Waiting is hard/possible supraclavicular node recurrence?

Well, as many may recall I have had on-going arm/shoulder pain since last
August and was bounced around like a ping-pong ball between all types of dr's (whom I didn't need to see) and had superfluous treeatments (not needed). Then this past November/December, my lymphedema arm which had worsened seemed to progressively worsen since December. I was again given the run around. My oncologist was concerned. and put me on an antibiotic. He even phoned me the next week. It hadn't improved so he had me come in. At that time we requested a PET scan in writing for the 2nd time. Well, then his tactics changed. I was told to see my regular dr. I did--and he told me all that I had was lymphedema. Okay... I did see my ob-gyn about another on-going problem that I was also sent by the oncologist to but that's another story I won't get into on this post. Meanwhile my arm is worsening--it has a pitted/orange peel look--and so I call the oncologist--again. This time his nurse calls me back and gives me an appt. in 6 days. The following day I just happened to see my ob-gyn. She also looked at my arm and said she thought I should be seen by my onc. sooner and that she'd call him. The following day, Friday, I am driving by my the medical facility--where they are all housed--so call my -gyn to see if she heard from him. The nurse took the message. I then thought--gosh, I am 'here' -- maybe the onc would take a quick look. After all he had been so concerned when he saw me the last time (had called me at home and even had me come in again). His nurse said he couldn't see me before my next appt--the following week--now 5 days later. I asked if I could talk w/him. She leaves him a message. He calls me back and spends about 5 min on the phone. I ask if he could take a quick look at it--wouldn't take more than a minute--since my ob-gyn had said she thought I should be seen sooner. He told me it wouldn't be a 'quick look' if he had to write it up. He is now telling me he wants me to see my surgeon and mentions something about "chest wall recurrence." This was on a Friday. I then put a call back into my ob-gyn (to be nice and tell her that I had already talked w/him and what he told me).
I call ob-gyn and talk with the same nurse. She says something about him not having any openings until my appt. the following week. Huh? Why would ob-gyn nurse be telling me this--weird. I leave a message for ob-gyn. I go home
Ob-gyn calls me back on cell phone at time when it didn't ring, but got message. As soon as I got message (right after it was left) I called back but nobody was there--was 5:00). I then listen to message ob-gyn left. She told me she put call into oncologist but that he was on vacation. Huh. How could he be on vacation. He had just called me back from his office and wasn't going to be on vacation the next week. I cannot even imagine why she would leave that type of message.
So, here it is Friday afternoon, I receive the above call from a dr. who has been wonderful and whom I had trusted--where it seemed as if she had 'lied.' I had talked with the oncologist who threw me a curve when he said I need to talk to my surgeon and for the first time mentioned chest wall recurrence. My arm is getting worse. The ob-gyn was concerned when she saw it and wanted me to be seen sooner than following week. I put call into surgeon but she had already left so left message. I had a great weekend (NOT) -- which was spent worrying and in discomfort.
Monday morning I get a call from my surgeon to come in. She isn't concerned about the worsening lymphedema and told me to see my physical therapist who treats the lymphedema. I had had it bandaged that day. I went down to P.T.
who said that the bandaging I was doing looked fine. That was a relief somewhat. I do see my oncologist on Wednesday. He isn't concerned or that concerned. However, my am is continuing to worsen and be uncomfortable. This was not the arm/shoulder that has hurt since last August.
Anyway, it continues to worsen. I am frustrated. I again call my onc. He finally orders an MRI of the area. I get an appt. for that in about 2 weeks.
I had that done last Friday. They couldn't get the IV in (after 6 pokes) to do contrast so the tech takes extra films. He then calls radiologist to see if contrast is needed--it is so I have come in this week just for contrast but need to have 'hep lock' put in arm (by oncology nurse first).
Meanwhile I see oncologist again on Tuesday--because my abdomen is increasing in size--I look 10 mos. pregnant--(won't get into that one here).
He reports that he is confused about MRI report. He is only concerned about my right arm and it also talks of left. I guess tech took all these extra films because contrast wasn't done. And radiologist had to report on them.
Report is talking about supraclavicular nodes being enlarged--on both the right (lymphdema side) and left side (which has hurt since August and which orthopedist told me prob was not my shoulder but neck and MRI suggested possible nodal enlargement last January which had been ignored).
Anyway, my oncologist is confused about mention of left side since he supposedly only ordered it for right side. He is ignoring fact that I had had difficulty on left side which I had reported to him and had even asked him for
PET scan (after he told me to get films re-read privately--which we did and PET scan had been recommended).
I haven't heard back from him, but my upper arm (one with lymphedema) hurts.
He referred me to endocrinologist (abdominal swelling) and surgeon (new sores on chest near tumor site). Now, he is acting faster--but I am beyond petrified. I have lived with these concerns for so long and seen so much on-line that I am looking at it from a somewhat existential perspective.
I just downloaded an article that talks about recurrence in supraclavicular nodes--prognosis is well, poor. Sigh...but that is only part of it....
Sorry for another long post, but it is hard to break down without leaving out major parts...it is quite a convoluted story...

progressive skin changes and bacterial and fungal infections have been misdiagnosed as dermatitis, eczema, gout, etc. resulting in improper drug prescription or other treatments that not only didn't improve the situation but allowed the lymphedema to progress unchecked, to the detriment of the patient. >>

Thanks, J. I see you are up at an un-g-dly hour as well...
Interestingly, when I experienced pain in that arm initially my onc did an MRI of it to rule out blood clot. I am not sure why he hasn't MRI'd it again for that reason.
As far as abdomen--yeah, my thoughts are on the liver too. I had this swelling at time of initial dx. However, from time of biopsy to surgery (23 days) I suddenly lost 17.5 lbs. That was weird. I had tried to lose weight for years and couldn't. I know I was stressed but don't think that can account for what went on. My thoughts--was that the yet-to-be determined lesion in my liver is really a met--and not a hemangioma as thought--and that after the invasive core biopsy I had -- that that triggered some other process which resulted in the rapid weight loss and also at that time sudden onset of rectal bleeding. I did have several enlarged retroperitoneal nodes on that first CT scan done after surgery. Well then I had chemo. My weight loss continued but then stablized after about my 3rd chemo (AC) and then the rectal bleeding stopped around that time, too. Knowing all I know now, I wouldn't be surprised if that wasn't all somehow related. If one were to look at this from a medical perspective --practically--it seems to me that the circumstantial evidence is most suggestive of that scenario (which was never evaluated).
In addition regarding supraclavicular node involvement---have been feeling discomfort/pressure in my neck since start of week. I still have good range of motion but find it a bit more uncomfortable each day.
Well, I better get back to bed/sleep--big day at work tomorrow. I suppose I could get on the treadmill instead or do some more reading here...hate to waste time sleeping but suppose I should...

Your clinical presentation doesn't match radiological findings I think that is what is troubling to your physicians. Will they biopsy the node, we all know that is fairly simple and relatively risk free and seems like a reasonable request. I would have a frank discussion - why he won't follow up on these findings, he owes you an answer.
Perhaps he feels the clinical presentation does not match the finding therefore he doesn't feel you need follow up but you need to know. If he thinks you are a overreacting - he needs to tell you that to .

If there was some obvious I think and hope it would be picked up...for years people go in for one scan or x-ray and they find something like cancer. I know don't do scans for the particular type of cancer, i.e. a MIR for liver cancer, CT Scan for lung cancer.. everyone just get the same scan with or without contrast, but wouldn't it be great !
You have had MRI, CT scan, PET scans, I don't mean to be funny but I don't think there is many tests left.

<< Your clinical presentation doesn't match radiological findings I think that is what is troubling to your physicians >>

The problem with that is there seems to be a lack of ecological validity. They are not necessarily doing the 'right' tests in the 'right' areas to find the problems. Then, they may not be using the appropriate imaging settings. Then there is the interpretation of the tests. They do report findings consistent with lobular mets. However, they do not recognize such. Included are statements "not 'typical' of breast cancer." They are correct in that what they found is NOT typical of most--85% of breast cancers, but what they report
IS consistent with the presentation of metastatic lobular.

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I dunno. I was told that no node(s) were felt. I don't get that one, because at my first appt. with my surgeon -- at time she did biopsy -- she told me that she did not feel any swollen lymph nodes; yet 9 of 12 were positive.

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Have you ever asked someone a question and they gave you a response which was not directed at the question you asked. They seem to be masters of this type of well--um--what would one call it--verbal manipulation or verbal switching???

ROFL...no time to go into it now but am basing it all on precedent, existing diagnostic idiosyncracies or parameters, and even more on logic or common sense

Hi there Aleph, I'm sorry to hear your story. I am not an expert but I found a website that might interests you Los Angeles Oncologists, it's a website where you can find specialists that might help you. May God bless you. Good luck.