Calling all TNs
Comments
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Joyce...praying for you...it's hard not to go "there". I've already been there this week myself. Let us know the outcome.
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Yah Joyce!
Glad to hear it went so well. Hopefully your report will come back quickly, but being that it is already Wed, you may not hear until next week. Try not to let that bother you (Ha, yeah right!), because that is fairly routine.
Like jenjenl said, "don't go there". MRIs can show alot of things, and headaches can be caused by even more. The radiologists (probably specialised neuroradiologists) will look at everything, even your sinuses and optic nerves. You'll be amazed at what all goes on up there!
And Joyce...please be kind to yourself. You just finished radiology in Dec. You are not even a year out from dx, yet. It takes time, girl. From your comments, it sounds like you are trying to find your "new normal", especially with "forced retirement". Oh yeah - I know all about that. I went through that 10 years ago. It is hard to accept, because the choice was taken away from you...but it does get better with time. It sounds like you are getting back into life with your plans. Go for it and have fun with "the girls". They will be your best medicine
Hoping for quick results~ Shar
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Anne - I had my shot from hell cut back to 3mg and my steroids reduced. It helped me greatly.
DorMac - good one!
Shar - thank you for mentioning the mirror! The first MRI I had - had a mirror, but I have never encountered one again. I was beginning to think it was all in my head! I have a friend going through anxiety in the scanners, can't wait to pass on your advice.
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Today my WBC and Neu were so low that they told me not to eat raw vegetables. But they said nothing about waffles and bacon, so I went to the IHOP!0 -
obxk..Ihop your so funny....did you love the waffles and bacon
I have been having issues with my neck on the cancer side. Pain when I tilt it back and turn a certain way so last week when It felt like something was pressing on my esophogas I decided it was time to go have it checked. My mo saw me and did not feel any lumps but sent me for a ct and us right away. I got the results today and I am happy to report that I have been diagnosed with hypochondria. I could not be happier about this dx as the other options just did not sit well with me as you can imagine
Maggie
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Mags....that is great news! Relief!
OBXK...I have been craving waffles. Sounds like Sunday breakfast to me! Yum!0 -
Maggie - maybe a new pillow?
Hope - The waffle was divine! They also had really good coffee. I may have to look for my waffle maker, in the seldom used kitchen appliance cupboard. I like mine with fresh, NC pecans in the batter.0 -
Anne,
I rinse whether my mouth it bothers me or not, I brush twice a day and rinse about 3-4 times a day, and I irrigate my sinuses once a day and am really doing well in mouth and nose. I am on a Thursday schedule next on 2/21 but we are close. As for the weight gain. I was a totally non-compliant diabetic before cancer and have been really trying to watch my diet and control my sugar (which is doing great) so I haven't gained any weight except for the water weight from the taxotere. My hands and legs are swollen and it usually goes away right before the next chemo.
I too don't like the way the neulasta shot makes me feel but it is keeping my WBC count in the safe range so I will tolerate it two more times. As for feeling bad after chemo, I am ok the day of then start to feel crappy on Friday and usually feel totally out of it until about Tuesday then just general blah for about another week. I really admire the women who can work I just can't. As a nurse my job is to demanding and physical and I don't have what it takes right now. I have numerous medical issues and seem to always be going to Gainesville to a doctor or lab or something and each trip is at least 70 miles round trip which due to traffice takes about an hour or slightly less each way.
I am starting to feel good so I usually have about a week before the next chemo when all I have to deal wit is fatigue and I just take it easy.
One other thing I use vaseline on my hands and feet and they are doing well too. I am gonna switch to Aquafor on the recommendation of a sister of mine who says it has other stuff in it that will help hold the moisture in.
Hang in there Anne we will make it, Sheryl
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Joyce, find an open MRI even if you have to drive a bit. It will make it all worth it. If not take an Ativan at least 1 1/2 hours before scan to be at peak.
Good luck, Sheryl
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Waffles and bacon does sound good!
Happy to hear all is well Mags!
My friend told me that it has been shown that root canals can cause cancer, and then looked at me dead pan and asked, have you had alot of root canals? It was so hard for me not to bust out laughing! I just answered that I have not had any root canals but I do have the BRCA 1 gene.
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Mags, awesome news!
Regarding weight, it is VERY common for women to gain some weight while undergoing treatment. My advice? Don't beat yourself up about it. My doc said, Eat what you fancy, and try to fancy healthier choices. And get out for a 30-minute walk whenever you feel up to it.
Mouth issues, yes, don't wait until you have a problem. I rinsed with baking soda and water 4 times a day for 4-5 days after each chemo, thankfully any mouth irritations were very minor.
Hugs to all those managing their way through chemo. It gets so much better!
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DorMac - that was hilarious!
Hopex3 - I would be very interested to hear what your nurse says re survivorship diet. You might keep us informed.
x
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Shar - thanks for your kind words. I think I have found my solution for MRI anxiety--avoiding looking at the machine, blindfolding my eyes, and anxiety meds. :-) And my own music.
Maggie- good news. feeling your relief.
Sheryl - I asked about the open MRI. My MO didnt think the results are as reliable as the closed machines. so, went with her opinion.
I am finding it much harder to deal with the 'after treatment is over' aspects, than going thru treatment. I think I was running on adrenaline, since everything was 'pre-programmed' for me, I just did what I was told, and thinking we were beating the big C. Then, when my MO said they wanted to leave my port-a-cath in for at least a year..your mind goes to those unwanted places. I am ordering the Dancing in LImbo book, hoping it will give me some insights to living with the 'after chemo' life.
Still waiting for results from MRI--I guess that's somewhat good news. MO said if there were serious concerns they would call her right after they read it (yesterday). Hoping to hear today, so I can have a peaceful weekend with Mom, and my 2 sisters.
Thanks, again, for all the support. It is so hard to try & express feelings to my dearest husband..who just says' don't talk about that'. I know he worries too, but why do men, in general, hate to voice their feelings. Sorry, for the ranting. Just feeling a need to vent today. Tho I dont post often, I read the posts often, and gain comfort and strength, knowing that what I am feeling it not so unusual. Moral support is sometimes half the battle to calming our fears, and getting us over the hurdles. Thanks.
~Joyce
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Ladies,
Question - am I being completely naive when I say that my line of thinking is that if this ugly beast doesn't come back to haunt me in the next few years that I have a good chance of living a long and healthy life? Sorry for the deep-ness of this, i'm finished chemo and waiting to start rads on the 25th so I guess I feel vulnerable and emotional, but that has been my way of thinking from the get go. I'm only 33 and I have no notion (with the Lord's guidance) of going anywhere anytime soon. Like Meggy said in another post, I have a small baby, and I will do anything to be around to see her grow up and with the help of God I might have another baby to add to my beautiful family in a few years time. I read that younger women have a worse outcome with TNBC but I will not let BC take me, my life will end when God decides it. I see that a lot of you are 2+ years out from this disease, are there any of us that are 10+ years out?
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Mumtobe - I am closer to your diagnsis (much older, tho :-), but am going with what my MO told me. After a year, our chance of recurrence goes down significantly. and, if we get to 2 years with no recurrence, in her words, she feels like we TNBC girls are highly unlikely to have a recurrence. I'd be curious to hear what others have been told. I know there are some long-term TNBC survivors out there.
On another note***GOOD NEWS***no sign of brain mets on my MRI. Some slight venous abnormality seen, but MO says it could be a lifelong thing, and just the way my brain developed. She wasnt concernced, but radiologist wants to F/U in 6 months to ensure it isn't changing. I can deal with that. Now, off to pack my suitcase for a fun 3 day weekend with my 2 sisters, and Momma in Branson, MO. Braving the cold to shop may be too much for Mom, but we can have just as much fun staying in, visiting, and playing games. We seldom get time alone together, when one of us doesnt have to cook. :-)
Blessings to all of you!
~Joyce
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Mumtobe,
There are many Women 15-20 year's out. I was DX: in June 2012. My MD also told me there are many Women who live very long lives being Triple negative. I know it is easier said than done but try not to worry about it. Also, ask you MD about sucess rates. A lot has changed in recent year's. God Bless... Marianne
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Hi All,
I start my chemo on Monday and was going over my notes from my MO visit and I had a scare. My MO mentioned that my stage was IB. I didn't think too much at the time because I was in the consult talking about my chemo and other things. Then today I was going over the information again post RO visit and I decided to wander over to the staging link again to refresh my memory on the A, B, C in staging. Well BC.org states that Stage IB:
- there is no tumor in the breast; instead, small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – are found in the lymph nodes OR
- there is a tumor in the breast that is no larger than 2 centimeters, and there are small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – in the lymph nodes
My final path reports stated that my nodes were all clear. So this didn't make sense to me. I should be IA.
Stage IA describes invasive breast cancer in which:
- the tumor measures up to 2 centimeters AND
- the cancer has not spread outside the breast; no lymph nodes are involved
I had a small panic attack thinking there was something they found different in tumor board that I didn't know about. I called BS's assistant and asked her to clarify that for me because I was having a small freak out. She just called me back and said he must have meant to say T1B for the size. She said she went over all of my reports again and the tumor board report and everything there states T1B, N0, M0 which puts me in Stage IA. She said she will have the MO confirm it with me on Monday at my chemo appointment.
Whew! I know it may not sound like a big deal but it is a big deal! IA vs IB means cancer not in the nodes vs cancer in the nodes.
Deep breath and reboot.0 -
Joyce - wonderful news!!! I hope you have a lovely visit with your family.
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Awesome news Joyce!
My dh and I are celebrating 30 years of marriage this weekend...I bought him a new wedding ring...going to put Train on the laptop at our hotel and ask him to marry me...hope he says yes...lol....guess we will probably mess around a little too...ha ha...that goes with it!
I do like it that our chances of reocurrence goes down after a couple of years....but man getting through those first few years is freaky....just be vigilant ladies...I know I am..
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Mumtobe,
With triple negative the evidence says that if no recurrence in the 3-5 year period that our chances of recurrence actually becomes lower than women with other types of BC. Would need to reread some research to see if it is actually 3 or 5 years. Also because TN is such an aggressive cancer it responds very well to chemo and I see you are getting all the big guns. I couldn't get the Adriamycin because of health risk/contraindications such as diabetes for years, a previous heart attack and mom and brother both had open heart surgery. So you are getting one more chemo than me. Enjoy every minute of your life with your family and precious child. None of us are promised anything but today.
Hugs, Sheryl
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Titan - have a wonderful weekend.
It sounds very romantic.0 -
mumtobe-My first diagnoses was in 2002, stage 2b-3.5 cm tumor and 2 positive nodes, no recurrence. I had a new tumor show up in the opposite breast in 2011 (that's a different story) so no recurrence for many years. My thoughts are it stayed away for 9 years, it can stay away again for another 9! Hopefully more as, now I have had a bmx, I know that doesn't change recurrence, but no more new primary!
I had an accident today. One of my goats knocked me over! Fell backwards first landing on my hip and then bumping my head on the ground. Contemplated going to the emergency room, but decided not to. No dizziness, but I do have a headache and my neck and back/hip hurts.
Any news from Dawn? I miss her.
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According to the book "100 Questions and Answers About Triple Breast Cancer " recurrance is most likely to happen in the first 2-3 years and rarely recurs after 5 years. I found this book on the TNBC Foundation site, but I think the link took me to Amazon to purchase.
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I really would like to know if anyone here was on the pill before dx, thank you. Renae
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Titan - enjoy your weekend!
Bak - good to hear from you but sorry about the goat accident. I haven't seen anything from Dawn in a long time. I don't know if anyone has contact outside of BCO?
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Titan gee I would love to be a fly on your hotel wall with a camera. You could wear something sheer/flimsy/see through. You could do it in the buff but men like to take something off!. Now when you get down on your knee for the proposal don't cough, stutter, fart or fall over (can just see you with your arse in the air and the ring round your big toe, lol) cause that's when I would take the photo haha. Congratulations to you and your old fellar girl. 30 years nowadays takes some doing. Have a great time and........... I hope he says yes. PS don't get pregnant.
Bak sorry to her about your accident. Hope you are ok and not too bruised. Your post gave me great hope. That is a long time without recurrence before a new primary. Makes me think I could make it too.
Can't help with the pill ladies. Took it many years ago because they said it could help me to become pregnant but I only took it for one month and then it caused a blood clot in my lung. I have never really liked the pill though because I wasn't keen on it stopping something that to me was natural (period). Never really liked my girls taking it either, though it was their choice. To me when you have completed your family it is up to the man to do something (if he's brave enough !!).
It's a beautiful day here today and I feel like doing something really radical. Perhaps I will propose to my old fellar too lol.
Have a great day ladies. Thinking of you all. Annie
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Thank you so much for your encouraging words ladies, some days are easier to get through than others, as you so well know. I don't know where I'd be without you all xxx
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bak - I feel for you, girl.
I have been hobbling and hurting since I took a tumble down the stairs last week, when my wonky MS-foot tripped me up. (No goats involved).
Silver lining ...stopped thinking about BC!!!
~ Shar (aka Grandma Wobbles)
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Hi - I get so confused on where I've posted, and the only way to know is to search for my own name. Is that how you all know how to get back to your conversations?
Okay - so to update all of you, because I have a very active mind, I am getting this 'most likely' scar tissue removed from base of right breast. MRI in January notes nothing to suggest malignancy, but because they still didn't say what it was, I'm going in! PS thinks the sling for the implants has folded over.
I saw my PS yesterday who agreed on the surgery, and at the same time he will put in new implants for me. We think one of them has rotated back to front - backwards. At the same time he will remove this area of concern for me, and sculpt me a little more on the inside to make sure additional scar tissue is gone. I don't see any, but can feel a spot or two when I do my bse.
I will reload the pages and see what I have missed!
Regarding the pill, I was on it for a long time, OrthoNovum, but have been off of it for 10 years now. I don't have kids though, no family history of bc. However, my tumor was completely surrounded by a rim of fat. So maybe it was my diet that was a contributor.
Nowadays, its's low fat and lots of exercise for me. Although I don't think I've stayed at 20 fat grams a day, but I know I'm like a 95% better at eating healthy than I used to be.
- scar tissue post-mastectomy
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