Best Of
Re: Scares That Turned Out To Be Nothing
I think this kind of post is really valuable. We all need to be reminded that our bodies do weird things that have nothing to do with cancer. Most of my "scares" have been self-inflicted, but I have had one major one.
1) Shortly after beginning neoadjuvant chemo, I noticed while getting dressed that the skin on my affected breast had a pitted appearance. I rushed out of the room sobbing about how my chemo wasn't working and I now had IBC. After hyperventalating for about five minutes, I checked the breast again and the pitted skin was gone. Explanation? I had wrapped my towel too tightly around my body after showering and it had made indentations in the skin.
2) *MAJOR TMI GROSS ALERT* After round 3 of AC, I noticed that I had a small lump below the belt. My first thought was OBVIOUSLY metastasized cancer in the groin lymph node. So I kept poking and prodding the little bump and caused a massive infection that swelled into a huge abscess that was so painful it kept me from walking before it finally started draining blood and pus. (My husband was my fiancee at the time and I knew nothing could drive him away when he checked for me and kept me updated on how the draining process was going.) Turned out it was an infected hair follicle.
3) I have a tiny bump on the top of my head. After flipping out about skull/scalp/skin mets, a dermatologist declared it was a cyst.
4) I had non-itchy, red bumps that came on suddenly and spread all over my stomach, lower back, buttocks and thighs. I was extremely concerned about skin mets. They eventually resolved themselves. Bug bites or an allergic reaction to Zoladex are possibilities but to this day, I don't know what caused it.
5) (This was the bad one. )Found a hard lump on my mast scar under my arm. Ended up having a scary ultrasound and core biopsy. Result: B9 fragments of lymph nodes.
Re: Medicare coverage of post-reconstruction MRI
Hi @nurse_lizzie , Dealing with insurance denials is time consuming and not much fun. All health insurance providers have utilization management (UM) policies in place. The rationale from the insurer's perspective is that it promotes appropriate medical care at a reasonable cost. From the patient's perspective it can mean not getting medical care that they and their doctor think is a good idea. The reality is probably somewhere in between these viewpoints. UM policies vary between providers and are reviewed and updated constantly so it's tough to keep track of what is current. In my experience I have found it somewhat easier to access the private insurer's UM policies (although imaging and anything expensive like chemo tends to be sent out to another entity with a different name which makes finding info more difficult.) I have yet to find Medicare UMs in an accessible place and the toll free numbers to call about whether a procedure is covered sometimes don't have an answer. I have found Medicare much more up front about what they cover. My private insurance used to dishonestly deny based on my not having one of the particular reasons on their UM document even though I had one or more of the other reasons listed for coverage. I would have to appeal and eventually the denial would be overturned.
With Medicare your secondary insurance pays if Medicare does. I also have secondary insurance that will sometimes cover what Medicare doesn't but whether they pay in that case depends on their own UMs. If you receive a notice of Medicare potential nonpayment it's a pretty good indication that it won't be covered. From googling I've seen that Medicare does not cover surveillance MRIs for implants. They will pay if there is a rupture, enlarged axillary lymph node or lump present indicating that a recurrence workup or treatment might be necessary. If your doctor can come up with a reason that fits the Medicare UM then it is definitely worth appealing. You can appeal anyhow but you should include medical evidence (research published online in medical journals helps) and a letter from your doctor explaining why surveillance is medically necessary in your case (maybe the life span of the implants has been exceeded or you have an autoimmune condition?) This does not sound like a coding error or having treatment more often than recommended by Medicare, two other things you have to look out for.
Navigating health insurance can be like walking through a minefield. If your are having any treatment where coverage is uncertain I would recommend getting a cost estimate in advance. The No Surprises Act does not apply to those with Medicare but you know where you stand and you have some leverage in negotiating a lower payment based on the hospital's financial criteria. You can also have the MRI done at a facility where the cost is lower if you are willing to pay for peace of mind.
Good luck with getting this paid for. I'm not a health insurance expert but I have learned a lot from experiencing multiple denials, filing appeals and having enough of a math/science background to deal with the technical and medical terms.
Re: Starting Chemo May and June 2024 Support Thread
@bythebay I avoid people at all costs during chemo. I order my groceries online and go pick them up (it’s a free service). I send my kids or husband to the pharmacy or store if I need something (or just order it from Amazon). My doctor told me that around day 8 to about day 15 after each chemo are when the white blood cell count will be the lowest, so not to go anywhere near crowds during that time.
I actually bought a puzzle board and had a friend bring over some puzzles. Yep, I’m doing puzzles now. That’s how bored I am! But, it’s only temporary. I’m just trying to pass the time any way I can. I read a lot (when my head isn’t hurting), I’m planning our trip to Asheville, looking up recipes to try (for the week I’m feeling decent between infusions), etc. I’m trying to be as gentle on my body as I can, not pushing myself when I’m just worn out (which is most of the time!).
My dad flew down from PA yesterday to keep me company this week before my third treatment on the 15th. I don’t actually want anyone here with me right after my treatments because I mostly sleep, have a nasty headache, and generally feel like crap so I don’t feel like talking to anyone. Plus, I can’t sleep at night, so I send my hubby to the guest room, while I fidget all night long 😂