Calling all TNs
Comments
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Hey al,
Casey- I'm in the same boat! I never even had scans before chemo... Just ultrasounds and mammos... After surgery I had clear nodes so all the docs said nothing unless symtoms! I won't even have bloodwork and after I see them next week for my 3 month they said every 6 months! I'm in Boston at a pretty big hospital and apparently this is the norm! It's scary but it does seem like it's what all docs do...
Shopgal- I only had 8 weekly Taxols and had a PCR at surgery! I was so scared not getting all the Taxol but it actually seems common!
I'm having a hard day today guys... I'm just playing with my baby and all of a sudden the news pops up and a local woman losther fight to TNBC... Of course I watch the story and then I see the woman and realize I know her... Knew her.... I'm in a support group at Dana-Farber and she was there... I didn't go to meetings during treatment because it was to hard for me but I started going back after it finished. I thought maybe she had just decided not to come anymore but now I know it spread to her brain and she passed...I'm having a really hard time with this. I didn't know her well but she was a young mom like me.. Found her lump 6 months postpardom (I found mine 4)... We had such a similar story and now she's dead... I'm freaking out... This is so awful and scary. Sorry for rambling I just needed to vent... Thank you 💛
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thanks lillierose.
my mo didn't mention any scans after treatment. I will see him next wed but what type scans should I be asking about?
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LillieRose
I'm so so sorry about the loss of this precious wife and young mother.
After I read your post my heart got so heavy. As you know this hits home to a lot of us.Cancer doesn't play fair. My sincere prayers go out to her family and to you. Much love, prayers & hugs
G
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lillierose, I'm so sorry to hear of the loss of your friend.
No scans here either. Had an mri and ct after surgery to make sure it hadn't spread. I get blood work every 3 months.
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Follow up recommendations. From an ASCO publication dated November 5, 2012.
Recommendations
Regular history, physical examination, and mammography are recommended for breast cancer
follow-up. Physical examinations should be performed every 3 to 6 months for the first 3 years,
every 6 to 12 months for years 4 and 5, and annually thereafter. For women who have undergone
breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the
initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless
otherwise indicated, a yearly mammographic evaluation should be performed. The use of
complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic
ultrasounds, computed tomography scans, [18F]fluorodeoxyglucose–positron emission tomography
scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA
15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic
patient with no specific findings on clinical examination.
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I now see my oncologist every 6 months and do blood work. She does not recommend scans at all, unless a patient presents with symptoms. She doesn't believe in them and she tells me there is too much exposure to radiation. She said having one scan is equivalent to 500 chest x-rays...and it's not worth the risk.
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What a great source of information this place is!
Fighter -thank you for posting this. I'm also on Gemzar/Carbo and I've been discussing about a trial. They proposed a stem cell trial but I had also heard about the immune-therapy trial. I'll check with my MO. It's good to know what to ask.
Cassylou, I'm still in the middle of all the treatments, so I don't know what they think they'll do for monitoring. I'm in Europe.
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I've now had my surgery, and saw the onc yesterday.
I'll be starting AC on 17th of this month, but can only do three cycles as I've already done three cycles of FEC with my first bc, and apparently you can only have a lifetime dose of anthracylines of six.
I had terrible problems on Taxotere last time and couldn't complete, so this time we are doing 12 weekly cycles of Taxol. This is the one I'm really frightened of given my previous experience with taxanes.
Trish
xoxo
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thank you guys. It's just hard to see the reality we face... It's so scary! And cancer is so unfair. It really does make you appreciate everyday... Every moment.
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@lillierose - So sorry to hear about your friend/group member! It's especially hard to identify so much with someone, scarier.
It's official today from my MO, no more chemo. I finished 4 DD AC treatments and 10 of 12 weekly Taxol/Carbo treatments.
I wonder what the percentage isfor how many of us don't finish the initial treatment goal...
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I made it to 11/12 taxol
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Peabrain, so sorry about the loss of your friend, such a loss. Please do not let her death send you into a dark place. We are all individuals., our health is determined by so many factors. Joping you are feeling better emotionally soon.
I have 3 month appointments, yearly scans.
Al, Thanks for the info
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Thank you everyone for your replies regarding scanning and monitoring after treatment. You have no idea how relieved I feel after hearing back from you all.
I last saw my oncologist on my second to last chemo in October. Ihave since had surgery and my pathology report back, which was quite positive, so I was looking forward to seeing her. To start with, she was quite reserved and not nearly as positive as I'd hoped. She mentioned that if it came back, it wouldn't matter if they found it sooner or later, the outcome would be the same. That was quite a reality check. I was also expecting to get regular scans so I could tick the 'still cancer free' box every so often. I guess after months and months of treatments, tests and and appointments, I now feel a bit lost. More so then when I was caught up in it all. Anyway, I'm sure this will change with time. I feel relieved to know that my follow up care seems to be fairly standard and it's not just my oncologist dropping me like a hot potato now that treatment is over! Thank you guys, you've all been more help than you can imagine. X
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Peabrain congrats on being done chemo & early too. I am supposed to get my last DD taxol wed and am pretty sure my mo not have me do the last treatment due to neuropathy. Do feel better reading that quite a few people to not do all of the planned infusions.
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Hi everyone
Well after a LONG year of infections & multiple surgeries my DIEP reconstruction is finally happening. I would really appreciate all your prayers & well wishes. That all the tissue would survive, no infections of any kind & that by Christmas all my drains will be out to enjoy time with the hubby and children.
Thank you all. I'll touch base when I am able.
G
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I will be thinking of you and wishing you the very best G!
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SA8PG, sending positive thoughts for a great surgery and recovery! The first week is the hardest but will be well worth it! Everyday gets easier. Gentle hugs xxx
Shari
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SA8PG-thinking of you! Prayers for a smooth surgery and speedy recovery!
I am heading to my last Taxol on Friday! WooHoo for being done! Met my PS last week and looking at BMX with TEs in the middle of January once he and BS can get a date nailed down.
An update on my sister and her recent dx---turns out she is also TN IDC. We are using the same BS and PS, she is going for BMX with TEs on 12/22. It is right before Christmas but she wants to get it in on this years insurance and our BS said since her tumor was less than 2cm she had the option of chemo or surgery first. Hopefully, she will be out of the hospital by Christmas and we can celebrate a little! Still shocked but so happy we caught this early for both of us, we'll beat this bitch together! I will try to get her to join us here on this thread too.
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Lots and lots of luck SA8PG!
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SA8PG, I'm praying that all goes well and will be thinking of you! (((((HUGS))))
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SA8PG: Good luck tomorrow! You'll be in my thoughts!
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Good Luck, Sa8! Positive Energy and a Speedy, Uneventful Recovery
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And Julie and Sis, you two will Kick some Butt Together! Hugs
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best of luck SA8PG. I had my DIEP 4 weeks ago this Friday. The first week was the hardest but overall, it hasn't been as tough as I'd imagined. Just take all the help you can get, even if you feel you don't need it. I'm healing really well and I'm sure the reason why is because I was able to take it easy the first few weeks. If you have any questions, just shout X
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SA8 I wish I could be with you tomorrow waiting with you, but I will be waiting here instead to hear how you are. Prayers for tomorrow
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Thank you everyone so much. I woke up with peace in my heart & a smile on my face. Believing I will be fine & restored. Sending you all my love, prayers & warm thoughts. I honestly am so thankful to be here still to do more celebrations & enjoy the daily joy of my chaos.
Love you all.
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Lots of prayers to you SA8 for a speedy and well recovery!
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SA8PG, good luck and i agree with others the 1st week is the worst. We are here for you. xo
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good luck SA8!! Sending you healing vibes and soft hugs
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hi tn gals. I had my last chemo today; I actiually finished all of my DD taxol after debating whether to complete it. My MO decided to do 50% of the dose. He was supportive of either decision I would have made to either stop early or finish. I felt I needed to finish as close to complete to give myself piece of mind regarding reoccurrence.
But quick question anyone wait to do rads? I got a letter from my employer that my Fmla exhausted and my job can be filled. I still am employed as long I am on long term loa but if I return at my scheduled time in Jan before rads they may either hold my job or give me lower position which would be considered a demotion. I have worked for them for 18 years so I'm sure they will find a spot for me. I am debating whether to return on time to get my old job back and work a bit before I start rads. Can anyone advise or had a similar experience? Mo & ro said I may be ok until last 2 weeks of rads. I would have to work a full 9 hr day plus travel time to work & rads before work. Plus working from home is not an option with my company. Thanks.
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