After 6yrs + 8mo BC is back

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Chirps
Chirps Member Posts: 91
edited March 2017 in Just Diagnosed With a Recurrence or Metastasis

Report from Biopsy 2 days ago confirms that it's breast cancer. The US-guided Fine Needle Asp bx removed tissue samples from my neck. There's a bit of a supraclavicular swelling that's visible on the left side of my neck (above collar bone), but some who felt it seemed a bit puzzled that it didn't feel like the hard lump that seems to be the hallmark of the "supraclavicular lymph node swelling" that apparently raises a big red flag.

My "real problem" about 6 weeks ago was nerve impingement in my left arm. Ulnar and median nerves. That's what was starting to bother me day-to-day. The "boggy" bulge on the side of my neck was just something I noticed when I was going to my LE expert to see if I had "some kind of LE thing" going on, because of other more subtle symptoms in my left arm.

So after seeing my PCP about the supraclavicular swelling, in late Feb I had a chest CT and a neck CT, followed by a brachial plexus MRI in early March. The reports described a soft tissue mass that's along a jugular vein (and pressing on nerves). They described things that looked "worrisome" for mets, which is why the bx.

I visit a new oncologist on Tuesday; mine has retired. I'm building a list of questions. I finally shook off a 2-day screaming headache and am trying to pull myself together for whatever is happening next.

Is this "recurrence" or "Stage IV"? Is a mass possibly a lymph node with lots of cancer in it? I think the supraclavicular nodes are not from the breast "watershed" though. Should I make sure to get a PET/CT or some other type of scan ASAP? (I've never had a PET or a bone scan.) The MRI mentioned possible bone mets and quite a bit of edema.

How many tissue samples are generally required to "know" the kind of BC we're dealing with? I mean, if it's in multiple places, is it "the same makeup" in every place? I've read about how it's not always the same as the "originally treated" BC. Mine was "practically" triple negative.

Feeling rather shocked, numb, and exhausted. So grateful for this site...

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi Chirps

    I was dx 2 days ago with Stage 4 IDC and am reeling with shock. I was originally dx 6 years ago at age 40.

    Three weeks ago my lymphedema arm became very painful. I presumed LE or cellulitis and was given antibiotics. On Feb 25 I went to A&E as pain was getting worse. A D-dimer blood test was done. Level was raised. At the time I had swelling over supraclavical area and visible veins over the left side of my chest. An US confirmed a blood clot in my left internal jugular vein. Like you I was initially told that the clavical area did not present as a suspicious lymph node.

    Further test was a CT of chest, abdom and pelvis and showed a 29 mm shadow in my chest, close to a rib. I'm still not 100% sure of its location. Another CT guided biopsy ( fine needle) was done. The sample was poor but enough cells to confirm BC ER positive. The Her2 was inconclusive. I asked if it was in an internal mammary lymph node as an A&E doc seemed to suggest that it was from X-ray. However, no node cell was found in the biopsy. So maybe it's in the soft tissue of my upper chest?

    My first oncologist appointment is Wed and I have set a second opinion in motion.

    I wanted to respond with my support as it seems we are right at a similar point, having been disease free for 6 + years. I'm afraid I cannot answer your questions. I have many of my own. However I wanted to reach out to you.

    Several lovely ladies have helped me on this forum and I know what you mean by a life line. Feel free to keep in touch. These are dark days but I have been told it will get easier. Such a shitty disease. My heart goes out to you and I wish you all the best.

    Liz

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  • Emily2008
    Emily2008 Member Posts: 605
    edited March 2017

    I'm so sorry for this news.

    My understanding is that if it is breast cancer confined to the original breast and lymph nodes nearby, it's called a locoregional recurrence. A recurrence confined to the original breast is a local recurrence.

    A stage IV diagnosis is when the cancer has mets to a different area of the body. I'm not sure about this, as I've read different things, but I believe if it's confined to the nearby lymph nodes, it's locoregional.

    Ugh, I'm so so sorry. Please update as you get more information.

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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    Wow JackBoo! Thanks for sharing your thoughts and your support…

    The similarities are amazing. More than you realized! My neck CT report includes "There is occlusion of the distal left internal jugular vein with thrombus identified." And those visible veins on the L side of chest---you TOO?? None of my docs have paid attn to those veins. Thing is, none of my docs even mentioned this thrombosis until I read the report myself then asked. Apparently not a concern! Well, not relative to the "worrisome" other features described in the reports.

    My PCP had sent me to a EarNoseThroat doc, who does "neck" surgeries, but he consulted Oncology and then handed me off to the Onc bx folks. When he called me to report the bx results, I asked him if he'd be the one to do surgery on this and he indicated that he doesn't think surgery will necessarily be part of the treatment plan on account of the circumstances. I'm suspecting that it's partly the location and partly the fact that the mass is an "ill-defined region"…? My CT estimated it at 2.4cm x 3.1cm x 2.0 cm. MRI says 3cm x 1.7cm x 4.3 cm.

    Did your tests reveal other areas of concern? My chest CT mentioned a few small subpleural lung nodules (suggesting 6mo followup). The brachial-plexus-MRI mentioned things involving the manubrium, two ribs, chest wall, T7 vert body. These of course aren't conclusive of anything, but it's the kind of thing that makes it seem like we should be looked at with something such as PET/CT (as recommended in my MRI).

    Very good, that you're on track for a second opinion---putting that on my list.

    Yes let's stay in touch. Thanks for sharing with me. I certainly wish you all the best as well. I'll be reading other posts… Keep the faith!!

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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    Emily, thanks for the input. Seems like it helps to understand things if we know and understand the terms. What you say makes a lot of sense, and I guess I'll know more about this situation after meeting with new oncologist. Understanding this kind of thing helps when wanting to sort through and process information that's available.

    I'll be updating as I can. Thanks again!


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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi Chirps

    Glad to see your reply as I too was quite amazed to see the similarities between our cases! Have they put you on blood thinners for the Int jug vein clot? I am currently on a drug called Rivaroxaban. I have 4 days left of an intense 21 day course of 30mg a day. This drops to a maintenance dose of 20 mg thereafter.

    My CT showed a further 2 areas of concern:

    Thickened endometrial lining of womb

    Mild concentric thickening of upper GI

    • I have an US on Monday for womb. Docs think it's peri menopausal changes or the Tamoxifen I took for 6 yrs. They can't biopsy stomach area and I have a bit of gas, but nothing major so hoping its a hiatus hernia.
    • MRI planned so terrified about that and meeting onco on Wed.
    • Do you have a treatment plan yet.
    Yes let's stay in touch. Best wishes to you.
    Liz
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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi again

    I think I've been confused here. Your issue appears to be the mass pressing on the internal jugular vein where as mine is s clot inside this vein, caused by the mass in my chest.

    If the IJV is compromised other veins take over and blood is redirected through them, hence those blue veins showing in chest. This is what I was told.

    They prescribed anti coagulation drug to reduce my risk of pulmonary embolism. As if having a cancer recurrence wasn't enough to deal with!

    I hope you get some answers and sorry if I misinterpreted your post- it's exhaustion and worry,

    Liz x

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2017

    Chirps, So sorry to hear of your recurrence. What is the next step

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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    Hey Jack Boo, sorry so long to get back to you. Regarding the LIJV I don't think you misunderstood my situation; I think I have clot there ("thrombus") and I think it's caused by mass pressing on the vein. But I'm not clear on "what" about your tumor would have caused your clot. And I was under the impression that the JV empties the head, not the area on the chest where the increasingly-pronounced veins are. (is there more clotting in another spot?) But I also think I'm exhausted and having trouble thinking it all through! Feeling like it's difficult to keep up with things...

    No thinners prescribed for me; they didn't even tell me about the clot (neither my PrimaryCareProvider nor the EarNoseThroat dr specialist). They focused on aspects of the report describing the "mass" and the other worrisome-like-mets descriptors. When I finally saw the report myself and read about the LIJV clot I felt like "oh, right, something *can* be worse I guess, a debilitating PE while trying to figure out the rest!" So I asked PCP (email) and she said "these things tend to be stable" and said I could take daily asiprin to thin blood if I wanted. So I decided to ignore the clot also...

    When is your MRI? I hope it goes very well for you. We're so lucky to have these tools to help in deciding tx. I should have taken pain meds for my shoulder (mass pressing on ulnar & med nerves); that was a looooong test and it eventually hurt.

    Hope your U/S today went well. I'll see if you have a post on another thread.

    I'm seeing MedOnc early tomorrow and probably meet Nurse Navigator directly after. I still have NO PLAN --- the NN tried to back me off of setting up a PET/CT because I hadn't even met the MedOnc yet and I guess she's used to the doc being in charge... :) But hopefully someone checked into my insurance already (we talked about that). I see my pathology report online and the biopsied mass is ER- and PR- so far (no HER reported yet but I was TN before).

    Hopefully your "other" findings so far turn out to be nothing bad and that they don't discover more concerns with other tests.

    Does your arm still hurt? Is your LE impacted by all of this?? My LE person says she can't do anything until MedOnc gives clearance and she doesn't expect that to be anytime soon. I realize there must be priorities but ...

    So, Jack Boo, I hope you're holding up okay! I'll probably learn a lot more tomorrow from MedOnc. Will be back after that.


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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    Hi KBeee, I meet with my new MedOnc tomorrow morning for the first time. I'll find out then more about what my next steps are. THANKS for your kind words!

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi chirps

    I am glad to see your reply. I had been thinking how you were getting on. The shock of all this is simply dreadful.

    Here in the UK the protocol for any DVT is immediate anti coagulation medication. I take Rivaroxaban. The first 21 days is an intense dose of 30 mg and tomorrow I move onto the maintenance dose of 20 mg once a day. This is to a) prevent further clots that I am high risk of and b) to treat the existing clot. Blood thinners cannot dissolve the clot unfortunately the body needs to heal it.

    I presented with a swelling over clavicle so there was a suspected thrombosis there too. I have limited understanding of clots but was told that the presence of active cancer can spark them. People with a history of cancer, presenting with a DVT are routinely scanned, this was the case with me and then the chest mass was found. An IJV clot is very rare apparently. Aren't we the lucky ones!!!! But on a serious note there is no harm in asking again about anti coagulation therapy because of the life threatening risk of PE.

    If you follow the shadow is recurrence thread you will see that I am just at the start of getting a treatment plan- as you are.

    You said the nurse was hesitating about a PET scan? I have an MRI booked but haven't been offered PET.

    Good luck with everything. I'll follow you as you embark on a plan.

    Liz


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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    JackBoo thanks much for the further push about the DVT. I met with my new MO today and asked him about the DVT...he was concerned about it and put me on Lovenox immediately. I think he also said I'll be staying on this anyway, as part of my tx requirements... but that it's a serious mistake (PE risk) in his opinion to leave that LIJV clot unaddressed! There's no dose stepping with Lovenox. It's an injection I do myself.

    Exhausting day. PET/CT will be THU morning. MO expects results to show confirmation of multiple mets sites however the other possibility is that the cancer is only in the mass. On FRI I'll meet with R.O.

    Apparently surgery is not protocol in this kind of presentation. No news on HER2 status however it's soooo unlikely to be "not neg this time around" --- which means I'l dealing with TN again. Since it's TN, then (as I suspected) my tx will be radiation and chemo. He pointed out 2 diff chemo options that he'd recommend (one is a trial), if the PET/CT reveals the mess of mets he thinks is likely there. I'll dig these names out for another post.

    This MO as much as said that any other decent cancer center will be recommending the same tx. If you go for a second opinion *now* it can also delay tx starting because of the insurance hurdles on top of the other scheduling etc hurdles. HOWEVER if we do through the recommended tx and then are up against the wall looking for another tx option, *that* is when I should be looking for second opinion. I wasn't expecting to be told all of this; not sure what to think! I think this MO is brilliant but maybe I'm a pushover.

    You see your MO tomorrow and I'm hoping things go well for you!

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited March 2017

    Sounds like you have a good MO:) so you will end up with a solid plan.

    When you have all your scan/path information - if you feel you wanted a second opinion fast - I believe they can be sought online from certain major centres, for example:

    https://www.ucsfhealth.org/secondopinion/?gclid=Cj...

    (I think this one is about $700)

    Or


    https://www.eclevelandclinic.org/costAndInsuranceInfoHome



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  • Chirps
    Chirps Member Posts: 91
    edited March 2017

    Thanks for the info on those options, wildplaces, I really appreciate! That might be a good way to go, for some reassurances or for some new idea/approach. I'm not near any of the major places and I can't "easily" be gone from home for a long stretch. Still trying to weigh this out...

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited March 2017

    wishing you well soon a good solid plan that kicks cancer butt

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