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September 21, 2013 at 12:27 am #21587
It’s been awhile since I have posted. I’m out “living life” and between check-ups, so I am giving little thought to mel these days.
However, recently I had some health problems that looked like I had psoriatic arthritis. My doctor ordered x-rays and bloodwork. My chest x-ray came back with the diagnosis of “granuloma seen in the right lower lobe”.
I know that granulomas are benign (mostly) and not uncommon, but I had an x-ray in 2009 shortly after my first melanoma and it was “clear”. So this is a change in the past four years.
Is this a cause for concern? I will see my doctor (for arthritis, to go over the labs) on Oct 3. I just saw the results on my patient portal.
Just for information, my melanoma was .43 Breslow, Clark’s Level IV, one mitosis, in 2009. I had a second melanoma in 2011 that was in-situ. I know and am thankful that I’m at low risk, but I have to be honest, reading this sort of threw me for a loop. Should I be concerned?
Thanks, as always,
BetsySeptember 21, 2013 at 10:03 am #62552
About a year after my 1A diagnosis (so about a year ago), I wanted a chest xray. My Dr warned me of false positives, etc. . but I wanted one. I decided to go ahead and get a chest x-ray done, since I never did from a year since my 1A diagnosis (figured get a baseline in case would be useful in the future), even though Dr said isn’t necessary with an early thin lesion like mine, no symptoms, etc.. He called back and said there are a few spots of concern in the left lung, and he wanted me back next day for a chest CT with contrast. I know Catherine has said that Chest xrays according to her doc are not how you would diagnose a spread from melanoma. Anyway, after the CT, the Dr said a really big calcified granuloma (he said in the midwest people get histoplasmosis infections and this is a result of that). The radiologist comment in the CT scan said it could be confirmed by PET, but the oncologist said he doesn’t think that is necessary. He said if anything, maybe just repeat the chest x ray in 3-6 months to ensure it’s still the same size. But, he said he had 2 different radiologists look to confirm calcified granuloma. So did not recommend a biopsy (he said probably couldn’t get a needle through it anyway, since it would be hard). I guess all sorts of benign things can be growing inside us and really scare us in our position with melanoma.September 22, 2013 at 4:40 am #62553 Thanks, cohanja, for your reply. It does make me feel better. I have never even been in the Midwest, though…I’m sure that might just be a factor in these, and other people get them?
I guess my concern is that I had a totally clear chest x-ray in 2009. I wonder if these come up suddenly. I wouldn’t mind a CT to rule out anything terrible, but hopefully my doctor will explain it better to me. I think there is pretty much no way this can be something scary (like a met) and I just need to wrap my head around other things causing “stuff” in my lungs. My new condition might even have brought this on.
I really appreciate you sharing your story. Whew. Now I’ll relax till I see the doctor on October 3 and get the full medical explanation for this.
I’m always so glad to come on this forum and get help/advice/commiseration!
betsyOctober 4, 2013 at 3:59 am #62554
Cohanja, I wanted to get your thoughts on this. I went to my derm for my six months check-up. (It was a good one, by the way..no biopsies!). She said she really didn’t think it was anything, but that to be sure she would recommend I see an oncologist IF my rheumatologist didn’t refer me to one, as she was the one who ordered the x-ray. I saw my rheum today and SHE said “it’s nothing” even without getting any information from me on having a melanoma on my back, or anything about my x-ray in 2009. Finally she sort of belittled me by saying, “Obviously you think you have cancer so I’ll refer you to a pulmonologist”.
So, I can get the referral to the oncologist, or I can get one to a pulmonologist. I feel like I want to go to someone who “knows melanoma”, so I’m leaning toward the oncologist. I would like to hear what you did–that two radiologists looked at it and said it was clearly benign….and, also to get a ct scan like you did. My rheumatologist basically said no way would they order more tests.
Somehow I am being made to feel like a hypochondriac. I don’t understand it…when my derm took off my first melanoma, she said, “it’s probably nothing” (making me feel like a hypochondriac), and it was a melanoma. When she took off the second one, she said “it’s nothing, but you want me to biopsy it, SIGH, so ok”, and it was in-situ. I feel like I always have to push these doctors to do stuff and I am always glad I did. I just want a more defined answer than “it’s likely not anything” because right now I just have five words on a lab report “granuloma on right lower lobe”. I have heard “it’s not anything” before and they have been very wrong.
Thanks for any advice on which doctor I should see.
BetsyOctober 4, 2013 at 9:40 am #62555
It is ironic sometimes. . I was seeing on oncologist who does deal with melanoma when I got the xray and CT scan. He warned me against getting the xray because he said there are many times false positives that show up, but once we go down that road he has to check out anything that shows up even though odds are it probably is nothing given my primary pathology. But I wanted the xray, and sure enough things showed up that he had to pursue further. As I understand how he explained it to me, the CT was necessary to confirm the growths seen were calcified, which would indicate granuloma. I guess the xray can’t see that. I wasn’t thrilled with all the radiation I was exposed to during the CT scan, but I guess if nothing else it’s a baseline in case I ever needed a future xray for something else. . when they see it again, at least I’d have this baseline to know it’s the same thing, same size, etc. as before and hasn’t grown. He also did another chest xray 6 months later just to confirm it didn’t grow. I’m not a doctor, maybe Catherine has more advice, but I keep hearing people on this forum say you just have to be vigilant with melanoma because it doesn’t always behave like we think it should/will. If you went to an oncologist who deals with melanoma, they obviously would know the disease better and might give you options such as 1) repeat xray in 3-6 months to confirm nothing has grown, and then that might be it and put it to rest or 2) give you the option of a CT scan, then you’d have to weigh the risk/benefit of the having the scan. Odds are it’s nothing, but we like to be assured (at least I do). Oncologists treat active disease, so probably afterwards it’s not like you’d need to keep seeing him/her. But they might give you more options as to how you’d like to proceed.October 4, 2013 at 2:26 pm #62556 Thanks, Cohanja,
I just really appreciate all your insight into this. Can I ask why you were seeing an oncologist in the first place? I didn’t think they saw Stage I/II folks? I had my first x-ray (baseline, as you say) when my derm surgeon ordered it after my mel came back a little worse than they thought Clarks’ level-wise. I remember at that time thinking it was unnecessary based on what I had read, but I had it (as you said, as a baseline). And it was clear and that was good. I feel that they can’t know for sure about the granuloma, unless an oncologist (expert!) sees it and based on my mel diagnosis can say “let’s not worry”. But I feel like I’m being completely paranoid.
The truth is, I
have become a more paranoid person. My melanoma looked nothing like any photo..it was a tiny freckle, the size of a period. I guess it had already started to regress. I was lucky my derm found it, but as I said, I well remember her saying, “I’m going to biopsy this because it’s speckled, but I think it’s nothing”.
I think I will go with the oncologist referral from my derm and ditch the rheumatologist all together. She really was annoying and life is too short to go to a doctor that belittles me!
Thanks for all your insight! I REALLY appreciate it.
BetsyOctober 4, 2013 at 3:20 pm #62557
I was seeing an onc in the first place because I just wanted to feel that reassurance of knowing that someone more than my general internal medicine family physician was checking my lymph nodes and monitoring me, after a melanoma diagnosis. I know they usually don’t see Stage I patients, because there is no active disease to treat, but they didn’t turn me away, they said if I’d like to come in every 6 months or every year, they are happy to see me. I know it’s probably not necessary, but I just felt like it’s what I wanted to do.October 4, 2013 at 3:32 pm #62558 You are like me! I would love that, but was told they wouldn’t see me. My derm gives me the most cursory of exams (this last one…she didn’t look at my scalp and didn’t do a full body check…I didn’t feel like asking, so let’s hope I’m ok! lol!). She always suggests a one-year check-up and then I remind her of 2 mels, a squamous, multiple basals and she goes, “Oh, right. I guess six months”. I don’t know if anyone else would be better. She almost NEVER checks my nodes.
My mother died from breast cancer and my father had cancer but died from pneumonia before the cancer was treated. I AM paranoid because, of course, I saw my mother get to the magical “five-year mark” only to die during her sixth year. I know cancer is unpredictable. I don’t want to look like a paranoid person, but living with someone who dies from cancer will do that to you. I really do appreciate you taking the time to give me your insight into this. I know in the big scheme of things it is minor, but you know how they say “it’s only minor when it’s someone else”…ha ha…it doesn’t feel minor to me!
THANK YOU!October 5, 2013 at 12:39 am #62559
Well, my derm’s nurse called to tell me to set up the appt with the oncologist and that they were sending a letter out regarding this to my pcp and my rheum (not sure why a letter…probably discussing crazy patients who are paranoid–ie, me).
Anyway, she acted like I could easily call and get in, but noooo. The oncologist’s nurse was confused as to a) why
I was calling and not the doctor and b) what exactly was wrong with me. When I said I wanted a consult about an x-ray, she acted very much like no way would he see me, but she would “check” and call me next week. I think her exact words were, “He’s not just going to go over an x-ray with you”. I felt stupid.
I also feel a little lost. I know it’s probably nothing, but it’s so odd to not have anything more than a line on a lab report about this granuloma. No size. No discussion. I really want a doctor to point to the actual spot on the x-ray and say, “See this? This thing here makes me very sure it’s not cancer”. THEN I’ll relax. But, I think it’s not going to happen.
Anyway, Cohanja, you are lucky to have an oncologist who is willing to see you for check-ups. I feel like I have my derm (who said to me, “I know nothing about x-rays” and my rheumatologist, who made fun of me)…in other words, I have no one.
I’m sure it will be fine….just, sigh.October 5, 2013 at 12:57 am #62560
Sorry about that. I’ve actually seen multiple different oncologists to see which I like, and all were willing to see me. When I had my xray and CT scan, a radiologist read the images and sent the report to the Dr who went over it with me and pointed things out, like you said, showing me what different things mean, etc… I’m not sure where you live, but maybe there is someone on this forum that lives in the same vicinity as you and could recommend someone that would work for you.October 5, 2013 at 1:20 am #62561 Oh, I am jealous of you…really, I should say, happy FOR you to be in that situation.
I live in San Antonio. If anyone knows anyone they can recommend who would actually see me and sit with me and point out things, I would so appreciate it. My derm never spends much time with me, and I have been with her for 13 years. I liken it a little to a bad marriage…I’m not happy, but she is who I know, and I hate to leave. There is no melanoma center of excellence here, and for being a part of the sunbelt…very little melanoma education that I can see. My derm surgeon (who performed my WLE’s) is great, but all he does is surgery. So, yes, I feel a little lost.
Where do you live? Is this a “coast thing” (part of me thinks the East and West coast get some very good cancer doctors and centers!). I am familiar with MD Anderson, of course, and my mother went there when she had breast cancer. I’m pretty sure I can’t go there either, without “active disease”, but maybe I should look into that. It’s a three hour trip, but I wouldn’t mind.
Thanks again!October 5, 2013 at 10:03 am #62562October 6, 2013 at 12:57 am #62563
I have used that site and also the “Super Doctors”, but they don’t really help. But it’s ok, I’ll just muddle through…I might not have the very best doctor, but I also don’t have a bad prognosis. If I do ever receive really bad news, I’ll search harder, as others do.
thanks!October 23, 2013 at 1:47 am #62564
Hi, I wanted to update on the “granuloma”. My dermatologist did refer me to a wonderful oncologist who ordered a CT scan and saw me today. The “granuloma” was actually a blood vessel, which kind of showed me that x-rays really don’t always get it right (even though that was good news, but it could easily have been bad news…it just isn’t that clear in an x-ray), but I had something ELSE in the left lobe which caused him concern enough to order a PET scan. He was pretty sure it wasn’t melanoma, but this would rule it out for now, and we will follow up with a CT scan in six months to see if this new spot stays the same, etc… I just got the good news that the PET was clear so I am very,very happy. The upshot of this is that I have an oncologist who has ordered genetic testing for me based on four females in my mother’s family having had breast cancer and my maternal grandfather also having had prostate cancer. I suppose if I had to go through all this worry to get the very test I have been putting off for over 10 years, then that’s probably a good thing.
I’m happy for my good results, and for the peace of mind I have knowing that a knowledgeable doctor has given me the all-clear. I really did want to sit and look at the screen with him and discuss it…and I got to.
Cheers to all,
BetsyOctober 23, 2013 at 12:14 pm #62565
Glad to hear it. When I was dealing with this lung granuloma stuff last year, my onc said after the CT that we could confirm with PET, but he thought that was not necessary, that he was comfortable this was not something to be concerned about, and we could always do xray in 3-6 months to confirm there’s no growth, etc.. So that’s what I did. It stinks that were it for not having melanoma, this kind of stuff wouldn’t blow up into such a big deal with CT and PET scans, etc. . .but since we have this history/diagnosis, it’s always going to turn into much bigger ordeal when something like this pops up.
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