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When it rains…

sarahmaude Member Posts: 301
edited May 2022 in Just Diagnosed

So last week I had my breast MRI. That was Tuesday. On Saturday I felt a faint bruised area on my right upper arm. Thought I’d bumped into something. On Sunday, the painful area had spread. Yesterday (Monday) it hurt enough I called the nurse practitioner who said to apply warm compresses and take Tylenol or Advil. During the night the pain became almost unbearable.

I measured my arms this morning, and the right one was 1.5 inches greater in diameter than my left. The arm was warm and extremely painful. I called back to the NP, and alter some back and forth, I was told to come right in for an ultrasound of the arm. After the procedure, I found out that the IV site I had for the MRI contrast had clotted and the clotting had moved into the multiple veins in my arm. I’ve got Deep Vein Thrombosis (DVT) in my upper arm. So today I started Xaralto, a blood thinner.

I’ll be on it for some unknown period of time, meaning any surgery will be delayed. To add to my stress, my FISH test is still pending after 2 weeks. And after the DVT diagnosis, they decided to cancel my upcoming MRI guided biopsy and immediately do an ultrasound biopsy instead. That procedure revealed a strange satellite tumor. It looks like a crescent laying over the rounded main tumor. I got several more core samples biopsies as well as two more markers in the second tumor. I’m worrying that the overall size of the tumors could preclude the lumpectomy I prefer. And I’m so tired of all the uncertainties. And my arm hurts.

I see the MO and PS tomorrow, so I’ll learn something, but it’s taking longer to plan my route than I expected. I guess that’s the thing with this BC survival journey, it’s unpredictable, and I’m really having to work to stay in the moment while remaining flexible about the upcoming days.

Anyone else weary of “rainy days”?


  • beginagain22
    beginagain22 Member Posts: 98

    SarahMaude, that stinks! I am sorry to hear about your troubles. It does seem like everything takes too long. I hope you get some good news tomorrow when you see the docs

  • Member Posts: 1,434

    Oh, SarahMaude, that's awful. Terrible experience and what a shock it must have been to find out about the DVT. And now the delays. I'm sorry. No advice to offer but just some cyber hugs, gentle ones, to not hurt your arm.

    I had a CT scan a couple of weeks ago and bled like crazy from the IV site for the contrast injection. My inner elbow had a lot of residual blood under the skin for a few days, forming a bit of a bump. It never in a million years occurred to me that a clot could form from that site. Yikes!

  • rah2464
    rah2464 Member Posts: 1,192

    SarahMaude I am so sorry you had this complication but just wanted to thank you for posting your experience. Your willingness to share your story may definitely help someone else to get the emergency care needed.

  • sarahmaude
    sarahmaude Member Posts: 301

    BeginAgain22 Thank you for you commiseration!

    Beesie You captured my feelings precisely. Looking forward to appointments today.

    rah2464 I feel a responsibility to share anything that might helps someone else. I made sure to use my key words so hopefully someone else could stumble upon my story and self advocate in a similar situation.

  • sarahmaude
    sarahmaude Member Posts: 301

    The sun is peeking out!

    Just got my pathology result on the fresh biopsies...and they are benign! Says they are likely fibrous changes caused by my first biopsy. The tissue will still need to come out with the main lump, but hopefully they won't have to take as much margin. I'm still hopeful they can shift my DDs enough to allow me to have a lumpectomy.

    Arm is feeling at least 50% better today, and I slept last night. I'll post later tonight about my MO and PS appointments.

  • Member Posts: 1,434

    Yay! I'm glad you got some good news!

    Hope your appointments today go well.

    More cyber (((Hugs)))!

  • sarahmaude
    sarahmaude Member Posts: 301

    Beesie, thank you! I can feel those hugs through the ether.Smile

  • sarahmaude
    sarahmaude Member Posts: 301

    After appointments, I'm at partly cloudy with a chance of rain.

    Good news,

    • Met the MO and loved her. She's down to earth, personable enough, and her plans and outlook were very reasonable to me.
    • Blood thinners won't substantially delay surgery, MO has a plan for that...
    • FISH test is back. Results are HER2-, so no Herceptin prior to surgery
    • My arm feels much better
    A little disappointing
    • PS was a no go. He said what I was asking for was "too risky" and that I should have a Mx. He's the first surgeon I've seen who said that. He also just seemed distracted and uninterested in me. They set an appointment for 11:45, and I was there until 1:30, and I would say he spent at most 3 minutes with me. He started talking and then left the room. When he came back, he basically said, no to anything other than Mx to tissue expanders to implants.

    I'll see my BSO on Monday, and see what's next. I have confidence that she'll provide the best possible options.

  • abigailj
    abigailj Member Posts: 90

    Have you consulted with any other PS? In my case the BS (who was the one that removed the cancerous and surrounding breast tissues) is the one who told me my surgical options. The PS was for recon options. My options per BS were 2 lumpectomies which would have then required radiation and then some recon to make the breasts look normal-ish again or a lumpectomy on one side plus MX on the other or aBMX. When I had my surgery she did her part first and the PS came in and did the recon work (I chose to have BMX with immediate DIEP recon in one very long surgery ). . I hope your BS can clarify your options from her/his perspective and that you can then proceed to consult a different PS should you want some kind of recon. Hope your treatment goes well!

  • sarahmaude
    sarahmaude Member Posts: 301

    abigailj, I haven't talked to another PS yet. I see my BSO on Monday, so I know she will help me with my options. If I end up with Mx, I do want to consider the DIEP recon in sequence with the cancer removal. I'll have to go to outside of my community to one of the larger breast centers for that procedure. Fortunately, I'm less than 2 hours from two great choices.

    I was so turned off by that PS I never want to have him involved in my care. Maybe he was hangry. Maybe he wouldn't make enough money on the surgery. Maybe he's just not that into helping women with BC. Something was "off" and therefore, I'm not too invested in or discouraged by his cursory opinion. He just didn't spend enough time with the case to be so dismissive.

    Thanks for your reply and story. It really helps.

  • salamandra
    salamandra Member Posts: 675

    Hi Sarahmaude,

    I'm so sorry about that crappy experience.

    If you have time and energy for it, it might be worthwhile to drop a note to his medical center about your experience. You never know if it could do some good. I would probably look for an ombudsman or maybe the head of his department.

    I think you are 100% correct not to go back to him. I hope you are able to find someone better. Wishing you clearer skies ahead!

  • hlya
    hlya Member Posts: 29

    Hi, Sarah, how could you have blood clot as the symptomI never heard of that.

  • sarahmaude
    sarahmaude Member Posts: 301

    Hiya, blood clot wasn’t a symptom, it was triggered by the IV in my breast MRI. One of those rare but possible things that can happen with lots of different testing. And though some people with cancer more advanced than mine can have blood clots caused by their body’s response to cancer, my MO who is also a hematologist is confident that isn’t the case for me. I expect to finish my course of Xarelto toward the end of August.

    I ended up doing well in my surgery, and all other needle sticks are going well.

  • katg
    katg Member Posts: 160

    I too had a Breast Surgeon. I got my choices. Lumpectomy was never a real choice. The MO went over my treatment choices. I had plastics in with my BS and she did her part, and he did a skin saving mastectomy. My nipple had to go, my size is my normal, but it is my skin. I get to keep my nipple on the right. Choices. Ask for choices.