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Is it back or not? My gut says yes....

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Background: 52 yr female, bilateral IDC 2012,++-, no lymph node involvement, bilateral mastectomy, chemotherapy, Tamoxifen, and reconstruction. Recurrence left side 2017, radiation and Exemestane. Positive for ATM mutation. Now I have 2 suspicious non mass-like stippled enhancements BiRads4a (MRI w/wo contrast) in same area as previous recurred IDC (lower outside quadrant near axilla line). US scheduled. Last three to four months lost 15 lbs (140 to 125), no appetite, crave sugary sweets only, nausea after eating small amounts, deep fatigue, joint pain, leg cramps, night sweats, tender biopsy/reconstruct scar area and axilla line, possible small palpable lumps but could be fat necrosis or scar tissue, shortness of breath, chest pain around to upper back, increased headaches, insomnia, general feeling of "doom - something wrong." Question - what is the likelyhood that my gut is right and my aggressive cancer is back and possibly metastesized? Time for a second opinion if US fails to identify?

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  • meow13
    meow13 Member Posts: 1,363
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    Get to the bottom of it, if it is back find out as soon as you can.

  • wallycat
    wallycat Member Posts: 1,245
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    I'm so sorry you are dealing with this....I hope you can get resolution and confirmation of what you're dealing with.

    I will say that I have had several friends develop gut issues, lack of appetite (even males I know) and everyone says there's some weird bug going around that is hanging on and on and on. As to the masses, you could be right that it is fat necrosis.

    Post back and let us know what you find out; we'll be here holding your virtual hand.

  • moderators
    moderators Posts: 7,911
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    We too are holding your hand Medicating. Have you discussed some of your symptoms as possible side effects of Aromasin or here More about Aromasin? Please do let us know. We're all here for you, and glad you found us.


  • KBeee
    KBeee Member Posts: 695
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    The ultrasound is a first step, but I think your symptoms warrant further attention regardless fo the ultrasound results. Be sure to let your MO know. If he/she does not listen, then seek a second opinion and get to the root of your symptoms. You need answers. I'm hoping those answers do not involve cancer. Keep us posted.

  • jayca66
    jayca66 Member Posts: 8
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    Thanks all for the kind greetings and words of encouragement. I have an MRI, Ultrasound, and CT scan on the 11th (yes, all three to check for brain and lung mets) a trip to the gastroenterologist (high risk of pancreatic cancer due to ATM) and will hopefully end up in the clear and all the stress will be for nothing. It's like deja vu with my July 2017 recurrence on the same side...I will know either way by the 14th. Fingers crossed.

  • meow13
    meow13 Member Posts: 1,363
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    jayca, wishing you the best.

  • KBeee
    KBeee Member Posts: 695
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    Hoping your tests all come back clear. I know how having a recurrence ups the fear and anxiety. Once the “shoe has dropped”, it seems the other is always around the corner.

    Keep us posted

  • monarch777
    monarch777 Member Posts: 338
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    sorry to hear of your condition. I had many of your symptoms with deep lower back pain. My orthopedic sent me for MRI of that area. Mets to my lower back shocked us all. Hope your scans are clear. Hugs and peace

  • meow13
    meow13 Member Posts: 1,363
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    I sprained my back didn't know it at the time. I could hardly move. Ice was my saviour, for 2 days constant on and off ice packs and I started to recover. My back MRI showed no evidence of cancer.

  • pajim
    pajim Member Posts: 930
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    Something is definitely wrong but it doesn't have to be cancer. I hope the tests reveal the problem, whatever it is. [Feels from your description like it's GI related]

  • grrifff
    grrifff Member Posts: 75
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    jayca66- checking in to see how your scans went? I've had an ultrasound, 2 CT scans and 2MRI's in the last few months. PET scan on the 28th. It's nerve wracking waiting for results. Thinking of you and hoping for good results

    Jill

  • jayca66
    jayca66 Member Posts: 8
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    Hi! Mostly good news :) Brain MRI and thorax CT both came back fine. All nodules are stable at this time and likely benign. The breast MRI and Ultrasound are still inconclusive and show two small lesions that will be rechecked in 6 months. I have a bone scan next Friday just as a last cautionary look. With that said, the last two months have been horrible physically. Fibromyalgia on steroid overdose. Symptoms are too long to list but main ones are bone pain, tightness in chest, breathlessness, and excruciating pain in upper back. BII may be a simple explanation that has caused the roller coaster over the last year! I have been experiencing almost ALL of the symptoms that have gradually built up and gotten worse. So, there may be a removal booked down the road after bone scan. In the meantime I am fine!! 😁

    Jill I feel your angst and will keep you in my thoughts. I don't know about you, but I can deal with what I know, it's the unknown and waiting that takes its toll on my mind and body. Waiting for the shoe to drop. I guess at some point we have to learn to live with this disease even when technically cancer free. Good luck with your scan and keep us posted.

    Jane




  • jayca66
    jayca66 Member Posts: 8
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    So, it's me again. NO offense, but I had hoped I'd never have to unload on all of you again :( ;P

    Here we are at my 2 year anniversary of completing radiation for my 2017 left breast local recurrence (which occurred at my 5 year anniversary of original DX) and I feel like I'm heading down a really dark path again and maybe my gut wasn't wrong after all in 2018 (see above).

    Around about June 2019 I noticed some right side side hip discomfort - it started out feeling like a bruised bone, tender to palpate, and a bit of throbbing here and there - It did NOT feel like pain in the actual joint. It didn't go away, and has slowly progressed in intensity and is now bad enough at night or when I lay down that it throbs down to my knee and into my lady parts. Walking is ok, sitting is intermittent. Onc was notified and said try physical therapy and rule out arthritis. My horses are my physical therapy and my GP ruled out rheumatoid arthritis. (I see her on Monday to discuss the hip pain again). Fast forward.........

    2 weeks or so ago I get a chilling sense of Deja Vu

    My left (recurrent) breast started itching along the mastectomy line (itching was my first sign for every DX). The mastectomy scar itself is no longer fairly smooth like the other side, it shows darkening and significant swelling, as well as being indented more than usual. I rubbed the irritation,as one would, and felt a series of small raised lesions under the skin right above, and below the mastectomy line and heading towards my arm pit. The whole area from above, to on and below the entire scar is tender to touch. The lumps are not exactly hard pea lumps, more like clusters or rows of slightly raised irregularity if that makes any sense. Not ridges either. My reconstructed boob has drifted toward my armpit again, and I now get intermittent shooting pain that goes from from left side of the reconstructed nipple into my arm pit. Although I can't feel any lymph nodes swollen, my left neck has been tender and slightly swollen from collar bone to jaw. I have been so fatigued I think I could sleep 24 hrs a day or at least not move a muscle unless absolutely necessary. Depressed, and anxious and AGAIN the feeling of pending doom.

    I called my oncologist Tuesday morning and was in by 1 pm that day. My oncologist could feel the bumps and as I looked down I could actually see a raised bump/swelling in my skin just to the left of the nipple. When asked if she thought it was the implant, her response was a slow, "No, I don't think so". BUT reassured me it was likely nothing and then proceeded to book me for a PET scan next Thursday.

    My opinion? I am surely going to light up the PET like a Christmas tree.


    Your opinion?

    Thanks for letting me rant. I am terrified but somewhat resigned that this disease will kill me, sooner rather than later, and that since day one I have been on the rare side of things, including an ATM mutation, 2 kinds of breast cancer diagnosed two weeks apart at initial DX, and a recurrence that "never should have happened." Now this.....

  • sondraf
    sondraf Member Posts: 1,581
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    The right hip - are you sure it is coming from the hip? That pain profile suggests it could be coming from the lower back area, or something (not necessarily mets) hitting a nerve further up on the spine, or potentially some sort of compressed disk. Is it fine in the morning and gets worse by the evening? I ended up having mets in the sacrum and, having not had breast cancer before, went to the GP after a sports injury thinking I had, yet again, injured the SI joint (Ive been reinjuring it for 30 years, why would I think otherwise?). She just confirmed it wasnt a herniated disk and that was that. I had progressing leg weakness on the right side, and it was always worse by the end of the day. Three chiropractors could palpate the lump in there, but it didn't hurt or throb, and chiropractic was actually improving my range of motion and abilities. So to find out that was actually cancer eating away bone, well that was a bit of a shock. It is on the right side,same as my cancer side, but I really had more noticeable pain in the hip and the buttock than the pelvis.

    Have a look at trochanteric bursitis also - that fits quite a bit of your pain profile as well. Have you tried ice on the area? The PT suggestion may have been so they can have a look at the soft tissue and movement of your hips and any muscle weakness to address that before other concerns. If you don't see improvement after five sessions then that will rule out other potential issues beyond arthritis.

    Do keep an eye on the tingling area, however. If you ever lose sensation or bladder/bowel control, its emergency room time as those are cauda equina syndrome symptoms and needs emergency surgery and attention.


  • mightlybird01
    mightlybird01 Member Posts: 161
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    Have you considered "breast implant illness"?

    https://www.nwhn.org/breast-implant-illness/


  • jayca66
    jayca66 Member Posts: 8
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    mightlybird01, I have considered breast implant illness, however my history points to cancer. If the PET comes back clean I may just ask to look at the possibility of implant issues and have these things taken out to be on the safe side. :)

  • simonerc
    simonerc Member Posts: 154
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    Jayca66,

    Sending strong thoughts your way and crossing fingers!

    Yours in ATM’ness


  • OnTarget
    OnTarget Member Posts: 124
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    Hoping for you!!!

  • KBeee
    KBeee Member Posts: 695
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    Hoping all is benign. Please keep us posted. Thinking of you.

  • jayca66
    jayca66 Member Posts: 8
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    I know this is controversial and quite possibly stress-inducing, but I only just found out a few days that you could illuminate your breasts (implants are best) with a flashlight to look for abnormalities! I so wish I had known this years ago so I could compare. Being the self-advocate that I am, I read multiple scholarly papers on the subject, then gave it a try last night and had my husband take some pictures. I'm attaching the pics of both the healthy right breast and the left breast that is in question, resulting in a PET scan next Thursday. (dark circles are nipples).

    What do you all think of this technique? If nothing else it's a unique way of seeing inside your breasts! My apologies in advance if they are offensive!

    image

    image

  • DorothyB
    DorothyB Member Posts: 143
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    interesting concept

  • smc123
    smc123 Member Posts: 30
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    Jayca66, That’s is so cool...how did you do that? Were you in a dark room and shined a flashlight on your breast/implants

  • pupmom
    pupmom Member Posts: 1,032
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    How do you know what an abnormality looks like?

  • jayca66
    jayca66 Member Posts: 8
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    I was in my dark bathroom with a flashlight. I guess one mever really knows if there are abnormalities but studies have suggested that there is a high degree of accuracy on predicting issues. I'll let you all know after the 30th if my areas of concerns are valid. I don't know what else to do with my time right now..

  • smc123
    smc123 Member Posts: 30
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    thanks for sharing:

  • jayca66
    jayca66 Member Posts: 8
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    Happy New Year everyone. I hope each and every one of us has a healthy and happy 2020!

    In regards to the flashlight - you really don't know if anything is abnormal I suppose! From what I read, the medical apparatus called Breastlight is more of a tool to identify any changes over time. I just found the whole thing interesting and a wee bit of a distraction! No PET yet, first go around insurance denied, but I just got notice that it has now been approved. Probably for next Thursday. Fingers crossed!

  • KBeee
    KBeee Member Posts: 695
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    Thanks for sharing. How'd your appointment go?

  • Leslie735
    Leslie735 Member Posts: 2
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    Praying your test goes well!


    I actually read about breast light a couple years ago and tried it myself but with a regular flashlight got myself in a tizzy over it because I found a funny looking vein. It's been a year now and it's still there but has gotten smaller I believe so maybe a scar or injury of some sort. Looking forward to reading an update. 🙏❤️