I just had a conversation with the radiation oncologists and they are hopeful that chemo will help....i sure hope so!!!

I am so frustrated because his CT scan showed no cancer but now this....I thought we were in the clear.

I had a mixed bag of treatments. Not all 7 cancers were with radiation as my RO at the time didn't want to do anymore at that point, and the same with chemo, but I did have several surgeries, one prior radiation and chemo alone by June 2012. One doctor, hospital change changed everything, and had more surgeries (3), IORT (2) and Chemoradiation thereafter (2) with IMRT and Protons since. That is where the doctors experience counts, while others may say no, and at facilities that can do it.

ConcernedDaughter

So sorry the hear these results. Hopefully your fathers cancer will respond to chemo . As for my mother she had 2 five day treatments of Cisplatin with F5U. My mother couldn't tolerate it . She became very sick and had to be hospitalized . A CT scan was done and my mothers cancer spread more through her neck even with the chemo .

At this point we are making a change. I have made an appointment with MD Anderson for this coming Monday January 5.

I feel that my mother has gone through 2 surgeries and taken 35 radiation treatments and 2 rounds of Chemo and it didn't help her at all . The doctors did what they could and the hospital was very nice BUT ITS TIME TO MOVE ON . When the case is complicated A Comprehensive Cancer Center is the best move .

I can't see the doctors steady pumping my mom up with different types of treatment and ruining any chances of getting a possible treatment that may work elsewhere .

ConcernedDaughter Is your father at a Comprehensive Cancer Center? If not then my opinion would be getting him to one ASAP . I have herd good results from MD Anderson and Head and Neck Cancers.


Best of luck and prayers to your father
Heidi

My dad is at a well known hospital in boston. It isnt a CCC but it is the best for head and neck cancer. I had a chat with another patients family who went to 5 different hospitals, including our local CCC and they wound up at the same hospital. I brought up the idea of traveling elsewhere, but my dad didn't seem up to it. We have plans to meet with radiation and chemotherapy doctors early next week. I spoke with someone yesterday and he seemed optimistic in that this just happened so maybe we can reverse it....i sure hope so.

Paul i see you are in NYC. Which hospital did you switch to?

Heidi, i am so sorry to hear that chemo didnt work for your mom. I hope MD Anderson is able to provide other options that help your mom feel better.

If it's a well known hospital in Boston, and best for HNC, it must be a CCC. Many just don't have that designation of being a CCC in their name or are listed by the above mentioned groups. A CCC is basically a hospital that uses a multi-modality team approach to cancer treatment.

I went to a number of top rated hospitals, and local private practices, hospitals. I was at Mt. Sinai, one of the top rated hospitals in the country, then switched to Beth Israel, which I found was even better, and btw, was not listed in the groups mentioned, but my doctors were well known, top rated. MSKCC didn't even want to consult with me lol. I'm now switching hospitals to follow my ENT practice to another top rated one in NYC, and listed in the above groups. Unfortunately, my RO went to Florida, but I have another one here at a sister hospital who did the proton therapy, and I can always go to Florida, if needed.

ConcernedDaughter

Sounds like your in good hands. Chemo does help many patients and your father may do very well. Every case is different . If my mother doesn't get any good results at MD Anderson then I will be moving on. I guess if you don't feel that good feeling with the treating doctors. Which I didn't . Then it's time to move on to other opinions .

Prayers for your father . I wish you and your family the very best.
Heidi

There are many top hospitals in the NY area. Sloan Kettering, NYU, Mt Siani and Beth Isreal are all excellent facilities. Off the top of my head Im not sure which are CCC's but I think at least Sloan Kettering is. A CCC is much more than a facility that uses a team based approach. It has been awarded the CCC distinction by the NCI (National Cancer Institute) by meeting strict criteria and works with research. There are also cancer centers (CC's) that have met many NCI guidelines to be recognized as top facilities. Bottom line is to find a team where you feel you will get the best attention are most comfortable, some place that will fit your needs and go with it. You can always opt for second opinions as situations arise.

Best wishes with everything!

MSKCC was designed #1 this year for cancer by U.S. News Report Best Hospitals Some others others are in the top 50 for cancer, top 10 or 20 for ENT. Others top paces not mentioned are NY Presbyterian, Lenox Hill, Montifiore, to name a few.

Anyplace can be called a CCC or CC. There are no trademarks, qualifications or restrictions for its use. As far as NCI designations, some may have qualified for one cancer, but not all, and has to do more with grant money, meeting other qualifications, and not their outcome of any cancer treatment, and some may have used their clout to get a designation.

NCCN has their own criteria for inclusion, and some on this list, around 28, may not be NCI designated and vice versa, but many are on the U.S. News Report Best Hospitals.

We just received some encouraging news that made me feel a little more comforted. The RO stopped by to see my dad and spoke with me via the phone this morning. He reassured me that they see this alot and its not as uncommon as thought to spread to the skin. He said they have a lot of experience in dealing with this and believes there are options available for my dad. The dr that originally delivered the news was a fill in for the surgeon that is away for the holiday and he had such poor bedside manner. This dr made me feel a bit better. Obviously no cancer is good and its not good when there's a recurrence but hopefully theres a way to stop it. I am feeling a little better with this news...my dad although weak now, is a strong man and I never say never. We will continue this fight.

That's good news, and encouraging. There is nothing like having trust in your doctors, which makes a difference in everything.

I agree. Its important to have trust and faith in doctors. We are meeting with the RO director on Monday...hoping to get good news. My dad was originally against a second round of chemo as someone referred to the side effects as "devastating."

Since his doctor is away, we dont know too much about the skin metastases. What i do know is that he has several little pimples where his trache used to be and by his ND incision on the right side (which apparently had a heavily involved lymph node).

By your post Paul I am assuming you only had one pimple in your skin that was removed? Doesnt seem like thats an option for us due to the big area he has it on. Do your scans show that your skin is now clear? I hope you dont mind the questions....i just havent found anyone else on here that has experienced this.

I woudn't say it was visible on the surface, but was palpable by me and the doctors from my last visit, a few weeks, so a CT was taken, and showed a metastases, which was to the epidermal layer of skin. The area removed in level V was about the size of a silver dollar on the skin, in addition too, the neck dissection incision, other cancer, I believe was in level lll, a pec flap to protect the carotid, have more radiation, IORT during surgery. Then Chemoradiation...IMRT, Erbitux and Taxotere, followed after 6 weeks healing.

My scan was clear 3 months post treatments, but had a recurrence 6 months later, so I had my carotid artery removed since it was now involved, IORT during surgery, followed by Proton Therapy and Chemo, Carboplatin.

I had clear scans three month, and 6 months after this last treatment. In addition too a head and Neck MRI, CT scan for unrelated procedures.

Paul

I noticed in your post that you had the Carotid Artery removed. This is what I'm afraid of with my mother since the cancer is also on my mothers carotid Artery. I've been reading up on that type of surgery and what could happen "Stroke,Heart Attack "scares the heck out of me .

We travel tomorrow to M D A. So I guess it's what ever the doctors say needs to be done .


Thanks
Heidi

Yes, it is risky. Even the temporary balloon occlusion, and cervical angiography testing, to see if you're a candidate for surgery is a risk. I had read 30% risk of stroke, 25% of death with the carotid removal. When my doctor told me pre-op of the customary risks, he said 5%. I was like that's good, better than I thought. Even still there are risks after. A nurse told me the doctor said he's a tough dude, and called me miracle man lol. That's why not many doctors do this or can do this surgery.

It's difficult to say if it is involved just by radiologic scanning with a CT or MRI. Most thought to be are not, and may be inflammation, fibrosis, mimicking involvement, which about 37-42% are. I had carotid involvement in 2011, and the cancer was scraped off, and alloderm placed on the carotid to protect it. That was removed in a subsequent dissection, and pec flap placed.

You're in good hands at MDAnderson. Good luck

Heidi, good luck tomorrow! Like Pauls says, you are in good hands.

Heidi my dad had his right internal jugular vein litigated and a branch of his carotid artery litigated during his most recent surgery. We knew he had involvement in a lymph node but because its close proximity to them, they done during surgery. We never discussed it prior but it was necessary. This surgery required a pec flap to protect the area and that also became the piece of his tongue that was removed. It made for a lengthy recovery (he was previously radiated though). My dad had high blood pressure and high cholesterol prior to this and he was put on an additional BP med and his existing increased. I asked the dr what this had an affect on in the future and he said not much. He had a really good flow on the left side which supplied enough blood flow to the body.

Good luck tomorrow at MDA. I have heard great things about them. I hope they are able to provide options for your mom. We too are meeting with the director of RO at MGH and will see what options are available for my dad. Praying for good news for both of us.

ConcernedDaughter

Thanks for the information. I was wondering when I read your post I noticed your meeting with the director of RO. Are additional radiation treatments being done. I was wondering if it could be done for my mother. I was told Yes by someone and then someone else told me it cant be done. I'm curious .

On a good note we arrived in Houston Texas today. Appointment time tomorrow at 2pm. cant wait because my mother has been suffering and has not taking any treatments in the last 4 weeks . I hope some type of treatment can get started soon.

Good Luck
Heidi

Todays meeting with the director of RO was not good. We found out theres really nothing that can be done for my dad. We can try chemo but the odds, scientifically, is against us. We are moving forward with a PEG tube and chemo as it's the only option. The RO wasnt very optimistic, referring to today being the best day my dad will ever have. His surgeon however stated that his scan from last week shows theres no cancer in his lymph nodes or his tongue and he may have a good response with chemo, we just never know . He thinks my dad will benefit from continuing with his swallow therapy because the chemo may reduce swelling and allow him to eat and talk better.

Its been a terrible day and I am angry. My dad was originally told he had stage 1 cancer and there was no way his cancer was aggressive enough for this. Now it looks like we are running out of options and that my dad is likely to suffer. I dont even know what else to say or do...

What awful news you were given. It is completely normal to feel shocked and angry. If this cancer has not spread to any lymph nodes then it must still be a localised cancer. Can they not do further surgery with reconstruction?
What about localised Proton radiation.
If this was us, I would be chasing another opinion and that would be from a top Comprehensive Cancer Centre.
I will keep you and your Father in my thoughts and prayers.
Tammy

I'm sorry to hear the bad news. Cancer is evil and all we can do is our very best to slay the beast. Most of the times we have the upper hand, sometimes it does. Don't lose hope as often what looks cloudy today may offer rays of sun in the future. Keep pushing for options that will help. Good luck.

Tomvonk

My mothers cancer never did enter the lymp nodes either. That's what's strange .
My mothers is confined to her lower left jaw and, cheek of face. It is in the neck area but when she had surgery her nodes were all clear. It does seem to be staying localized at this point . We arrived at MD Anderson yesterday and I will say they are jumping on this quick . By Friday we should have a plan . Hopefully .

Thanks
Heidi

I'm sorry for your troubles. From my understanding, the cancer is confined, localized, to the skin metatesteses? While it may be true that nothing else can be done besides chemo, which may be beneficial too, another doctor may say yes. As Tammy suggested, seeking another opinion for other options like Proton Therapy, and others like photodynamic therapy, which treats where light can go, just beneath the surface, can be done many times, in addition too, Brachytherapy, IORT, and surgery itself, as possible options. I have been told no in the past many times for chemo, radiation and surgery, but at later dates or with someone more experienced or specializing in these may say it is possible.

Good luck.

Thank you for your kind words and recommendations ...I'm not sure what I would do without this board.

Paul your recommendations are especially helpful. I will look into these additional treatments. I feel like I'm in a fog. What do i do first to get a second opinion? In Boston, many hospitals work collabortively. Can i do a phone consult? Who should i reach out to? I just feel defeated.

I know how you feel at a loss. Maybe ask your current doctors of any other treatments, where offered, suggestions. Sometimes they don't say directly to go here or there, elsewhere without asking. Some may say it won't work, as was my case with brachytherapy or refusal to do more radiation due to dose limit toxicities.

I also looked at all the top hospitals via the internet, see what they specialized in for head and neck cancer, who the doctors were, their background, mostly in my area, but other hospitals may give an idea of the latest treatments. U,S. News Reports Best Hospitals was helpful, had many links.

You don't have to be restricted to one area. You can stay at Hope Lodge, other housing, and go anyplace if insurance allows. Sometimes a visit to one city can enable a number of consultations.

I basically googled everything, went to various sites for trials, pubmed abstracts, etc.

Then I called the hospitals I wanted to consult with.

You can see in everyone's signature what treatments they had. Unfortunately, I didn't join here until 2012, and usually don't ask for advise on other sites.

I made sure or was in the process to have a copy of every scan, CD disk too, pathology, surgical reports, radiation plan, and in some cases copies of the pathology reports. I also made a time-line of my case being it was complicated.

The more information I had the better. It's a lot of work, but it helped me in a number of ways, and felt more in control, that I didn't have to accept what was offered, although that was an option still on the table, but could go elsewhere.

Sometimes time changes treatment options too. For a year I could not do further treatment, but physical,medical condition improved, I was able to do more, and doctors do take that, amongst others, into consideration.

I hope this helps

is surgery not an option? If it's localized wouldn't a graft be a possibility? I would definitely seek other opinions. hugs

Surgery isnt an option because the cancer is so thin on the skin and is coveting his entire neck. It isnt even showing up on scans...they only know from two hole-punch biopsies. I read alot about photodynamic therapy and it seems that it makes sense, but im no doctor. I am going to reach out to another CCC in the area and see if they have any other options for us, including proton therapy and photodynamic therapy. My dad starts chemo tomorrow, but i think they are writing this off as incurable. Unfortunately, this hospital only see 2 to 3 skin metastases each year with poor prognosis. I am trying to remain optimistic in the fact that its only in the skin and not in the lymph nodes or in any other organs. We are looking into clinical trials as well, but i am not sure if he is eligible or even wants to go that route.

Today our visiting nurse asked us if we wanted to setup hospice care which really frustrated us. My dad is healthy and stable. I get this is uncommon and ominous, but he isnt at that point. The doctor said there was a 20 percent chance his stage 1 cancer would become aggressive and an even lower percentage that it would spread to his skin. Those odds have not been in my favor, but hoping the slim odds that chemo woll get rid of it will. Theres always hope!

perhaps grafting if they decide not to do the photo therapy (which as you said sounds best) I had a small lump (turned out to be a clamp) on my neck showed it to my surgeon, he said - just a clamp - they're concern was with any possible rash - which thankfully - I didn't have. hugs and hopefully they do something fast.
has he had rads?????? I didn't see it in your info. Chemo is not always a good option. He might be better with rads if he hasn't had it yet.

hugs.

He finished rads in September which is why they are saying it isnt an option, because ideally that would be the next step. From what I gather from the MO, the chemo is to slow the growth down...buy us time I guess. Apparently my dads cancer is quite aggressive and didnt mind the rads because it recurred in his tongue and in a node pretty complexly. His surgeon seems confident that there is something that can be done, whatever that may be...

We already discussed surgery, he said it isnt an option. If it was one small area then yes, but its along his neck dissection incision and trache scar. I know chemo alone doesnt work with SCC, but heres to hoping.

Maybe the proton therapy... Push push push... as long as that is what he wants PUSH. Sometimes more creative options make a difference. Also maybe having the cancer tested against different chemos will help to see what is effective against it. HUGS!

You sound just like me! I haven't given up hope on my Dad, he was diagnosed in 2012. Had radiation & again irradiated this summer, a year after his previous radiation. Didn't stop it since it has metastasized to his hip bone & now scalp! He has 2 bumps on his scalp that are getting bigger. Dr's wanted to do a bone biopsy to confirm metastasis but we decided against it since I'm worried of it spreading quicker. My Dad argued with his oncologist last week and pretty much fired him. MO is head of the H&N dept here in Georgia at the best one in Georgia! So, we had gotten another opinion at MDA in Houston and now are trying to get him into a clinical trial there. So, I have faith that there is something else we can do. I'm not giving up and neither should you, but do go seek other opinions. His MO has the same clinical trial here and doesn't want to put him into it because he's not active enough. Yet at MDA they are trying to get him in. I'm just praying he gets in and he starts treatment soon! Praying for you & your Dad!
Connie

Connie keep me posted on the clinical trial. Hopefully he does well and starts soon!. I've read your posts before on your dad - glad to hear he keep pushing forward to find something for him. Right now my dad is doing a combo of carboplatin, taxol and Erbitux for chemo. He's doing weekly infusions over 4 hours and so far so good (fingers crossed). I know everyone says that chemo isn't a good option for OC but I am hopeful that my dad will be a miracle. We will see how this goes. In the meantime, the doctors are keeping an eye on any clinical trials he may be eligible for.

My dad had a skin metastasis on his neck but it doesn't fit the normal case where it grows quickly....it popped up quickly but thankfully appears stable. I inquired about proton therapy and other treatments such as photodynamic therapy but they are saying it isn't an option right now because this is a systematic issue although it appears local so chemo and immunotherapy are best. My dad has had a decent reaction with doctors saying it is better than they expected. He's experienced some nausea and mucositis thus week. Hoping things keep progressing forward.