Calling all TNs
Comments
-
Hi there Moderator,
Maybe I don't understand the question. Genetic Testing requires a blood test. That can't be done over Zoom. Right?
If you mean the questions you get asked before the blood draw or after, like the interview info-gathering session, mine was pre-pandemic and OVER THE PHONE. Mine was for BRACA. I think they asked me to come in and I said no I was way too busy. So it was the phone.
Is that what you meant? It was fine. The phone interview for BRACA. They basically just ask if your family has cancer and I guess they make a family tree. No reason it couldn't be a phone or zoom.
I was negative! First good news I got! I DID NOT wait to do surgery for results. Although it was suggested. That's BOGUS. Get your surgery as soon as possible. They can always do more later but you can never take back the weeks wasted for genetic testing to come back while the disease possibly spreads. In my humble opinion of course! Very humble I am! And very opinionated!
Thank you for moderating.
-Frack
0 -
Hi TN friends. I'm hoping for some rational advice from people who know how this goes.
For most of the summer I've been experiencing some digestive issues. In late June and into July I had a lot of stomach/belly discomfort. I finally decided it was probably due to eating lots of fresh cherries. I'm sensitive to almonds, which are related to cherries, so I thought that made sense. Then I went on vacation and surprisingly, felt better on average. However, on the way home (July 20) I had an evening of "gut wrench," with diarrhea. At one point I thought I would throw up, too, but didn't. Next day was better.
Since then I've felt mostly okay until the last week or so. Now I feel incredibly bloated and heavy. I've been skipping breakfast, not particularly hungry, and still I feel like my belly is big and bloated. My stool is different with a BM. You know how you don't always think much of something when it starts, so you don't note what day it is? That's what I did with this. I finally noted that the stool was different on Wednesday this week (Aug 11.)
I figure to wait until next Friday (Aug 20) to give this a chance to get better, or not, as the case may be, before contacting the doctor.
Does that sound like a good plan? Any other thoughts on this? Sorry in advance, I know no one really wants to spend time thinking about someone else's digestive problems.
0 -
MountainMia, I think unless you're in extreme pain (affecting daily activities), have diarrhea which might be causing dehydration, then it's reasonable to wait for two weeks and then contact the dr.
I hope it turns out to be nothing!
0 -
agree- my doc says for mild symptoms give it 2 weeks & if symptom doesn't resolve call
0 -
Have you tried probiotics, MountainMia? My digestive system was kind of a mess after chemo. Remember, chemo kills a lot of things, including good gut bacteria.
It wasn't terrible at first, but got gradually worse as time went on. I started taking Florastor probiotics on the advice of my gastroenterologist and it really helped. That and a really good active culture yogurt.
Funny thing is, I just signed up for a remote Scripps seminar on harnessing the power of microbiota to boost immunity against infection and cancer.
Hope whatever is ailing you turns out to be minor and easily remedied.
Trish
0 -
MountainMia,
My thought is either lactose intolerance or irritable bowl syndrome?
Years ago, I had a lot of bloating and discomfort, my gyn suggested 3 days without milk/dairy products and see how I felt. That showed me that it was a lactose issue, so now I use lactose free milk or take lactiad pills with regular dairy foods.
More recently, my gastro dr said I may have some IBS too, and she suggested IBGuard. It;s over the counter, and mostly peppermint oil. It;s worth a try.
Unless an urgent situation, as others have suggested, I give things 2 weeks to improve before calling drs.
I hope you feel better soon!
0 -
Thanks, all. I don't feel like it's "urgent" and it will be easy to wait that long, as long as nothing gets worse. Mostly I asked here because I am a bit worried, and saying it "out loud" makes it easier to deal with.
0 -
-
Thanks, LMV. That's interesting about the statins. Of course I want to know more, like whether they controlled for blood cholesterol in the subjects. And is it the impact on cholesterol that is important, or is the statin doing something else.
0 -
I actually saw my PCP today about my digestion issues, as it had become too uncomfortable to wait. She had blood tests and urinalysis done -- all numbers fine, including liver function! -- and after we talked for a while, she sent me down for abdominal xray.
When I came back upstairs, she already had the images. OH! she said, I know what's wrong. Your colon is full.
She showed me the image. I don't seem to have a blockage or impaction, but my gut is full up. So step one is get empty again (yay, golightly...) and then take another look with US to see if there is anything else structural to be seen, and also check my thyroid numbers to see if my whole system has slowed down.
So that was GOOD NEWS #1 (or #2, in a way!!)
The other good news (?) is that I'm considered immune compromised, so I'll get my covid booster shot next week, too!
0 -
Hi Mountain Mia, good news on your digestive issues :-)! I have noticed that my digestion (which is generally more on the sluggish side) is much better the less meat and fish I eat and if I cut out dairy pretty much completely.
0 -
Hi all. This thread was recommended after I posted in another. 10yrs post diagnosis of my original diagnosis i was diagnosis with triple negative. Completely separate from my original diagnosis, has zero connection. Im floored. I expected a recurrence but not a new diagnosis and not tnc. Tumor is only 6mm so oncologist is extremely hopeful. I found both cancers with self exams. Very lucky to live in Massachusetts and have Dana Farber.
0 -
Hi Kayce,
I just saw your post...yes indeed Dana Farber is top notch, and I believe has led some of the research and discovery for TNBC options! I'm sorry to hear you have a bc diagnosis. I will send you something privately - check your messages. I'm not on here often, but this group of ladies will surely support you. Thinking of you and sending love and healing prayers your way!
Debra
0 -
Doing my once a year pop in to make sure you remember MANY of us have survived and just don’t get on the boards any more. I used to look for that so often and it upset me not to see long term survivors. I promised myself I will check in yearly to encourage others. I was 43 when diagnosed and today I turned 55!
I had one local recurrence at 3.5 years out and in October, I will be 8 years out from the second time.
My thoughts and prayers are with all of you who have become stronger than you ever imagined you’d have to be. The first years of survivorship are anxious times. Please be kind to yourself as there really isn’t a one size fits all recovery.
I’m grateful to this forum for the information and support it provided during the hardest moments in my life.
I hope to pop in again next year and continue my streak-every day is still precious to me. Love and light to all
0 -
5andcounting, thank you, and I hope for you to have a lifetime of good health!
Your message is very helpful, especially the fact that you had a recurrence and are doing so great. I'm probably not the only one of us who expects that any recurrence of tnbc is metastatic. Of course that's not true! but without examples to see, it's hard to believe the truth.
I have a new lump, a small hard spot under my lumpectomy scar, which I found earlier this week. Now, I have LOTS of lumpiness under my scar, so that in itself isn't surprising. But this one I don't remember feeling before. It's a distinct thing, small like a peppercorn, close to the surface, practically in the scar.
Yesterday I saw the PCP for follow-up on my digestion issues. When she raised my shirt to poke my belly, I said, hey, while you're poking around, feel this thing. She felt it right away, exclaimed a little, said it almost feels like a surgical stitch. But surgery was 2.5 years ago, and I don't remember noticing it before, and I don't remember anyone else remarking about it during any other breast exam. Note I keep commenting about remembering. It honestly could be something that's been there and noted and not important, and I just don't remember. ??
So PCP will contact the BS (same hospital system, they know each other) and decide what next.
I expect it's some type of scar tissue or fat blob, alive or dead. But I'll be glad to find out more.
0 -
Surgical stitches do move, MountainMia. They can also spit out years later. I had that happen on the abdominal scar from my DIEP flap surgery. It was very weird.
Meant to post on August 29th, which was the five year anniversary of my diagnosis. Hard to believe it's been that long.
I'm still here, battered and forever changed, but still NED, as far as we know. Hope to stay that way for a very long time.
Trish
0 -
5andcounting, thanks for checking in and letting us know how you’re doing. Happy Birthday 🎉🎂!
Trishyla, CONGRATS on 5 years! Love hearing good news like this. I hope to make it to 5.
0 -
Trishyla, big congratulations on the 5 year anniversary!! That's beyond exciting, I expect!
0 -
5andcounting, thank you for posting! Happy birthday!! Keep celebrating and enjoying!!
MountainMia, - Lumps and bumps seem to turn up often, - most likely nothing! I was sent for sonograms twice in recent months, so I know the feeling! (Isn't it funny that in these cases we wish for fat?
Hoping yours is just that!)Trishyla, - Great to read that your post!
Hugs to all here, and wishes for GOOD HEALTH!
0 -
MountainMia, I’m sure your little peppercorn is fat necrosis. I have the same thing under my port scar.
0 -
I also had a fat necrosis and had it bx. Didn't know it was that. Was scared cancer had returned. Thank god it was dead fat
0 -
5AndCounting thanks for checking in, it's nice to see thrivers who take the time to let us know things are good. It's so wonderful you passed the 5 year mark. I agree those 5 years must have been hard.
I am now where you first were, awaiting my lumpectomy surgery next week, surgeon suggested over mx. Sometimes I have 2nd thoughts about getting the lumpectomy because I can't imagine after radiation getting a recurrence & having to go through chemo all over again. I was told the chance of that was only 6%, so I am always baffled when I read recurrence cases. Medical research is progressing and now there is this new TNBC prevention drug, Keytruda I think. MO mentioned she would prescribe it if pathology shows no ER+. I am also scared to go through any surgery because my body has been somewhat weakened by the chemo.
That said, may I ask how long it took for your hair to grow back? My last taxol was 8/20 and am still bald. I would think it takes 2 weeks for the last Taxol to hang out, one week for it to leave body, then a few weeks for hair cells to realize the drug is no longer affecting them. Rest of body hair (lashes, brows, etc.) is still gone too.
It is so nice to see all of you ladies here and congratulations on your good health.
0 -
5andCounting - congrats and thank you for checking in.
Hope - Everyone is different. For some it grows faster and some slower. My last taxol was 8/18/20 and I already had a tiny bit of fuzz on my head, a month later my whole head was covered. The small amount of eyes lashes and eye brows actually fell out 2 weeks after my last treatment. When it grows back it'll probably come back full force! Praying it happens soon for you!
0 -
Thanks, Serendipity. So glad your hair grew back early. It's interesting my grays never fell out.
0 -
Hi all. I'm just here to note my (not overwhelming) anxiety out loud. It's a whole 2 weeks ago that I found this lump in my lumpectomy scar by accident. Very likely it's fat necrosis. I know that's the likeliest thing. When I found it, it was about 5mm, the size of a peppercorn. That's what my PCP said 4 days later. It was easy to find, but you did actually need to press into my breast to find it.
It seems to have grown a fair amount in 2 weeks. Now it's easy to feel by merely brushing past it, no need to dig for it.
I have an appt with BS next week. And likely she'll set me up for imaging.
And I know that most likely it's fat necrosis. But if it isn't, or otherwise isn't benign, it's a bad thing. The definition of "malignant" is bad thing!
Anyway, as I said, I'm just here to share my anxiety. It would help if you just say, "I'm with you! This sucks! We'll all be hoping for the best!"
Thanks.
0 -
MountainMia - Vent away!
I have something similar on my scar where my port was. Of course as of late, I freak out with every little bump/lump, hell, mosquito bite I find on any area of my body. The anxiety of not knowing that it's not a "bad thing" and the waiting is all so overwhelming; I'd rather know now then have to wait.
Praying it's nothing, which I'm sure it is!
0 -
Mountainmia,
I’m crossing my fingers and toes for you that it’s just fat necrosis. Hugs
0 -
I'm sorry you are going through this anxiety... and you are smart to share it. Hugs.
0 -
Serendipity, NorCalS, santabarbarian, thanks for your kind words and encouragement!
Mia
0 -
I'll add my well wishes, MountainMia. I hope your results are completely benign.
I'm just sitting here chuckling, though, as it occurred to me what weird things those of us who have had breast cancer wish for, since I was about to hope that what you found was either a big ol' lump of fat or an ugly chunk of missed sutures. Normal people don't wish for these things, do they?
Good luck.
Trish
0
