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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2021

    happy2beme, I like your username. Keep us posted. It's scary for sure. Sending strength and hugs.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited January 2021

    LilyWasHere - Recurrence or a new cancer. It seems very murky. Maybe overconfidence in the success of treatment leads to a conclusion that it must be a new cancer vs recurrence. My oncologist said there was no way to really know since cancer mutates so much. I'm curious what your oncologist says. It is BC #3 for me, and oncologist thinks each is a """new"""" cancer rather than recurrence. 7 years between the first two, both on left. No symptoms, mamogram with followup imagery found both. 3 years between cancer #2 on left and cancer #3 on right (after a bi-lateral). The "symptom" was a swollen right arm. Ultra sound at urgent care for possible blood clot. No clot but lots of fluid. Eventually Dx'd as cancer, again. Even with a bilateral, some breast tissue remains. The R-breast was tested/sampled for cancer after removal, none found. After BC #3 oncologist had genetic panel specific to BC, over 20 mutations looked for, none found.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. No symptoms, found with mamogram and followup imagery.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Started anastrozole, joint issues immediately. Stopped. Afer joints cleared up started tamoxifen. No symptoms,found with mamogram and followup imagery. PET showed no metstatis.

    2019 ER+ R-axilla. Right arm swollen, clot suspected. But turned out to be tumor causing lymphedema. Taking Ibrance and Arimidex. CTs seem confusing.



  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Thank you, Ladies. I had my physical today, the first one since my diagnosis and also with a new PCP. I have implants under the muscle and I had skin and nipple-sparing BMX. PCP checked the breast to look for lumps and I didn't want to say anything that ILC doesn't create any lumps and it is just a waste of time. Now, I wonder what are the signs of ILC local recurrence in the skin, the muscle under the skin, or lymph nodes. I want to know what to look for. My DH read somewhere that only 12% of recurrence cases are found from the doctor, the rest are caught from patients themselves. MO told me after BMX that I don't need mammograms since I no longer have breast.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2021

    LillyisHere, it is correct that you would not get mammograms. If there is anything of concern, the doctor may order an MRI with contrast. Anything of concern on the skin or lymph nodes can usually be checked with an ultrasound and biopsy or fine needle aspiration. I found my local recurrences myself, every time. Are you having symptoms you are worried about?

  • happy2beme
    happy2beme Member Posts: 5
    edited January 2021

    thank you so much!

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    The only local symptom I am having so far is that where the cancer was located and a brutal biopsy was done, yes 4 hr biopsy where I was poked many times created a large hematoma. The area looks dark like a bruise. It is been 18 months since the biopsy was done and 15 months since the breast was removed. I don't see any reason for a bruise to show up right on the same spot.

    Also, it is been several months I feel a spot on my sacrum that keeps hurting but I'm not sure because of the exercise or something else. I will also have a US in my abdomen area. Probably it is nothing and I have a feeling that one of SE of AI that is not written in the books is that makes the nerves over-reactive towards pains and aches. My theory this one :)

  • happy2beme
    happy2beme Member Posts: 5
    edited January 2021

    Thank you Astrid. Yes, so many concerns. I will have to wait till my appt on Tueday. I sure hope I get some good answers and a path forward.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    H2BMe, here's hoping for answrs and happy results.

    Lilly, hi!

    I had ILC in right mx breast in 2012. It was a year out from silicone implant ops.

    I thought for awhile it was necrotic tissue. Rock hard lumpy areas. Didn't feel like the ductal lumps I'd had before.

    Also,wasn't like everyone's description of 'sheet like' stuff. was really unevem jagged, pretty large areas.

    I was shocked it was ILC. They diagnosed with u/sound then core biopsy like buttons machine described. Good luck with this.


  • ucfknights
    ucfknights Member Posts: 102
    edited January 2021

    hi, ladies!
    how did you know you had or suspected mets? feeling vulnerable amd sad

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2021

    ucfknights, in looking at your emtire posting history, it seems that consistently you are much more anxious about your mom’s situation than she is, and often not in proportion to what the realistic situation is. Why are you concerned

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Thank you Astrid and Buttonsmachine.

    Astrid, did the color of the breast where ILC was found changed? Where you able to see any changes with the naked eye? Also, what happened after ILC was found?

  • moth
    moth Member Posts: 4,800
    edited January 2021

    ucfknights, a bug bite appearance might be nothing . Or it might be something. Generally speaking symptoms which persist for 2-3 weeks need investigation.

    Does your mom's cancer agency have counselling resources? They're usually available to family members and cargeivers. Your anxiety about her health is troubling you...i think you need help addressing it so you can approach with more peace and calm.

    Best wishes


  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2021

    With my recurrences, there were lasting, persistent, and increasing changes.

    It could be a new pain, a new area of skin redness, or a new lump. It might start out as a subtle change, but the key here is that when it's cancer it does not go away. I cannot emphasize that enough. We all have weird body things that come and go, but if you have an unexplained change that persists over several weeks, and even slowly worsens, it needs to be checked out.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    Hi Lilly,

    No bruise or anything visible to naked eye.Touch only.

    Are you getting it checked out soon?

    It took me awhile to get mine checked because as I said, I told myself it must be necrotic tissue.

    They did an u/sound and then seeing something, did biopsies.

    Thinking back , they did the sterotactic upside down one, as well as an aspiration type. Hope this makes sense.

    Please let us know how you go.

  • happy2beme
    happy2beme Member Posts: 5
    edited January 2021

    Hi All,

    I posted a couple of days ago about my 5 sclerotic lesions. Thank you to all of you who provided a reply- so helpful!

    I had a follow up PET on Thursday. It showed no hypermetabolic activity and no new sites. I am so thankful but also I am so perplexed. I won't meet with my Onc till Tuesday. I have read that sometimes sclerotic (osteoblastic) lesions don't show up on PET scans.

    As might be obvious I am one that prefers more information to less :) Does anyone have experience with negative metabolic activity still resulting in mets?

    Thank you all in advance for your insights.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    H2BMe

    It seems to be great news...

    I get your anxiety here. Let's hope your Onc appt can confirm for you, or you get a confirming scan for peace of mind.

  • happy2beme
    happy2beme Member Posts: 5
    edited January 2021

    Thank you Astrid!

  • Rambros
    Rambros Member Posts: 78
    edited January 2021

    Great news happy2beme...I had 1 sclerotic lesion show up on a CT scan a year ago. After that I had both a MRI and a bone scan with SPECT of the spine. Neither of the follow up scans found any concerns so my doctor did not think it was something to worry about (hope she’s right). I think you should feel good that the PET scan was clear.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Thank you, Ladies. I have the 6 mo appt with MO in the middle of February.

  • Anx789
    Anx789 Member Posts: 168
    edited January 2021

    Hi All, a couple of days ago I felt a lump on my cancer breast near the breast bone(bet 10-11 o’clock) this is freaking me out. Last week I also had a deep throbbing pain in my lower back close to the spine under the muscle for 3days but went away with Advil. I have no pain in movement so my doctor did a urinalysis that came back ok. I am also dealing with dry throat for a month now, my mind is going the dark side. I’m seeing my onco on Monday, what kind of imaging/test would I expect since I had MX, no reconstruction. My anxiety is up the roof, here we go again 😔 I am 2 years post MX and on Anastrozole

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Anx789, I had a lump on the same location as you that showed up just before BMX, and you know what it was? A lump of fat! Probably you may have the same thing.

    I am taking letrozole and I believe I am very sensitive to pains since I have been taking this medication. I have aches and pains that come and go. I had US of my abdomen on Tuesday that didn't show anything suspicious. Also, I have tennis elbow, knee pain, back pain that I never had before letrozole era. I believe most of us complain about these aches and pains because AI does something to our nerves to feel these unusual pains.

  • Anx789
    Anx789 Member Posts: 168
    edited January 2021

    LillyIsHere, thank you, Ihope you’re right but this lump is hard and round just outside my scar line.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Anx, mine was in the chest area between breasts, slightly closer to the one that had cancer. In case yours is not fat, can it be a scar tissue that has shifted?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    Hi Anx

    Your anxiety is understandable. Monday is not too far away. I would think ultra sound first. If suspicious, then a biopsy from lump.

    Let us know how you go.

    Astrid.

  • Sabbymama
    Sabbymama Member Posts: 103
    edited January 2021

    Hello Ladies,

    I think I'm probably being a bit paranoid, but I have some concerns about the pain I've been having in my arm/shoulder joint since my mastectomy last April. Before surgery, I never noticed any pain in that area, but it has gotten progressively worse, especially since completing radiation therapy. In my pre-surgical scans, the CT noted "bone islands" on the head of my humerus, my right hip, and a couple of other spots. A bone scan showed uptake in my spine (T8, T9), sternoclavicular joint, and the humeral head, but said that it is likely degenerative changes. I've never had a Petscan. My oncologist suggested that physical therapy should help with the pain in my arm/shoulder, but after a month, it is not making a difference at all. Although it is probably nothing, I can't help but worry that it is possibly mets to the humeral head. I had positive lymph nodes with lymphatic vascular invasion and extranodal extension, so it is always in my head that cancer may have spread. I've worked with a therapist regarding my fears, and I assume that the chemo, rads, and anastrozole would take care of any cancer cells, but I can't shake them. I'm curious to see if anyone else has experienced similar pain before being diagnosed with mets. Should I insist on a Petscan? Or just have a little more faith? :)

    Cheers,

    Sabrina

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited January 2021

    Sabrina, I had the same pain and panic as you describe after BMX, cancer side shoulder where lymph nodes were removed. I was in such pain and so worried. MO ordered x-ray that didn't show any problems. I asked another doctor who told me that during the surgery, they rotate the arm in so many directions and that may have caused an injury. I googled, and read that this happens in 30% of cases and can take up to 2 years to resolve. I was lucky that took me 6- 7 months to be back to normal. MO recommended Motrin and warm pads. I didn't follow her directions but you may give it a try and see if it gets better.

  • Sabbymama
    Sabbymama Member Posts: 103
    edited January 2021

    Thank you LillyIsHere! That does make total sense and my pain is on the surgical side. I appreciate your input!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    You may find more input to your concerns if it is posted in the Not diagnosed with recurrence/metastasis but concerned thread. That one gets a lot more visibility than this one tends to get.

  • Anx789
    Anx789 Member Posts: 168
    edited January 2021

    Astrid, what kind of treatment you had on your first recurrence

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    Hi Anx,

    I had a wide excision on left mastectomy side, followed by radiation and hormonal tx.

    I'm hoping the best result for you on Monday.

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