The Assertive Cancer Patient

Late Night E-mails

I'm not quite sure why, but the most heart-wrenching e-mails seem to land in my mailbox the middle of the night. 

Sometimes, like tonight, I'm awake and I can reply right away. Other times, I see it the next morning, and I wonder what the person did after sending a cry for help in my direction--did they go to bed and fall asleep, or did they stay awake, wondering or worrying? 

OK, enough of that. I'm freaking myself out here. 

Here is the e-mail that just arrived, from a parent--I'm not sure if this is a father or a mother--of a man with very advanced melanoma. 

My only son was diagnosed with melanoma in 2007 and it went to the armpit, lymph nodes, and then last year he was on interferon for one year, but after six months, last July was found to have melanoma in the pancreas.  He had the body and spleen taken out and was doing very well, gained weight, looked fantastic, and seemed to be back to his old self.  

He was going to take part in a study at Moffit and the day before he was due to start, last week, they found it had gone to the pancreas and is on both sides so the surgeon said it could not be taken out.  He is going to start on a trial this week at Moffit in Tampa, Florida, for 12 weeks.  

Are there any survivors of this dreadful disease? I am so distraught that I cannot think straight. He is in good health and has a positive attitude, but do people survive melanoma that has spread?

And here's my reply:

Hi--I am so very sorry to hear about your son's melanoma. 

But thank you for writing. I've CC-ed my friend Carver on this e-mail, because she is in remission after being treated for stage III melanoma, and she knows a lot more about the treatment side than I do. I think she can answer some of your questions. 

Your question is pretty straightforward: You want to know if he should go ahead with further treatment, if this treatment might prolong his life. 

From my perspective, as someone who has been battling active cancer for most of the past 11 years (breast cancer, now metastatic, plus melanoma), I think that you have to ask your son if he still wants to fight. If he does, then you can do everything possible to help him in that fight. If he is in good health and has a positive attitude, then I think there is hope. Without knowing the details of the clinical trial, if your son wants to do it, he should do it. 

I know how tough this is for you. I hope you'll stay in touch and ask any other questions that Carver and I might be able to answer for you, and also just let us know how you are doing. You are not alone. 

Jeanne

A Melanoma Gene?

I've had melanoma, only once, and it was very thin, so I tend to forget about my melanoma ... compared to metastatic breast cancer, it was just a little blip on my radar. 

 But I do find that melanoma news catches my eye, as did this story about a melanoma GENE, because it was the first I had heard of it. 

According to the article, 5 to 10 percent of melanoma cases may be hereditary, the result of a mutation in the gene CDKN2A (you might want to write that down).

The other thing that caught my attention was the statement that mutations on this gene also put people at increased risk of pancreatic cancer. My father died of pancreatic cancer, and I has always suspected that someday scientists would find a reason for my own personal "cancer cluster," even though at present they can't say all these cancers in my family are linked. 

Read the article: Genetic Testing Guidelines for Melanoma

@ Jeanne Sather 2009. 

Melanoma: A Great Quote

There's a great quote in a recent story about melanoma rates increasing in the United States: 

"Individuals of low socioeconomic status in our society are additionally burdened with health issues of diseases that too often are diagnosed later, treated incompletely and rehabilitated meekly."

That's from Dr. Jeffrey C. Salomon, an assistant clinical professor of plastic surgery at Yale University School of Medicine, talking about the fact that melanomas diagnosed among "disadvantaged people" tend to be thicker, which is not good. Thickness is an indication of how far the melanoma has progressed.

I especially love that "rehabilitated meekly." Indeed. 

The bad news for all of us is that melanoma rates are rising, especially among older men. 

I have a special interest in melanoma, since I've had it, and now get a checkup every six months to watch for any more melanomas.

Read the story: Melanoma Rates on the Rise in U.S.  

Why is melanoma increasing? Well, our heavy use of suntan lotion and sunscreen, which allows us to stay out in the sun longer without burning, is probably the reason. Until recently, sunscreens did not protect against both types of UV rays, A and B. Even now, you need to read the label carefully.  

See:   Here's an Irony We Can All Appreciate

@ Jeanne Sather 2009. 

Melanoma: Teri's Reply

Hi from Omaha. Please use the librarians in your area to hunt down the useful information for you (that isn't even available through Google)--it can help you when you need to make decisions regarding health care. As a librarian, all information I pass along to consumers must be discussed with their health care provider--you don't want a librarian diagnosing you! But I know we hunt down the REAL information. I used a consumer health service when I was diagnosed, since I was WAY too close to the situation to remain neutral when faced with personal stories full of non-information. My colleagues here at the UNMC library saved me from seeing all the crud and bad news, which helped me focus on getting better and on the way to life after cancer. Here is a page of libraries in California that serve consumers with health information: http://www.nlm.nih.gov/medlineplus/libraries/california.html Since you are newly diagnosed, go for the libraries associated with universities, rather than public libraries--you need to get the research information. If you don't find any near you, let me know--we are limited to only serving Nebraska residents, but I can make some phone calls to California and kick-start a librarian over there to work better with you (yes, I expect to get my tires slashed daily by librarians, so no worries). I know you said in your e-mail that you weren't thrilled with Kaiser, but the librarians there aren't the doctors, and I think that is one of the best libraries (let me know your take on it). UCLA has the NNLM library office that also may be able to assist your consumer health needs: http://nnlm.gov/psr/ - again, let me know if they disappoint or serve you well. Their job is to teach librarians how to conduct consumer health services, so they should know librarians that can help you. In the meantime, here is the MEDLINEplus page on Melanoma: http://www.nlm.nih.gov/medlineplus/melanoma.html , which includes links to non-commercial information. Until you get a librarian of your own, please use me--I can search to the limits of my abilities, and get you to the real stuff. I can also hunt down bloggers, when you want to see more of individuals' experiences. On a personal note--our family has its exchange connections, too. Our daughter was in Austria last year during my skull resection (with my good outcome, she didn't have to come home, but it was discussed). Due to the same operation, we were not able to accept two different exchange students--I had to concentrate on getting better. I know you are experiencing hard decisions at this time, but know that whatever you decide will be the best for your family. And if you decide to go to Sweden, let me know and I can hunt down health care places over there and find the best doctors in the field that will help you the most--no sweat. The world is still yours--that is what knowing Jeanne and a few other folks has taught me since the cancer diagnosis. Take care, and please let me know how I can assist your information needs. –Teri Thanks, Teri and Carver for helping me help this woman. 

See also:

Newly Diagnosed With Melanoma 

Melanoma: My Reply 

Melanoma: Carver's Reply 

Expert Patients, That's Us 

Teri's blog: Cheeky Librarian

Carver's blog: Carver's Sight or is that Site?

Newly Diagnosed: Another Message

Here's the latest e-mail from our new pen pal:

I live in Fremont, CA, and am under Kaiser.  What do you know about Kaiser's knowledge with skin cancer?  

I am very disappointed with my dermatologist.  All started several years ago back in the 90's.  I first noticed a very black small dot on the back of my right shoulder.  It was removed.  Then a few years later, the same kind of small black dot appeared on my upper right arm.  It was removed. At both times, I was told it was not skin cancer.   

A year later, I went back to my dermatologist because a growth appeared right next to where the last mole was removed.  He said oh it's just a scar tissue.  I said, “Are you sure because it keeps growing?”  He said, “Oh that's normal.”  That was back in 2004.  

Well now, four years later, a few months ago, this growth continued to grow and grow until it became ulcerated.  It became crusty, very itchy and bled.  I called my dermatologist and told him that I really think he should see me immediately.  His nurse said he was booked until Dec.  I said, “Please, I think he needs to see me now.”  I explained the condition.  Nurse spoke with the dermatologist and he said, “Oh she can wait.  She just has scar tissue.”   So I waited for more than a month to see him. 

 When I came in for my appt, he finally seemed concerned.  A week later, that's when I was told it was melanoma.  When he broke the news to me, he seemed to be defending himself by saying that it was not melanoma back then and it changed in between.  He also explained that I had none of the description of melanoma so that was why he didn't think it was. I really think it was melanoma the moment it started growing after the removal. So because of this experience, I don't have my trust in Kaiser. 

My daughters are 10 and 14.  I'm concerned about my 14 year old daughter because she has so many moles and she burns easily.  I've sent in a request to her Dr to please send a referral for her to see the dermatologist for regular and ongoing checkups.   

Carver, you are right to say that fear can be increased when I surf the Internet for more information, but yes, it helps to talk with others.  I remember on my first day when I was told that I had melanoma, I came home and immediately did research online.  I ended up having anxiety and became so distraught.  But knowledge and more information was what I craved for, in spite of feeling fear.  I like to know what to expect.

Jeanne, yes, I agree with you, to take small pieces at a time.  It's easy to become paranoid and think the worst.   I'm amazed at how many different emotions I go through.  One day, I'll be very angry, feel unfair and blame the Dr.  The next day, I'm in denial and say that the problem's over with.  One day, I'll feel optimistic and say all will be fine, but then on a very next day, I'm filled with fear and anxiety. 

I find myself struggling with whether I should continue to make long goals.   We had anticipated on moving to Sweden in Aug as an “exchange family” and stay for a whole semester until Jan 2010.   But now because of melanoma...I'm not sure whether I should cancel this plan or move forward with this. I will need to let my daughter's school superintendent know soon. All this is frustrating.  I feel like my life's on standstill, waiting to find out what's next.  I don't like this feeling at all.   Makes me feel I'm helpless and have no control over my life.

My appointment's tmw.  I will definitely let you guys know how it went.   I'm so glad to have found you guys online.   It does help to talk with melanoma survivors.  Gives me hope!

See also:

Newly Diagnosed With Melanoma

Melanoma: My Reply

Melanoma: Carver's Reply

Expert Patients, That's Us

Teri's blog: Cheeky Librarian

Carver's blog: Carver's Sight or is that Site?

 

 

 

 

 

Melanoma: Carver's Reply

Here's Carver's first e-mail to our new pen pal, a woman newly diagnosed with melanoma. 

First I agree with what Jeanne said and I also don't give advice but I am happy to share my experiences and information about melanoma.  I will say that surgery is often the best option for melanoma. Melanoma is resistant to chemo and radiation although new ones are being developed, and immunotherapies have some success with melanoma.

However, when surgery can remove melanoma most doctors will say that's the best bet. Radiation is sometimes used after surgery in the lymph node basin but not in most cases. In terms of instead of surgery, that is usually only done with melanoma if an area can't be surgically resected.

I have stage III melanoma because my sentinel node was positive. I had the groin dissection and have had moderate lymphedema but going to a clinic and getting massage etc. helped a lot with that and I don't have too much of an issue with it at the moment. The percentage with problems after the complete groin dissection are actually higher than after the ones removed under the arm so even IF you had the complete dissection, you'd have a good chance of doing fine. The percentage of side effects after the sentinel node biopsy alone are very low. 

http://melanomaresources.info/ is a site with a lot of information about melanoma treatments and includes most of my links (a friend who is a long term melanaoma patient set it up with her links and mine). That site also has links to online support groups but sometimes that can add to fear, although it can help to discuss it with others in a similar situation. 

Best of luck and feel free to e-mail me if I can help, Carver

See also:

Newly Diagnosed With Melanoma

Melanoma: My Reply

Giving advice: Expert Patients:

Expert Patients, That's Us

@ Jeanne Sather 2008.

Melanoma: My Reply

Here's my first e-mail to the single mom who is facing surgery for melanoma.

Hi, I just saw your comment on my blog, and wanted to reply by e-mail. I've also CCed Carver, who has had melanoma and knows a lot more about it than I do. 

First, you should know that I am happy to share information, but I don't tell other people what to do. So, I'll do that more than give advice.  

Where do you live? And what cancer center are you going to?  

Where is the melanoma--on your arm?  

I hear you about surgery. I will do almost anything to avoid surgery, but sometimes it's necessary. If you decide it's necessary for you, then let's think of some ways to help you get through it. I remember telling myself that I was afraid, but I was going to do it anyway. I'm not sure why that helped me, but admitting out loud that I was afraid but still needed to do it seemed to help. There are other things I do too, let me think about this one a bit more.  

I did have a sentinel node biopsy, for my breast cancer not for melanoma (I've had both cancers), but the procedure is the same. I had three lymph nodes removed, and there was no cancer, so the rest were spared. I am very grateful for this, because lymphedema can be a tough problem to deal with. 

One thought is that you prepare yourself for the sentinel node biopsy, which may be negative, and don't worry about having all the nodes removed until you know that your doctor thinks that is necessary. Worry about that problem then. Do you see what I mean? Breaking this up into smaller pieces may help.  

To the extent that I would give advice, I don't think you should leave cancerous lymph nodes alone, if your doctor does find that there is cancer in the nodes. But I don't know if there is another way to treat them--maybe radiation? Carver, do you know? What I would do is make sure your doctor understands how badly you need to be able to use your right arm for your work, and how much you don't want to have all those nodes removed, but then go ahead with the first step, the sentinel node biopsy. If it's negative, you're done. 

If it's not, you can look for alternatives, but also look for a really good clinic to help you with the lymphedema. Carver? Can you weigh in on this? Didn't you have lymphedema? Because I think it can be managed with massage and other methods. And you would need PT to get the muscles and etc. in your shoulder stretched out and strong again. 

If you can answer the questions above to both of us, we'll give this some more thought.  

Finally, I know how scary this is. But please know you are not alone. There are lots of us out here who are willing to help and to listen. So please take advantage of that. We can help you navigate this crazy cancer world and make it less crazy and scary. Also, I'm a single mom too, so if you want to talk about that, let me know. My sons were 8 and 13 when I was first diagnosed. They are now 18 and 24, so I've pretty much done my job with them, and that's really a good feeling. 

Jeanne

See also: Newly Diagnosed With Melanoma

Newly Diagnosed With Melanoma

A single mom in California got in touch with me through my blog because she is newly diagnosed with melanoma and is going through the whirlwind that we all experience when we find out we have cancer: Fear. Anxiety. Decisions to make. A flood of information just when your brain is least able to process it.

I've had melanoma, and am overdue for my regular checkup as I write this, but mine was stage I and easily dealt with just by excising it. So far since then, I've had one "funny mole" removed, but it wasn't melanoma. 

So whenever anyone writes to me about melanoma, I always refer them to Carver, who had stage III melanoma and who keeps up with what's going on in the melanoma world much more closely than I do. I also brought Teri, the Cheeky Librarian, into the conversation, because she is such a great researcher. She also recommends that people who are newly diagnosed DON'T do their own research on the Web, but rely on a medical librarian to help them. 

I think that's a good idea.

Both Carver and Teri had some useful things to say, so I'm going to post our e-mail conversations here, since others with melanoma will probably be dropping in to my blog sometime soon. 

The First E-mail

Hi everyone, I'm a single mother of two daughters.  I was recently told few days before Cmas 2008 that I have melanoma. Breslow 3.5mm & Clark level IV. I will meet with a surgeon in 2 days to discuss about Sentinel Node Biopsy and the need to remove more in the same area where biopsy was done. I get anxiety attacks thinking about surgeries.  I hate to go under the knife! :(

It also bothers me thinking that there's a possibility that all of my lymph nodes in my right under arm may need to be removed.  I'm a photographer and designer so I rely heavily on my right arm.  I was told that once you have all of the nodes removed, you will have an ongoing plm with swelling and pain.  Is this true?  I would prefer to leave my nodes alone and try other alternatives to heal.  

Your advice??

Guess My Sins Caught Up With Me ...

Teri, the Cheeky Librarian, sent me the link to this one: a possible Republican vice presidential candidate who thinks an exorcism he took part in cured a friend's skin cancer. (I take this one personally, because I have had melanoma, or malignant melanoma as we used to call it.)

The freakiest part of the account of the exorcism, written by Bobby Jindal, the 36-year old governor of Louisiana, is his description of a group of "friends" holding the woman down as she "... lashed out at the assembled students with verbal assaults."

The event, shall we call it, lasted several hours, and when the woman tried to run away, the others caught her and pinned her to the floor: "...they soon had her restrained once again, this time half kneeling and half standing."

As Teri wrote in her e-mail to me, "If folks held me down and didn't let me up, they too would be 'observing a tremendous battle between the [Teri] we knew and loved and some strange evil force.'"

No kidding.

I was going to suggest that an IQ test be mandatory for presidential and vice presidential candidates (that would have spared us George Bush the Younger), but Jindal graduated from Brown University in 1991, was a Rhodes Scholar, and was accepted at Yale Law School and Harvard Medical School, according to the article.

Read the article:

Is Bobby Jindal -- Who May Be On McCain's Veep Shortlist -- An Exorcist?

Read more about melanoma:

Skin Cancer

Remember: Cover up, use good sunscreen, and get any suspicious moles checked.

@ Jeanne Sather 2008.

Now It's Rocky Friday ...

Thank you to everyone who wrote expressing concern about poor GB, who swallowed two large rocks last weekend and had emergency surgery on Monday to remove the larger one. (He threw up the 2-inch rock on my bedroom floor Sunday night.)

GB developed pneumonia from aspirating fluid into his lungs, and his esophagus is also damaged by the rocks and the attempts to get rid of them, so he is still at the vet. His doctor has treated him with cortisone and also antibiotics.

At first, we thought he would be home in a day or two, so when the vet said, "You can visit him," I said no, because I thought GB would think I was there to take him home and it would be tougher for him to have to stay.

But after three days of phone reports, I couldn't stand it, so I stopped by to see him yesterday.

They had him in a run, with blankets on the floor, and an IV in his right front leg for fluids. He hadn't been eating, but they gave him 2 tablespoons of food yesterday and he kept that down. I think that was the first food he'd had since this whole drama began on Sunday.

So I went into his run with him and sat down on the floor to cuddle him, and the pooch, all 70 pounds of him, crawled on my lap. He needed a hug. So I sat there stroking him as he wheezed and heaved, just kind of spasms at this point.

Talked to his vet, and asked the Big Question, "So, he will get better, right?" To be told, "Well, pneumonia is pretty serious."

Came home and hung out with Constant (Connie), my dog, for the rest of the day. Connie is not quite sure what is going on, he seems to be missing GB, and I can't explain it to him, obviously.

Here's a link to a post that a reader sent. It falls into several categories: humor, skin cancer, and also "dogs who eat things they shouldn't":

Her tombstone will read WAS SOLD TO BUTCHER

See also:

Rocky Monday ...

But WHY Do Dogs Eat Rocks?

@ Jeanne Sather 2008.