Scan results inconclusive?

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1/28/2014 1:32am
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Replies: 24

Hi all....a couple of questions about my scans.  CT came back with two nodules in right lung base.  2mm and 3 mm.  Indeterminate in nature.  Left Kidney has lesion too small to measure.  Unable to r/o mets.  MRI of brain came back clear, but with " different uptake" over the entire skull.  And states to possibly do bone scan of skull to rule out bone mets.  The PA called me and said everything was "ok" and they want to rescan in 6 months.  She didn't mention a bone scan.  What is the opinion of waiting for six months to rescan?  And also, for being at a University hospital and Melanoma center, I was pretty disgusted with the results as no real dx. Was given. It just seems like they could have done a better job with scans? Or results?  Input welcomed.  

POW - (1/28/2014 - 7:57am)

Hi, Mom-

It would help us to help you if you updated your MPIP profile a bit. How deep was your lesion? What is the mitotic index? Did you have a CND? Just a few things like that.

Meanwhile, what you have posted is that you were diagnosed with melanoma on your leg in September and had a WLE with one positive SLN in October. You chose not to do an interferon trial (is that all correct?). So my question for you is: why did you have CT scans? Were you having symptoms or is there something going on that makes you a high risk for regression? Or were you just trying to get some baseline scans? I'm going to assume these were baseline scans.

As for your CT results, imaging can never diagnose anything. All the radiation oncologist can say is that a lesion is "suspicious for melanoma" or something equally vague. A definitive diagnosis requires a bioipsy and pathology report. So the vaguenes of the CT report is not unusual. 

The lung "nodules" you mention are probably too small to do a needle aspiration, so no biopsy and no pathology report. I don't know why the radiologist would recommend a bone scan of the skull beats me. I never heard of such a thing. But then again, I'm no expert. It sounds like there was a technical problem with brain the MRI (i.e., they didn't get clear images). But if that is the case, why didn't they suggest repeating the MRI? Weird.

So basically, I suspect that you had a baseline CT and MRI. They found some areas of concern in your lungs and kidney that are too small to biopsy. So it makes sense to me to wait and see what happens in a couple of months. Six months would probably be too long for my comfort level-- 3 months would sound better to me. But that's between you and your doctors. A lot depends on the characterictics of your original lesion.

Given your comfort level and the unusual MRI results, you might want to get a second opinion from another radiation oncologist. But except for the bone scan recommendation, the CT scan results make sense to me.

 

 

 

 

 

Anonymous - (1/28/2014 - 8:57am)

POW, when someone is stage 3 the depth and mitotic rate of the original melanoma is academic. I have noticed you asking for these details from other posters in similar circumstances but the depth would only have relevance in stage 1 or 2 melanoma and the mitotic rate is really only of significance in stage 1 melanoma.

POW - (1/28/2014 - 9:22am)

The Breslow depth and mitotic index are both important prognostic indicators for melanoma progression. They help to give the doctors and the patient a sense of how aggressive the tumor is and how likely it is to progress to Stage IV. For example, you will often see clilnical trials designed for "Stage IV patients or Stage III resected patients at high risk for recurrence." The "high risk" is related to Breslow depth and mitotic index, among other things.

When making treatment decisions, it is important for the patient and his/her doctor to know if this is a thin, slow-growing tumor or a thick, rapidly-dividing tumor. That is why I ask.

Anonymous - (1/28/2014 - 10:09am)

POW, as you have never personally had melanoma may I ask if you actually have any medical training as I disagree with what you are saying.  

My understanding as someone who has actually had melanoma is that both the Breslow depth and mitotic rate give an indication of how likely the melanoma is likely to spread, either by way of the lymphatic system and appearance in the lymph nodes (stage 3), or directly via the blood system to recur in an organ and hence stage 4.  Once the melanoma has metastasized as stage 4, there is little point in referring back to the original depth and mitotic rate and, with stage 3, I would have thought that the number of lymph nodes involved was the over-riding factor for recurrence.

Perhaps Janner can clarify this.

 

POW - (1/28/2014 - 10:37am)

It's a good thing that one doesn't have to have had melanoma in order to be an expert. If that was true, there would be damn few melanoma oncologists in the world! ;-)

If you only want to believe information from physicians, why are you participating on MPIP? 

As always, you are free to belive or disbeleive whatever you wish and make your decisions accordingly. 

Anonymous - (1/28/2014 - 11:46am)

But melanoma oncologists are obviously medical professionals.....

I participate on MPIP because I have had melanoma. I do not believe that everything a physician says is correct ( I was in fact misdiagnosed a year before the correct diagnosis).  I have comprehensively carried out my own research on the subject but would never hold myself out to be an expert as it is all too easy to mis- inform.

Sorry about hijacking your post Momrn5, I cannot give you any practical advice on your question but I hope everything turns out OK.

 

Anonymous - (1/28/2014 - 3:57pm)

POW   No one claims that you have to have had melanoma to be an expert. Posting on MPIP does not make you an expert either. Are you an expert? Two cases in point in this one thread: 1) In this circumstance anonymous is correct. The initial biopsy data do not have relevance for treatment decisions once the melanoma has spread.All stage 3 and 4 patients are at high risk for recurrence.2) In addition the MRI data that you have dismissed out of hand may be significant.

Even an actual melanoma specialist would be more careful in giving specific instructions to melanoma sufferers in this format without knowing the whole clinical picture. The forum is a fantastic place to offer support, information and a vehicle to let the people with melanoma  and those who care for them use all the resources they can muster. Toward that end we must all be responsible and accurate in what we say and in recognizing our limits. That goes for all who post no matter what our level of understanding.

Bubbles - (1/28/2014 - 5:21pm)

Seriously?????  You really just said that, POW????  Wow!  Specifically to a crowd of predominantly melanoma patients????  Not to mention in the face of multiple, recent inaccurate "advice" you have just posted to folks in need of REAL, FACTUAL help.  This is getting seriously out of hand.  If you don't take our needs seriously enough to do your research BEFORE you make dogmatic pronouncements then I'm not sure what your purpose in posting here is.  I don't know that cursing and making "funny, wink-wink" smart aleck jabs at people in the fight of their lives is appropriate.  I am certain it is not kind or helpful.  If you don't have the time to really find out real answers, to real questions, what are you doing?  I AM a medical professional.  I am a Stage IV melanoma patient.  BUT...if I am not certain my response provides real, researched answers...I don't post.  And even when I do...I haven't seen the patient's scans.  I haven't done an exam. I haven't access to their complete medical history.  I don't know what is in their heart and how they really want to approach their care.  So, I have to be super careful with off-the-cuff comments that might impact whether a patient seeks appropriate care or not.  Have you ever actually READ an MRI or CT scan?  Have you done a medical exam?  I have.  But, that doesn't mean that I can answer every question on this forum. Must one have done these things in order to offer support or good advice.  Not necessarily.  But, one certainly needs to be a lot less absolute and judgemental, not to mention sarcastic, when dealing with real live humans, who are scared, worried, and dealing with a life threatening experience that you can only imagine.

Perhaps you will take these thoughts to heart.  You could be so much more helpful on this forum if you did.

Thanks, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Anonymous - (1/28/2014 - 5:37pm)

Celeste,

Thank you for taking the time to voice your opinion which I agree with totally.

I am sorry POW, but I recent you posting and gving advice with NO practical experience.

Marybeth

Gene_S - (1/29/2014 - 3:17pm)

POW I think you do a good job on here and you have not had melanoma but someone very close to you has and I can tell you did much research from your many answers.  I am thankful that come in and read the board to help patients and their caregivers with you suggestions.

I noticed also that if someone wants to pick you apart they only do it under Anonymous.  My guess is that you might think they are better able to tear apart what you are saying since you won't know who it is.  Thus all the hiding.

As you stated above if you only want to believe information from physicians then why would you care what is said on this board.  And doctors make mistakes also even anonymous stated he was misdiagnosed to begin with.

Anonymous states "POW, as you have never personally had melanoma may I ask ". to which POW replied "It's a good thing that one doesn't have to have had melanoma in order to be an expert."  

Anonymous states "All stage 3 and 4 patients are at high risk for recurrence."  I started out at Stage III because my lesion was 10.5 mm and I had no lymph involvement as I had the SNB and none was found.  I advanced to Stage IV when my liver and lung mets were diagnosed after  my doctor and I discovered an unresectable lesion pushing on the cervical spine.  Then it was found from scans to be large lesions on the liver and lungs.  Most of my lesions were found by me and my wife in between Doctors visits.

I think the original poster should speak with her doctor and try to find out about the bone scan and what is thought of in the doing or not doing.  I also would suggest she go to a melanoma specialist if not seeing one.  The most important thing is the comfort of the patient with the time between scans and what it shows or what treatments they want to try.  Those of us who have been there can only suggest what we THINK.

I personally don't like scans to often as you are getting radiation and who knows what is in those dyes they are injecting.  I have had a reaction to the dye and can tell you it was not pleasant either and some have gone into shock from them as well.

Gene (Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Swanee - (1/29/2014 - 8:45pm)

I too appreciate POW's posts and appreciate all the time and effort that goes into helping so many on this board.  It takes a lot of time to read and comment on these questions and respond to so many different scenarios.  I don't ever read these posts and accept with 100% certainty that the poster is 100% accurate detailing their situation, sharing  their thoughts, concerns and requests for direction.  As well as the responder who has such a small window of information and could not possibly respond with 100% knowledge of the situation. I don't ever accept any comment as 100% accurate truth but rather a educated answer that reflects truth in what is understood by the responder. 

This is a forum and the definition of a forum is:  a public meeting place for open discussion.  I've read the MRF Forum posting policies and find POW to be following the guidelines.  Perhaps from time to time, we all need to review the MRF posting policies to make sure we are following the Code of Conduct.

I think we all do more good by staying focused on the positive and using our time to clarify rather than attack.   "Be kind, for everyone is fighting a great battle"  -Plato (from Angela C)

Swanee

 

 

Momrn5 - (1/29/2014 - 10:14pm)

Thanks Shawnee, I agree.

Momrn5 - (1/28/2014 - 12:22pm)

For the record, Clark's level 4, mitoitic rate 3, depth at least 1.8 because of shave biopsy.  1% surface area involved in the sentinal node only. All others clear.  All margins clear.  They said 80% chance that the surgeries were curative.  The MD wanted scans for a baseline and because he said if it did spread we would want to know right away because of all the drugs and clinical trials out there now for melanoma. I didn't really want them. But now I guess I am glad I got them so the nodules can be watched.   POW, thank you for your input.  

Dear Momrn5   It is harrowing to deal with this. I am sorry. For the sake of accuracy I need to tell you that you are completely correct. The initial biopsy data has no relevance for your care at this point. If there is an abnormality on your MRI in the bone I believe that needs to be investigated. MRI is not as good at defining bone pathology in some cases as other methods eg bone scans. The other findings on the CT scans need to be taken seriously. You need to seek out a true melanoma specialist. It is important to address issues early because the volume of tumor, the tumor burden, has a bearing on the kind and sucess of treatment.

I wish you well       BMorris

BMorris

Momrn5 - (1/28/2014 - 5:04pm)

Thank you all for your replies. I think that I will ask for a bone scan and also try to move the rescans up to 4 months.  

 

Bubbles - (1/28/2014 - 5:35pm)

Hey Mom/RN,

Glad you demanded that pathology report on your initial lesion.  I think your plan sounds reasonable.  Sorry you have had to deal with all this in such rapid succession, not what you had in mind for 2013 I'm sure.  Sorry, too, that your serious question was hijacked by such a lot of mess.  Anyhow, I hope you are dealing with a melanoma specialist.  As you know, the doc who does the most, does it best.  Scans can always light up a bunch of red herrings, but as I'm sure you've had to tell your patients....just because they may be red herrings you can't aford to ignore them completely, esp when dealing with melanoma.  I wish you my very best.  Hang in there and keep us all posted with how things turn out.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Momrn5 - (1/28/2014 - 5:43pm)

Thank you Celeste.  I appreciate that.

hbecker - (1/28/2014 - 7:58pm)

I agree with your plan to ask for more frequent scans, particularly since there are "things" to watch.

There's a balance somewhere between exposing yourself to more radiation and not letting those "nodules" go unwatched. I'm not sure where it is, though ... I know lots of patients have scans every 3 months for the first two years and then the interval is lengthened over time. I was pretty unhappy when they put my husband on a four-month schedule. But I've adjusted to it now (sort of ...)

~Hazel

blogging at www.hazelbecker.com

Momrn5 - (1/29/2014 - 10:17pm)

Thanks for your input. Yes, I don't like all the radiation and didn't really want the scans . Now glad I took them in case there are problems with these little "issues" that could turn out to be something more menacing.

Thandster - (1/30/2014 - 8:31am)

It doesn't sound like these scans were done at U of M is that correct? Are you still being seen there for follow up?  

Thandster

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

Momrn5 - (1/30/2014 - 8:44pm)

They were done at University of Michigan. That is why I was somewhat shocked that they couldn't give me anything more conclusive. I am seeing Dr.  Laos.   At that rate, seems like I could have had them done closer to where I live. I drive 7 hours to go get the "best" care.

I am conceren that the un-knowns from the brain MRI could possibly relate to melanoma cells getting into the meningus of the brain.

I'm me, not a statistic. Praying to not be one for years yet.

Momrn5 - (1/30/2014 - 8:48pm)

Well, that is a really scary thought, but I have thought it.  They did say....skull.  Not brain.  But yes, that is why I am going to ask for a bone scan.  I want POW to be right, that is was a poor scan....just seems strange that it is "the whole skull" where the Uptake is "Different."  Not just one area of the skull.   Really, isn't that just a really professional diagnosis?  Different Uptake.  

Prefer answers, that just raises more questions and makes for more concern/worry.

I'm me, not a statistic. Praying to not be one for years yet.