can this wait until June?

Posted By
JW
4/15/2018 4:14pm
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JW
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Replies: 16

My husband was diagnosed with mucosal (anal) melanoma 4 weeks ago after a colorectal surgeon took out what was supposed to be a polyp but turned out to be 3 melanoma tumors.

He finally had a PET scan on Friday, and we will finally learn his stage at his oncologist appointment this week (though we know it is at least the worst level of stage 2, since there were 3 tumors and the largest was ulcerated and 11 mm deep).

We already have a second opinion visit scheduled with a melanoma specialist for next week, but I am wondering if we also should make an appointment at MD Anderson asap.  My husband is a teacher and wants to wait until June.  

I at first thought that was ridiculous, but as I've read been reading on this site and others, it looks like the treatment process is a bit slower than I would have expected, and many people pursue seveal opinions before starting treatment.

So, maybe it is not so unreasonable to wait to make the trip to MD Anderson when it is more convenient?  We also have an 8 year old daughter, and waiting until she is out of school would be easier in terms of child care, as well.

Is that stupid, though?  Should we hurry on over to MD Anderson as soon as we know the stage?  Will getting there 6 weeks sooner be likely to make a difference?

Oh, and by the way . . . when and how do you tell your 8-yr-old that her dad has cancer?

Thanks for any input from anyone!

JW

kcmtnbiker - (4/15/2018 - 4:33pm)

I don't think you should wait until June to start treatment. You are correct that getting a treatment program in place takes time. It seems like the more the oncologists know, the longer it takes. But, that is to be expected, as your oncologist may want to do additional testing. Genetic testing has become the big push over the last few years and it takes time for that to get done. So, if you wait until June to get the ball rolling, your husband will still need to go through all of the prelimanary steps. In addition, he should have a conversation with a melanoma specilalist at MD Anderson and go with that medical professional's guidance. 

kcmtnbiker

JW - (4/15/2018 - 11:01pm)

Thank you so much for your quick reply.  In re-reading my post, I see that I was a little unclear.  We have gotten the ball rolling with a general oncologist, and I neglected to mention that the upcoming melanoma specialist appointment is at UT Southwestern, which I understand to be a highly-rated facility, though not as highly-rated as MD Anderson.  We definitely want somoene's opinion at MD Anderson, but we just aren't sure if we need to rush over there, or if we can start treatment locally and put off the out of town visit.     I guess it will be easier to decide once we know the staging and what treatments are being proposed.  In any case, I'm so grateful to have input from others who are dealing with similar situations.  Thanks so much for replying!

JW

BillB - (4/15/2018 - 4:45pm)

Simple, make an appointment at MDA, get in your car, get on a plane, walk but go see someone ASAP. Two months can make a lot of difference. In 5 months I went from stage 2c to 3c. In 8 months I was stage 4. 

Bill

JW - (4/15/2018 - 11:08pm)

Thanks for your reply, Bill!  This is exactly how I feel, but my husband does not have this sense of urgency.  I hope when I tell him about your experience, he may change his mind.  We are only a 6-hour drive from MDA, so even if the local melanoma specialist turns out to be great, I think we should get at least hear what someone at MDA has to say sooner rather than later. I appreciate your taking the time to share your experience!

JW

Bubbles - (4/15/2018 - 6:21pm)

If you have access to an actual melanoma specialist where you are, next week, then I think it is fine to see what they say and what treatment they have to offer.  If they do not seem knowledgeable, offer immediate treatment that makes sense, etc, etc, then absolutely go to the next melanoma specialist ASAP.  TIme is of the essence in melanoma.  Mucosal melanoma can be an even trickier beast.  But...there is hope!!!  

Here is a basic primer on melanoma treatments that I put together:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Hopefully, this will make you better prepared for what to ask, what you might hear, and able to judge the appropriateness of the treatment your local melanoma specialist offers.  Additionally, getting a second opinion is never a bad thing even if you end up utilizing a local source in the end.  

As to children.  My kids were 10 and 12 when I started this journey.  They are much smarter than we think they are, so keeping things from them only makes it more scary for them.  They already KNOW you are upset, they KNOW things are going on, and they KNOW that it is not good.  Being honest within the bounds of their age/cognition and within the limits of what you REALLY know at the moment is usually the best policy.  At the moment, simple conversations about the fact that daddy had a "sore place" or even "tumor" in his intestine that the doctor took out would be a good start. Also...it is very good they found it and took it out.  Daddy is going to have a few more tests to see if there is any other medicine he needs.  

Stuff like that works better than you think.  If you get "caught" being upset....be honest.  With something like, "Your daddy is doing great, but sometimes I just get a bit worried about him and sad that he has to have even the littlest problem!!  But, we are going to do great helping him take care of this together."  

Enlist the help of friends/family to keep your daughter's life normal.  Getting my kids to soccer and dance was almost more important to me than my cancer care at that time in my life.  

And if folks do want to help....let them....you might even want to share something like this when you are ready:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html  

Every family and every patient is different.  Our caregivers are incredibly important to us cancer peeps.  It is a super tough job....and we couldn't do it without you!!!  Hang in there.  I wish you, your husband and your little one my best.  Ask questions as you need.  There are many smart and caring peeps on this forum.  Yours, celeste

JW - (4/15/2018 - 10:40pm)

Thank you, Bubbles! I read both of the blog posts you linked and several other posts on your blog. You've been through so much, and it is amazingly generous of you to take so much time to share your knowledge with others!  I'll definitely be referring back to your primer after we hear what treatment options are being proposed, and that may help me decide whether the local specialist is sufficient (for the short-term, at least) or whether to hurry over to MD Anderson.

Re my daughter . . . we have told her little bits along the lines you mentioned . . . she knows Dad had a polyp (as we thought at the time) removed from his butt and that his recovery has been very painful, that he had a test recently to see if he had any more "polyps" anywhere else in his body, and that we are going back to the doctor on Friday to hear the results of that test.  I'm just wondering when to mention the C-word. . . she has heard of cancer and knows that people can die from it.  We've avoided it so far since we have so little details, but I think we'll have to tell her at some point or risk someone else letting it slip.

JW

bjeans - (4/15/2018 - 7:38pm)

JW, just a question in case down the road you go elsewhere. Did you mention Anderson because it's the closest large, top notch melanoma center to you? Because there are other ace centers/doctors that members of this forum also speak very highly of in other parts of the country.

My husband was initially diagnosed as 3C, and we're going to a melanoma treatment center that's close by. The melanoma specialists have years of experience and there's no need for us to travel. If treatments were not working or became highly complex without good options, we'd then seek out another opinion at Dana Farber (closer than Anderson), Anderson, or one of the others often mentioned here. It would also depend on the doctor, available studies, etc.

By the way, Bubbles' primer that she linked you to is well worth reading. Someone pointed it to me with my first post too. Hang in there.

Beth

JW - (4/15/2018 - 10:54pm)

Thanks for you response, Beth.  Yes, that's why I mentioned MD Anderson.  We are in the Dallas area, so it's only a 6 hour drive from us, and my understanding is that they are the best in the nation.  

We have an appointment next week with with a melanoma specialist at UT Southwestern in Dallas, which is also highly-rated.  We'd prefer to stay local if possible, but at the follow-up with the surgeon who removed the tumors, he was pretty insistent that we should go to MD Anderson.  However, I'm not sure how much I value his opinion . . . he let the supposed poylp grow for 3 months (and 3 visits from my increasingly uncomfortable husband) without biopsying it, and he seemed offended at the onocologist's suggestion that my husband may need additional surgery to get clear margins.

It's all so overwhelming!  It's very helpful to hear others' experiences and opinions.  Thanks so much for replying!

JW

bjeans - (4/16/2018 - 7:45am)

My take, for what it's worth (debatable)? Trust your gut - and mind - about the surgeon, trust Bubbles about starting local, and you may not need that second opinion, at least not immediately. At the beginning we were sure we'd get a second opinion, but after inhaling as much info as possible, it was clear that treatment would be basically the same anywhere, and our experiences at the center were extremely positive, so there was no need. He happened to fit into a study, so the only question was in or out.

Some melanoma centers and other cancer institutions have programs for patients and family members, including children. On-line resources are available too - they don't have to be melanoma specific for ideas about addressing this with your daughter. You're obviously quick to find what you need (like here!), and your local treatment center may provide resources too. But if you'd like links I'd found - though I hadn't gone past the first layer or so - just send a message. 

Reeling from the news while trying to learn a new language isn't easy. Hang in there. 

Beth

JW - (4/16/2018 - 10:27pm)

Thanks so much!  I appreciate your sharing your take!  Just sent you a message.

JW

iskitwo - (4/16/2018 - 2:24pm)

I am also in Dallas. I am currently using Dr Cowey at Texas oncology (Baylor). I also got a second opinion at MD Anderson when first DX. I feel like the care I'm getting in Dallas has been very good but always nice to know that I have MD as a back up if needed. I also have two small children so it relieves much stress by being so close to the doctors here in Dallas. Always trust your gut. Once you get that first visit in with MD Anderson then they will always be a phone call away if you feel you need it.

JW - (4/16/2018 - 10:31pm)

Thank you for this info about Dr. Cowey.  My husband's first oncologist visit and PET scan were at a TX Oncology branch, and we've been really happy with everything about them.  We'll keep him in mind in case things don't work out with the guy at UTSW.

JW

Prd10 - (4/16/2018 - 12:04pm)

Hi,

I think you've been given some really good advice, you will find that this board is full of amazing people!  Regarding telling your 8 year old I would probably tell her pretty soon.  My son is 7, although I've had melanoma since he was a baby, he always knows when something is going on even at a very young age.  I completely agree that it's much scarier for them to know something is going on but not know what. We've found books to be good resources for our son.  There's a book called my mom has cancer I'm sure there's one for dads too.  Also, I would let the school know ASAP.  I struggled with telling them but they have been an incredible help to our family.  My son always had a hard time settling in at school on the days when I had treatment and they were able to give him a little bit of extra love.  The school social worker will also play a board game with him or read a book about cancer with him just to get him to talk and check in with him.  

Take care

 

JW - (4/16/2018 - 10:34pm)

Thank you -- this is helpful!  I'll look for books (we love to read!) and I'll be sure to let the school know once we tell our daughter. 

JW

I have almost nothing to add other than that it's probably important to get that second opinion at MDA asap, if only to avoid a potential situation where you husband has started a treatment locally only to be encouraged to take a different approach at Anderson. The local cancer specialist we first met with suggested a different treatment approach than did the melanoma specialist he now sees at UCLA.  

Also, the advice to let your child's school know is so important. Our son lost an older sibling at about the same age as your little one. He had many questions about his step-brother's death, which was suicide. We were advised to answer his questions, but not innundate him with information. They will only ask about things that they're capable of understanding, so the trick is to respond simply and leave it at that. 

Now our son is 22 and in college. When we broke the news to him about his Dad's metastatic melanoma, it was very important tor us to emphasize the medical advances that have been made in recent years because his understanding of the disease prior to that point was that it was a quick and lethal killer. But we knew what we needed to communicate to him because, as you do your own, we know our child. 

I'm sorry you and your family are dealing with this. I hope you find lots of support among your family and friends and on this forum, as so many of us have. ~ Carol

JW - (4/18/2018 - 10:39pm)

Thank you for sharing your experience.  That is a helpful perspective to share with my husband.  I'm so sorry that your family lost a child to suicide!  I appreciate your advice about letting the school know, and only answering questions rather than innundating her with info.  Re support, this forum has been a godsend to me, as my husband is insisting on secrecy at this point, so there aren't a lot of people I can talk to right now.

JW