Calling all TNs

Mamiya

That is so interesting. My MO told me (I asked if I should get the flu shot) that it wouldn't hurt anything but that it would not work (during active chemo treatments) because of the chemo's effect on the immune system...

StefLove

Lou, the surgery after chemo showed no cancer. The surgeon told me that they could tell cancer was present at some point but it was dead. I honestly forgot to ask him if he was talking about the tissue from the lumpectomy or from the additional lymph nodes they removed.

ALHusband

Ladies I remember having a discussion with my wife's Onc regarding follow up scans. I'm sure cost has to do with it...but he explained that the bad outweighs the good with scans unless there are symptoms...mainly because of the amount of radiation. Maybe not getting a lot of scans is a gift! I read somewhere that one PET scan has the radiation of 500 X-Rays! I'm not sure if that's true...but I sure wouldn't want that amount of radiation unless there was a darned good reason for it.

Luvmydobies

I'm home. They were way behind this morning My Onc said he thinks my pain is just an inflammatory issue from post mastectomy pains. He said he's seen similar symptoms in many patients. He said he couldn't even feel my liver which is a good sign! He says I'm doing well and to come see him in six months! I'm exhausted! My head hurts, my stomach is still in knots and I just feel kind of bleh. Too much stress I guess! Lol. I pray every day for a cure for cancer! Thanks so very much for the prayers and support! I couldn't do this without y'all! XOXO!!

Allydp

Ajb - welcome

Luv - I've been checking in today hoping for a good update from you! So glad you're home and your onc isn't concerned! Take it easy today. Sending you hugs! xo

CarolinaAmy

I emailed my MO's nurse about my side effects, and because of the serious increase in neuropathy, they're having me skip tomorrow's Taxol and come in next week to check in. That appointment was supposed to be the checkup before my final chemo, but I'm hearing now that my MO may stop here or possibly after #11 next week if she lets me get it. I'm incredibly anxious about this, because I never saw that coming. I'd been doing really well as far as neuropathy or other side effects, but they seemed to have crashed in all at once. I HATE the idea of cutting treatment short; I didn't even want to reduce the dose before this. I'm hoping I can talk them into at least a reduced dose...

Talk me down. This isn't the end of the world, right?

HausFrauMi

I almost always get the flu shot (except the past 2 years we were in Germany). It won't cover everything but figure if it can keep from getting most of the strains then it is worth it. Plus for many years I worked in healthcare so not really optional.

Tests Update--genetics called back and I am negative for the major 6 ones they for...will continue to test the remainder of the 17 possible mutations and will hear back when they are completed in a few weeks. Test results in exactly 2 weeks for the initial set. (blood was drawn Jan 19 late afternoon) and sent to Ambry Labs which is on the West Coast so not sure how many days it took to arrive.

MRI was yesterday morning....saw my results pop up in my online hospital chart this afternoon--RESULTS copied below--

(findings)

There is no internal mammary or axillary lymphadenopathy bilaterally.

IMPRESSION:

1. 1.6 x 0.9 x 1.4 cm suspiciously enhancing mass in the upper outer right

breast posterior depth at 9:30. This is consistent with the patient's known

breast malignancy.

2. 6 mm enhancing mass in the lower outer left breast at 5:00. Targeted

ultrasound is recommended. If this is not seen then this should be followed

with MRI in 6 months.

3. No other MRI evidence of malignancy.

(end)

SO the tumor is significantly larger than even the surgeon got from the US in her office on Jan 22 (1.0cm was the largest she measured). The November 30 ultrasound 1.3 x 0.6 x 0.8 cm.

granted its been 2 months so I expected growth....

What do I do about the #2 6mm enhancing mass?? Did anyone else have something like that in the opposite breast and it turned out to be nothing??? I'm still trying to decide lumpectomy or BMX and this doesn't bode well.....Tumor review board meeting at 12:30 Wednesday. If I have to get another biopsy and wait for the pathology treatment will be delayed another 7-10 days probably. My right breast tumor is not palpable.

ALHusband

HausFrauMi when they did my wife's MRI's etc they got 3 different sizes. The doc said the only completely accurate tumor measurement is when they do surgery, due to varying angles, equipment, etc in the imaging. Not saying it hasn't grown...but that may not end up to be the case or it may be only slightly bigger.

HausFrauMi

Thanks AL! That's good to know with these numbers all over the place!!!

Allydp

Amy - there's been a few ladies here who have stopped chemo early. I hope they chime in, as I'm sure they'll reassure you it's not the end of the world. There's also been others here who discussed stopping early due to neuropathy, but pushed through. I would definitely have a nice long talk with your onc and weigh out all the options. Like you said, maybe you can compromise and reduce your dose, or maybe the week off might help and she'll decide you can finish it out. I'm sorry this type of big treatment decision was sprung on you though. Hang in there!

Haus - I had 2 small, non-palpable masses show up on my MRI at diagnosis in my opposite breast. They did core needle biopsies and both were calcifications. Unfortunately, this did delay starting chemo by two weeks, but that same MRI also revealed a tumor on my sternum. I had lots of scans for that in the same time frame, so I'm assuming you might not be delayed quite as long. So very sorry you're being thrown another curve ball, but keep the faith. These darn scans. They turn up all sorts of benign things we should never know about!

Meadow

((LUV)) rest and relax, luv you!

Marsha, I hate the flu. Hoping you are feeling better today.

Haus, I am not good at reading scan reports...so I am hoping others can provide wisdom.

Hugs to Ally It was a beautiful day here, very warm the last few days which this time of year is unheard of. I understand much of the upper midwest is getting a huge storm tonight, hope you are safe and warm.

Lookingforward66

Meadow, not one bit better. Finding out 12-14 days for this one & I not at a week yet. Thanks for the wishes.

Luv, everything is going to be fine. I still have areas of pain at the spot of my tumor. I know it is just phantom nerve pain. Breathe. We are all still here with you

Annie, I truly think you got the best "C" word!! Love it. CURE.

Amy, I had to stop after only 2 A/C treatments. I had no choice as I would have been one of the chemo deaths no one likes to talk about. I have no regrets. I had my 3 year NED this last December. Do the best you can with your MO's advice. If you don't trust your MO .......move. I did.

Trust, yourself.

Marsha

CarolinaAmy

HausFrau... I got your PM and I will reply in the morning! No, they weren't able to palpate my tumor due to its location against the chest wall (central 4:00). Otherwise, your MRI findings sound very much like mine... and those measurements were much larger than the ultrasound and mammogram.

BanR

Talking of scans.. how frequently are mammograms recommended as a follow up test, post treatment?

ajb_12345

HausFrau, my tumor measured larger on MRI than in the ultrasound. I also had a mass on the opposite breast, they did a needle core biopsy and it turned out to be a ruptured cyst.

Luvmydobies

Thanks Ally, Marshaand Meadow! My stomach is still a little tight this morning and it's sore. My IBS is flaring a bit also. Must just be from all the stress overload I've had before the appointment. I'm relieved but it just takes awhile for me to completely calm down. Ugh! Love all of you!!!

Cathytoo

Lou53...First, I want to say that this is my first time posting here on this forum. I was diagnosed TN in November, 2015. Scared me to death. I was just calming down when I got the news that my first CT scan showed an 8mm lesion on the head of my pancreas‼️ Of course, that sent me into another tailspin. My MO said not to worry...probably nothing. This is called an incidental finding and this is exactly why they don't do scans after treatment unless you have symptoms. Well, do I have to tell you that I'm now not thinking of TN, but obsessing about possible pancreatic cancer. Sometimes I think that what we DON'T know is what's best for us. Anyway, I'm hoping for the best for all of us.

Allydp

Meadow - you're so sweet, thanks for thinking of me here! The lower half of Michigan has had such a mild winter and this latest storm is supposed to miss us as well. We got 17 inches very early on and not much since.I know I'm the minority, but I actually love snow (as long as I don't have to drive in it lol), so I keep hoping for one more good snow before the season's over.

Luv - hugs! Be kind to yourself the next few days. Do you have anything for anxiety you could take?

Marsha - hugs to you too! Hope you feel better soon!

bluedog

Welcome, Cathytoo, but of course sorry you find yourself here. Have you gotten a final opinion about the pancreatic lesion?

Lou53

Cathy, thanks for the reply. I guess there is nothing easy about this whole darn thing. Prayers that all turns out well for you. :

Cathytoo

bluedog...my MO never even told me about the lesion...it was my primary doctor. I've been doing a lot of research. It definitely is not connected to BC and is considered an incidental finding. It could have been there for a very long time. But, when I hear "pancreas" it scares me to death. From what I've read, the protocol is to redo the CT scan in six months. If no change...do again in six months. No change - forget about it. Easier said than done‼️ Sloan Kettering has a Pancreatic Cyst Survelience Program now because so many are found as incidental findings. Because mine is no small and on the head of the pancreas it would be major surgery to remove it. So, I'm just waiting until June for another CT scan. Since my MO never mentioned it to me, I'm assuming he didn't feel it was anything urgent. I keep telling myself that if I didn't do the CT scan for BC, I'd never know about it. Sometimes we're better off NOT knowing.

Allydp

Cathy - I'm so sorry. Some of us here are in the same boat with lung nodules. We just have to watch them and with no growth they'll eventually be ruled benign. But the wait isn't easy! I've had some other benign findings on scans that were scary as well. Like you said, sometimes it really is better not ever knowing about these things! Hugs!

CarolinaAmy

I've learned that any scan is going to show some weird stuff that we would never otherwise know about. My scans during the hospital stay showed 2mm and a large 2cm x 3cm nodule... that we'd never have seen except for a scan looking for something else. There was something on my liver as well that no one even mentioned after reading the report. I think it's just one of those things. Once we know about it, of course, we worry simply because of our cancer diagnosis. It's the catch-22 of why scans are awesome AND crappy, and a reason why doctors don't want to do them unless there's a specific purpose behind it. It causes more anxiety than it helps.

Cocker_Spaniel

Cathytoo welcome but sorry you had to find us. Remember this is only my opinion and your decision is what counts, but I would not be waiting for six months to see if there is any change in the pancreatic nodule of 8mm. I would be insisting on a specialist appointment a.s.a.p. It's ok for your MO to say don't worry, probably nothing, but he doesn't know that and I would be getting that checked out pronto for my own peace of mind.

LUV glad all was well so now go and see those wonderful Dobermans and forget scans, appointments and cancer for a while. You deserve it after all that stress.

BanR I have a yearly mammogram and ultrasound on my remaining breast. So far, so good.

CarolinaAmy I had to stop at 7 Taxol treatments because of neuropathy and it still hasn't resolved completely but is better than it was. This seems to be common with Taxol.

HausfrauMi Mike is correct they won't get a true reading of the size of a tumour until after surgery so easier said than done I know but try not to worry until all results are in.

Geeper

Hello everyone, I am new to this thread. I was diagnosed with IBC stage IV on 12/17/15. I had had an MRI to the brain, full body PET scan, and CT scan to the chest, abdomen and pelvis. The PET scan revealed 2, 1cm nodules to my lungs and I had a lung biopsy done which determined the nodules to be malignant; given those results on 01/08 and started chemo on 01/11/16. I am TN and on Taxol each weekx12. So far this is a duable TX plan and I've had minimal SE's. I feel like this TX plan is working (crossing my fingers). Hugs to all of you ❤

bluedog

Geeper, welcome but so sorry about your diagnosis. Cancer sucks. Glad you've had minimal SEs with the taxol. I tolerated it pretty well, too. Hug!

Cathytoo, glad that these cysts are common enough that yours may well be nothing, but how horrible to have to worry about it constantly. Ugh, yes, better not to know.

Peabrain

@Amy - I did not do my last two Taxol/Carboplatin treatments. My MO (along with me and my DH) decided that I was "too beat up" and that any benefit from the doses would be offset by the damage, especially the neuropathy. I finished 10 of 12 treatments and got the impression that he was shooting for 80% of the original treatment target. At the time, I was very stressed about it, but heard from many long time survivors who had cut it short. So I think it is more common than we hear about.

Now, two months out, I am very glad for the decision. Obviously if I have a recurrence in the future, it will give me something to second guess. But I believe that cutting the chemo short gave me the best balance between combatting the cancer and saving my nerve endings for immediate quality of life. My neuropathy is getting better and I am hopeful that it will fade to a manageable level in the next several months

Best of luck with your decision.

Meadow

Geeper and Cathytoo, welcome! Geeper and I are aquainted through her IBC thread, and I am so glad she is here with the TN sisters (and bros) !

Mamiya

Hugs ((((Geeper))))! I only had 11/12 taxol due to low blood counts (although I know I am not a great example because the follow on chemo failed - but I feel that taxol did work well, and I think I may end up back on it at some point).

Shopgal2

welcome geeper and cathytoo. Sorry you find yourselves here. I hope you will find the TN board supportive. I know I do. The gals here are really great.

Luvmydobies hugs to you.

Peabrain I feel like you about reoccurrence. I had reduced doses on 2/4 of my DD taxols. I worry was it enough? But I had bladder neuropathy and was scared it would be permanent. Thankfully it resolved after chemo. Scary to think the trade off risk but I was glad I didn't do full doses.