TRIPLE POSITIVE GROUP

mom2threeboys

Blownaway - congrats on getting your port removed tomorrow. Hope it is easy and that you get the twilight you're hoping for so you can sleep through it!

linda505

Thanks Lago and Blownaway - I guess I will go ahead and do the twilight. It is just that the surgery center uses an anesthetic group that isn't in my network and it always turns into a fight getting that bill paid. I am pushing everything forward to get everything done before March 31st when my current insurance runs out. I had a shock when my first treatment of Herceptin this year cost me $3000. That is my deductible so I have now met it and that insurance will end at the end of March due to the company closing. I never realized that they treated the infusions as "inpatient" rules and therefore are 100% after meeting your deductible. I met my deductible with my surgery prior to starting treatment so I was just paying copays since. Imagine my shock when I saw a $3000 bill when I was expecting $60. I had that money saved cause I was planning on getting my port out with whatever new insurance I end up with and was going to use that to pay the deductible on that insurance. But now I have no choice but to get the port out prior to March 31st. I will have to get my last herceptin another way as my last dose is supposed to be March 31st too. UGH - I have when finances drive medical decisions - but I just have no choice.

lago

knmtwins my oncologist doesn't do tumor markers for early stage because they are unreliable. Never had one.

PatinMN

linda505 - I had my port taken out at the surgeon's office with just local anesthetic.  It was very easy - I felt nothing (after the pokes for the lidocaine or whatever they used), except I did feel a sensation when the surgeon was actually pulling out the tubing.  I chatted the whole time with the surgeon and nurse.  I was in and out in about 45 minutes or less. 

linda505

Thanks Patin - I wish my surgeon would do that but she only does it at the surgery center with twilight.

SpecialK

knm - CA 27/29, CA 15/3 and CEA.  Not all docs do them as they should be used for trending info, and can be unreliable due to a large number of things - medications, inflammation, etc.

Radiation is not used just for positive nodes, but also for close chest wall margins and close skin margins.

Moonflwr912

I still have my port in because it does not stick out. But since I also have a pacemaker they will do it in the OR with a surgeon. Guess they don't want to pull the wrong lines. LOL

Also no tumor markers here. MO says not reliable so why bother.

ang7894

If you don't do tumor markers then what do they do  to check on you besides a mammo? scan's yearly ? Because that's all my doctor is doing.

I get once a year mammo and blood work done every 6 mo that's it.

Bren58

linda I had mine taken out by IR with just a local. Piece of cake.

knmtwins, I never had tumor markers either. In fact at my last 6 month check up that was 1 year after finishing Herceptin, MO didn't even do blood work! All we did was talk about my issues with the AI drugs. Since I had BMX, there are no more mammos and he doesn't do routine screening either. So, I just figure the cancer is gone until I am told otherwise

knmtwins

Special K- thanks about the radiation. I couldn't figure out why my MO asked what my BS said about radiation, as I thought he was managing my cancer... but with neoadjuvant chemo, I guess they are trading back and forth... but I digress, since it has to do with close margins, and she was in there doing the surgery, she would have an idea. Fortunately, it was in the center, the only close margin might have been nipple, so it was removed during surgery, and the surgery was pCR

lago

ang since I had a BMX I only get felt up. No blood work. That's it. So far no problem. I will get scans if there is a symptom or lump.

Skoolgirljen

My last Herceptin treatment is on February 6th. How long after your last treatment did you ladies have your port removed? I'm a teacher and when we say the pledge of allegiance everyday, I put my hand right over it. It's slightly creepy and I'm ready to get rid of it!

SpecialK

skool - ask your MO - some ok it right away as long as your counts are good for infection risk purposes, other MOs want you to keep it for a while.  I think both lago's and mine requested that it stay for a bit.  I actually still have mine - mostly because it is subclavian and high up so the incision would show in any neckline - it was placed during BMX so I have no scar currently.  My MO did finally say I could have it removed if I want to.

lago

Skoolgirljen Yup my MO preferred we kept ours in for 2 years because that is when most recurrences happen. My treatment center will not put the port back in the same location because of increased risk of blood clots. I had it flushed every 3 months. Most folks do it more often.

ElaineTherese

I love my port; it is so convenient. But, if I no longer need it in a few years, that will be good news and I'll welcome its removal.

momwriter

Skoolgirlie- I had my last Herceptin on a Wednesday and the port out two days later.

Mommato3

Last fall I asked my MO what she told people about getting their ports out. She said she normally says a year but it's completely up to them. I told her I couldn't have my lift/reduction until the port was out. It's down in My left breast. She said to go ahead and get it out whenever I want. My neck has been sore where the line for the port is. At my last Herceptin treatment, she said to just have it taken out now instead of waiting for the surgery. I'm going to wait. I do get nervous sometimes thinking about it being gone. Crazy thinking...I'm jinxing myself.

Linda, the hospital where I get my infusions called me the beginning of January to tell me about Genentech's co-pay card for my Herceptin treatments. The info I received said They will pay up to $24,000 of your deductibles/co-pay. It's submitted to your insurance first. They will pay whatever remains minus a $100 co-pay. Maybe you could call your hospital to see if they can get it for you? Maybe they will cover that first treatment? I don't know if there was a deadline to request it. It's definitely worth checking into...you could get your money back!

LizA17

My MO told me to have mine removed about a month after my last herceptin treatment.

Brwneyedgirl

My last Herceptin is Monday.  The MO and the BS said I can have it out any time after Monday. The BS will do it either in her office or in the surgery center.  My choice.

laolson18

Hi, so my Mom is scheduled for her biopsies tomorrow.  I was able to find out a little more information from the doctor's office performing the biopsies.  As it turns out, they initially questioned the left breast (the good one) during the mammogram, which  prompted them to do the ultrasound.  The ultrasound was then performed on both breasts, since why not.  That is when they saw the other spot on her right breast near the lumpectomy.  The 3D mammogram never picked up the spot on her right breast, only during ultrasound was it found.  As far as I know, she has never had an ultrasound done since after her lumpectomy.  I guess my question is, could scar tissue easily show up on an ultrasound but not a mammogram?

Thanks in advance for keeping me sane during the waiting game......

Quick update - I called my Mom's breast surgeon's office and spoke with the nurse.  She said it is most likely scar tissue and not to worry.  She said she gets these calls all of the time.

 

 

Blownaway

Got my port out yesterday. Not bad at all until the deadening wore off and then it felt like someone had put my corsage on with a staple gun. It's better today.  Last Herceptin would have been December 18th but the heart damage was discovered and all cancer treatment ended.  Would have continued until July.  I scheduled port removal as soon as I could get in.

SpecialK

blownway - sorry you are uncomfortable but the analogy of the stapled corsage is hilarious!

Blownaway

Keepin' it light....

SpecialK

That is the right approach!  Hope your pain eases up soon!

Bren58

Blownaway, I loved your staple gun analogy! And it pretty much sums up the way mine felt too after the lidocaine wore off!

mom2threeboys

Blownaway - know its not funny when you're going through it but you made me laugh as I wait for labs. Serious people all around me think I've lost it!

Kthielen

Congratulations Cassiecat!!

GG2

Is it possible to have a new thread for discussions on ports staying or going? My last Herceptin was in October 2014 so I figured they would want it out. Today at my first 3-month checkup, my MO said that keeping it for 2 or 3 years was a reasonable decision because the recurrence risk for "my type of cancer" is higher in that period. I don't believe I've heard that before. I'm seeing the surgeon tomorrow and listen to what she says. But I'm glad I just came upon these posts about ports. I guess I'm feeling like Mommato3, I don't  want to jinx myself, and it doesn't bother me.

kaydeesmiles

Hello everyone,

I am new to this thread. Please forgive me if I type something that doesn't make any sense right now - but my head is still spinning.

Has anyone here ever been diagnosed as HER2-negative initially, then subsequently told you are HER2-positive?

I was initially told I was HER2 neutral so a FISH was ordered that showed I was below the amplification mark.

That put me in the HER2-negative category and I was prescribed all the general treatments for a HER2-negative patient. Surgery, chemo, rads, tamoxifen - but had a recurrence relatively quickly. I was switched to Faslodex and Arimidex which seem to slow progression but not stop it.

As soon as the recurrence was confirmed I started badgering my onc and anyone else in the office who would listen to have a tissue sample sent to Foundation One. That took months in part, I believe, because my onc is not that big on Foundation One or its suggestions/recommendations. I finally called Foundation One myself along with the hospital pathology departments that had my tissue samples to push the process along.

When the results came back I was told that 4 or 5 mutations were found, that there was a HER2 mutation, and it looks like I'm HER2+. The onc told me that it's not common - but sometimes a stain test like FISH can yield different results than molecular tests. What the blank? I've been trying to fight this for two years while doing nothing to address a key part of the battle?

Anyone heard of anything like this? Is Herceptin the usual starting point? Are there other drugs or drug combos that are standard when the HER2+ is first discovered. These are questions I'll ask my onc on Friday but I was hoping to brace myself my finding some info here.

Sorry for the novel but SHEESH!

Kay

SpecialK

GG2 - that is why lago and I both kept our ports - this is a MO philosophy thing - some want you to keep the port for a while and some don't worry about.  They just figure if you recur and need a port they will put another one in.

kaydee - my understanding of the way FISH is resulted is that it is either positive or negative - they either see amplification or a normal level of the gene expression.  I would imagine it is possible that your sample and/or testing process could have been flawed.  Are your docs sure this is not a new primary?  Also possible, that since tumors are not homogenous - your initial testing sample was correctly resulted but not from an area of your tumor that may have been Her2+.  I don't recall seeing anyone on the Triple Pos thread who discovered after the fact that they were TP - so I have not seen anyone who did not have Herceptin and/or Perjeta from the outset, if systemic treatment was required.  I don't know what the protocol would be - as Herceptin is normally given simultaneously with chemo - usually Adriamycin and Cytoxan followed by Taxol and Herceptin, or Taxotere and Carboplatin and Herceptin, with or without Perjeta, or for smaller Her2+ tumors, they also give Taxol and Herceptin together.  I don't know if they would give them without chemo agents even though you have already had them previously. So sorry you are facing this problem!