Wow, I *really* don't want to be in this group
I hate being back on this board.
I had DCIS 10 years ago, and had really moved on with my life. Married, two kids, pandemic puppy, doing life and not thinking about cancer *at all*. I was sure, in fact, that the lump I found a month ago was going to be nothing.... but it wasn't nothing. It was 6mm of IDC, ER+/PR+ HER2-.
Coincidentally I developed sciatica in the last month or so, which didn't shock me because I've had back & core issues for years, and I've been a desk jockey (too much sitting) for 6 months, but of course everyone is worried about bone mets. So far I've had X rays of my back, hip, and femur and nothing shows mets - orthopedist believes degenerative disease in my back is causing radicular pain (whee!), but I am having a PET/CT scan soon to check everywhere else. Needless to say I'm terrified about what the PET/CT will show. It's really hard not to go to the bad place mentally. I went to a *very* dark place 10 years ago during this waiting phase and it's hard not to go there now.
Any encouragement or suggestions to help me stay out of the bad mental place would be most welcome. Thanks.
And, sorry to be back. No offense.
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So sorry to hear of your new diagnosis, sunshinegal. We all understand how devastated you must be feeling. Wish I had a magic wand to make it all go away, or at least to help with the damn anxiety of it. Be kind to yourself and try not to worry. We'll all be here to help you with whatever you're facing. My very best wishes to you.
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Sorry you find yourself here, again. Same here. Never wanted the first dx, who does, and certainly never wanted a 2nd! I hope once you get through the preliminary stuff and have a plan you'll be in a better headspace! I found that to be the case for me - the waiting was the hardest in many ways!
This community has been super helpful to me and thankful for it!0 -
sunshinegal, I wish I didn't have to welcome you back!
Second timers... we're a large group. What many women with breast cancer aren't told by their doctors is that once we've been diagnosed a first time, we are actually higher risk than the average woman to be diagnosed again - not with a recurrence (that's a separate concern) but with a completely new breast cancer which can develop in either breast. For all women, our risk of breast cancer risk increases as we get older, and this is also true for those previously diagnosed, which means that the further out we are from our first diagnosis, the higher risk we become to develop breast cancer for a second time.
Your back and hip sound like mine. I'm glad the xrays showed only degenerative disease. Hopefully nothing more serious than that shows up on the PET/CT. Good luck!
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The waiting is the worst. I let myself have an epic meltdown at one point. Somewhere between the thoracentesis which confirmed mets and the biopsy, which did not produce many treatment options. (TNBC) One of my favorite movie lines is from an old Julia Roberts romcom (1995), Something to Talk About, where she says: "And I just don't have time for the nervous breakdown I deserve, so please, don't ask me to stop and think!" Couldn't have said it better myself. So I made sure to take some time to feel all my feelings about this and just wailed. Then I got on with it. I'm back in treatment mode, somewhat emotionally disconnected and focused on what ever is next. I'm sure I'll schedule another emotional wtf rager down the road - because, cancer. Right?
I don't think, unless you're in the middle of it, people have any idea how emotionally exhausting this process is. I've honestly had to ask myself whether I can do this again. This really sucks and explaining it to the cancer free is frustrating. My friends just automatically assume that the first instinct is to fight and be "brave" and "you can beat this." My dark place is "what if I don't want to." Treatment is a yes or no question.
The ultimate answer for me was to have a massive tantrum, cry, scream, feel sorry for myself and then when I purged the anger I decided, yeah, I've done this before, I know who I am, I know what I am capable of, I know I am strong, I am resourceful, I deserve to live so I decided to stfu and started focusing on what I can do to maintain or improve my quality of life. I knew 10 years ago that there wasn't a cure, and on the upside - I have had 10 years in remission and I am so grateful for that. I know today that there are more treatment options and newer treatment options are on the horizon, so I'm okay with forging ahead and taking whatever comes my way. Oh, and after my aforementioned tantrum, I bought a punching bag! Excellent purchase. Worth every penny! I beat the crap outta that thing every chance I get! (there is also lots of swearing)
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Just want to chip in here as I have had both a degenerative disk event (L5/S1 in '16 that could only be described as a blow out - prolapse is too sanguine a term for what happened) and straight to mets cancer diagnosis (L3,L4,L5 and sacrum) in '19. Degeneration was WAY more painful and obvious, happened right away, drove sciatica and neuropathy (which I have to this day in my left big toe) and was entirely a result from sitting too much/stress/core loss. It felt like liquid fire going down my leg and in my lower back and it took a regimen of muscle relaxers/amitriptyline/naproxen to get under control.
The sacral met crept up like a thief in the night (I have no pain from my lumbar mets). A twinge in the hip, a twinge after walking too far, then I twisted and I thought it was another injury similar to many I had done before. The difference is that it didn't get better, and slowly but surely got worse, the pain never quite went away.
Long story short here, but the lack of xrays showing anything other than degeneration and the short term nature of the sciatica makes it all look pretty promising. Its just that insidious, unknown nature of cancer that to those who have never walked this path, cant understand the anxiety and turmoil that waiting for results generates.
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Remember, a PET scan can pick up more detail, but it can't tell the radiologist WHAT it is. I had to have a biopsy after a PET scan, and it turned out to be scar tissue. So they're also used to rule out problems, not just confirm them.
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Thank you all so much for your replies! I wish I could give each of you a hug.
Beesie, I remember you from 10 years ago! You were so helpful then, and I'm sorry to see you're in this club too.
Thank you MindiG66 and LW422 for your empathy.
So many helpful thoughts here -- from punching bag (told DH I want one for the basement) to letting myself melt down. GR4C1E, I loved this: I know who I am, I know what I am capable of, I know I am strong, I am resourceful, I deserve to live. My mom said I'm the strongest person she knows, and when I stop to think about it, yeah, I am actually strong AF. I've run a marathon, I've birthed 2 kids without medication, I've traveled the world, I'm the primary breadwinner in my family, I handle all the finances, and I am currently the favorite parent in the house. And yet I feel totally vulnerable, utterly betrayed by my body, fearful of my mortality, and desperate to protect DH and my children from what this might bring.
I ran across a couple of phrases on another thread that really spoke to me: Don't rehearse a tragedy and When you worry about something you're suffering twice. I like this perspective.
SondraF thanks for sharing your own sciatica experience - it sounds like you had an even more severe case than what I have which I wouldn't have thought was possible. It's encouraging to hear you distinguish it from your mets experience. And AliceBastable thank you so much for that reminder that PET scan results can later turn out to be benign or insignificant. I hadn't really realized that.
Still trying to get the PET/CT scheduled, so it'll be awhile before I know anything...
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Finally got the PET/CT scheduled...for next Friday.
The breast surgeon also briefed me today on the tumor board discussion of my case. There is agreement that an axillary node dissection should be done even if the scans come back clean. This will be complicated in my case because I've already had a sentinal node dissection and thus will have scar tissue in there. She said repeatedly that this will put me at higher risk for lymphedema.
Do you think a second opinion would get me any different recommendation? Last time I got a second opinion from Dana Farber and they agreed with what this hospital thought should happen. I also have an appt with the plastic surgeon for Tuesday. I'm told that surgery should happen in the next 3 weeks. My son's b-day is 3 weeks from today. I don't want to celebrate his b-day carrying a stupid drain around and being in whatever amount of pain. BTDT, drains SUCK. And I have work stuff in the next 2 weeks to try to schedule around, and this all amounts to a giant BLAH.
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An axillary node dissection? Why? You have a small cancer... odds are that the other stuff going is caused by arthritis and normal aging. To me an ALND seems excessive and unnecessary, if an SNB can be done a second time, which to my understanding it can be ( https://pubmed.ncbi.nlm.nih.gov/25515197/ ). I'm not an expert, of course, but I do think a second opinion would be a good idea.
Did you have a lumpectomy or MX with your with first diagnosis? More commonly an SNB is done for DCIS only with a MX.
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MX the first time (with implant reconstruction).
The surgeon said that my case is unusual and there aren't clear protocols (?!?!). IDC ten years after DCIS... I'm not sure I'm getting what's so unusual. They're obviously worried about mets but I don't have a good understanding of what the normal criteria are for doing axillary dissection after SN dissection.
This is a reputable hospital and she's got a respectable background. Unfortunately, my previous team at this hospital is no longer - my breast surgeon retired and my plastic surgeon died.
Maybe I'll reach out to Dana Farber for a 2nd opinion. Unless there is another institution that would be better?
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Ah, the MX last time explains the SNB. So this is a recurrence or new primary after a MX - which is unusual in that it only happens in approx. 1%-2% of MXs. But when you consider the number of MXs that are done each year, 1%-2% is a lot of women.
There are a lot of women who've through this site who've been in your situation. You might want to read through some of those threads to get an idea of how this had been handled in other cases. Here are a couple of threads on this topic:
Topic: Local recurrence after mastectomy and radiation https://community.breastcancer.org/forum/106/topic...
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Topic: Recurrence after bilat mastectomy? https://community.breastcancer.org/forum/88/topics...
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Sunshinegal, I am sorry to hear of your recurrence. The good news is that it seems like small cancer and you are in a location of some really good hospitals. As soon as I got my diagnose, I got a second opinion from MassGenaral and the third opinion from Dana-Farber.
Is your recurrence on the same breast/location as the first time?
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Sorry that you had to return here Sunshinegal after being clear for so long, it stinks! I figured I would share that I also had BMX and removal of sentinel node in 8/2016 and had a recurrence in 6/2020. My recurrence was in the axilla and chest wall same side as original cancer. I was able to have a ALND without any issues. I also had chemo, radiation and I am currently on Xeloda.
Yes they told me I am at an increase risk for developing lymphedema of course due to ALND and radiation to the area. I also have implants and that is a concern but so far so good. I had my surgery 10/20 but of course it is a lifetime risk.
I know it's a really difficult time because really who wants to deal with this again! Just try to keep thinking positive thoughts because we can't change what is there or not there. I literally lived this last year one day at a time, jumping each hurdle as it was in front of me. Obviously it is normal for all of us to automatically to dark thoughts, as long as we don't stay there long! Cry, scream, punch a pillow , dance ,exercise or whatever relieves your stress and then move on
Best wishes with the PET, keep us posted.
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LillyIsHere, my first tumor was so large it was basically the entire breast, so I guess yes, this one is in the same area? This one is at the 1:00 position. What's weird is that I can't actually feel/find the new tumor now; the biopsy must have broken it up quite a bit.
Cookie54, I'm glad to hear you're LE-free. Do you take any particular precautions? The only precaution I took for 10 years was not having my BP checked on that arm and not getting any injections on that side.
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I would ask about getting an L-Dex test before the surgery to get a baseline...and then you periodically get the test afterward. It measures how well your fluid is circulating and can pick up a potential problem with lymphedema before you can even see it. Helped me with lymphedema issues I never would have known I had! I wear a sleeve everyday.
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Thanks, kathabus! I'm keeping notes about the various tests I should ask about and will add l-dex to it.
The PET scan is coming up on Friday and next Tuesday I'm having a lumbar MRI. Today I met with the plastic surgeon - new because my previous PS (whom I loved) died - and the new guy seems really great. We talked through the surgical options for my lumpectomy and he put in an order for a chest MRI with and without contrast. I asked him for some valium b/c I get claustrophobic in there and it's a long procedure. Bonus: I had the same plastics nurse from 10 years ago. She remembered me and took over for the nurse assigned to handle my appt today when she saw it was me. It was really nice to see a familiar face.
On a different note, I've never had a PET scan before. I read on one BC patient's blog that at her first PET scan she was told she couldn't move for an hour after they injected the nuclear-sugar-whatever-it-is. Is that how it works? Do I have to lay completely still for a freaking hour? *Before* having to lay still during the procedure? If so, I might need valium for Friday!
Other random info: (1) I have a 2nd opinion appt at Dana Farber on Apr 19. (2) I'm going to lobby to hold off surgery until the week of Apr 26, so that I can celebrate my son's 9th bday on the 23rd.
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No, you don't have to lay completely still! At my facility you lay on a bed, they give you warm blankets, turn down the lights and you just rest. You can move, turn over etc. but no reading or watching movies. I often schedule my PET scans after work so I take a nap. All the best.
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Thanks, exbrnxgrl. That's good to hear. I wonder if I could listen to a favorite podcast or program as long as I wasn't watching it. I'll ask, and have a few options ready.
Scanxiety is going up, not helped by articles like this one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58826...
Scan is Friday morning and I'm told we may get results by Friday afternoon. It's gonna get real, real soon.
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My facility does not allow you to listen to anything, no music, no podcasts. Any activity, mental or physical, can increase the uptake of the nuclear trace injection and falsely show areas of concern. Facilities do vary but they don't want any activity on your part that will encourage uptake due to activity (which could be falsely interpreted as something more serious).
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exbrnxgrl - is that true for nuclear bone scan as well, or just PET?
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sondra,
I honestly don’t know. I have never had a nuclear bone scan, only PET and DEXA scans. Good question
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In my experience- when I go for my PET scan, afte the tracer but BEFORE the scan, I am usually left alone in a room with a recliner, the room has a TV but I usually bring my IPad which I'm allowed to use. Sometimes if it's busy, I will be moved to another waiting area after awhileto drink the barium (?) solution or whatever the chalky stuff is. If I have someone with me, they can sit in that second room with me as well.
The time that you must lie still with no distractions is DURING the scan. I think they have some Muzak in the room with the scanner but to be honest I zone out so thoroughly that I am not sure
ETA - basically they want me to sit quietly right after the tracer but I'm not restricted from all movement0 -
Olma,
Are you talking about a PET or nuclear bone scan?
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PET Scan. I’ll add that to my post
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interesting, olma! I have had more PET scans than I can count or remember and I have never had to drink barium or anything for that matter. I just get the nuclear injection and then have quiet time for an hour without any mental or physical activity, other than normal movements while resting in a bed. I wonder if there are different types of PET scans? Time to continue my education 😊
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Alright all of you great researchers out there, I want to unravel the barium vs no barium mystery during a PET. I am about to leave for an after noon with my oldest granddaughter and didn't come up with anything substantial, but I am rushing so not being very careful.
Here is a link to Dana Farber. This is exactly like the procedure my center follows and there is no barium drink. There is also a link to John’s Hopkins which does describe a barium drink so I am not sure what the reasons for use/non-use of barium indicates. All answers welcome!
https://www.dana-farber.org/health-library/articles/preparing-for-your-petct-scan/
https://www.hopkinsmedicine.org/imaging/exams-and-procedures/pet.html
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yes - my report calls it oral contrast"
Here is an article - from the title, it seems that it isn't a mandatory thing, but some facilities might use it
https://pubmed.ncbi.nlm.nih.gov/15937685/
Oral contrast medium in PET/CT: should you or shouldn't you?
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also you are supposed to avoid strenuous activity for a couple days before the PET and no carbs the day before -
Hope it goes well and that you get fast results because there’s nothing to see!
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Had the PET/CT. It took them 3 pokes to inject the tracer, and I did indeed have to do the barium drink. The valium I took really helped... I've been feeling calm, if a little loopy, for a few hours now.
I'm irritated, though, because the MO's nurse said I would have results today, but the PET people said Monday. Come on, don't make me sweat it out over the weekend, people!
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Hoping for good results sunshinegal. Try and enjoy the weekend.
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