Calling all TNs

Mamiya

I am in the US and had lunch with my friend who is a 10 year TN survivor yesterday and I asked her this very question about scans. She doesn't get scans as her doctors feel that scans expose her to more damaging effects like X-rays and dyes etc that aren't good. She does get blood work every 6 months.

jenjenl

Ally, no one in my family will get tested either. They had a front row seat so know. Ive stopped asking and encouraging. They're life their decisions.

Peabrain

Thanks everyone for the encouragement and info on the neuropathy!

Mine is sort of midrange in the grand scheme of everyone's experiences, it has gotten up to my ankles and my wrists, mostly just numb. My fingertips bug me the worst, like someone hit each one with a hammer and then left the pressure on. And the Taxol has loosened all my nails in the beds, so it's a delightful combo effect. It takes five minutes per button and holding a pen is tricky, my handwriting's gone to hell. I think the numbness in my feet makes me unsteady, but it is also the anemia.

I am hopeful it will all fade into an unpleasant blur after chemo.

anotherNYCGirl

Hi All,

I am, again, very far behind on responding, although I have been keeping up on reading.

Figured I'd chime in and join the 'no scan' people. My drs have not yet mentioned having any.

As for neuropathy, - mine is just about gone, but while I was in treatment the onc suggested eating foods high in magnesium to help. I developed a liking for mangoes, and perhaps that helped!

Now if I could just get my hair to grow in like real hair instead of thin wisps!

Meadow, - your grandchild is a real cutie!!

Although I havent written lately, I think of everyone here often and send BE WELL wishes!

I am running off now to PT, which I recently started because of lack of range of motion and discomfort from lat flap procedure. It's getting better!

Hugs to all here!

Shopgal2

I haven't posted here much but have been reading along. I was wondering if anyone who did DD taxol stopped early and didn't do their last dose. I go for my final chemo next wed and have had increasing neuropathy since the first dose. After the 2nd dose I had decreased urination which I read can be a symptom of bladder neuropathy. Anyone have this? I told my mo last week at my 3rd dose and he decreased the taxol to 60%. I am scared to not get the last dose and have a reoccurrence and am scared about the issues I have with neuropathy becoming permanent. Anyone had a similar experience?

SA8PG

Hi Shopgal

I did not have my last dose of dose dense Taxol. I had a scan afterwards and it still showed residual tumor .8 mm but then after I got my pathology report back from bmx it was just scar tissue. I had a complete pathological response. Hang in there. Stay positive. :-). My neuropathy is almost all gone. My left hand is the worst. But it has gotten better.

Hugs

G

Shopgal2

thanks. I was spinning today and worrying myself into the carpet. I am feeling better. Some days I get freaked about this disease.

Allydp

Add me to the no scans post treatment group. The way my BS and onc explained it to me is that survival times are the same for those who find mets early as opposed to those who find it after symptoms present. I hated the idea at first, but now find it less stressful.

LillieRose

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 💛

Shopgal2

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?

SA8PG

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

littleblueflowers

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.

ALHusband

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.

shorfi

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.

MoreShoes

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.

Trisha-Anne

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

LillieRose

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.

Peabrain

@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...

Mamiya

I made it to 11/12 taxol

Meadow

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

cassylou

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

Shopgal2

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.

SA8PG

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

Mamiya

I will be thinking of you and wishing you the very best G!

slv58

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

JulieAggie03

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.

MoreShoes

Lots and lots of luck SA8PG!

Luvmydobies

SA8PG, I'm praying that all goes well and will be thinking of you! (((((HUGS))))

6feetover

SA8PG: Good luck tomorrow! You'll be in my thoughts!

greenae

Good Luck, Sa8! Positive Energy and a Speedy, Uneventful Recovery