TRIPLE POSITIVE GROUP

knmtwins

Elaine - in the 70's my mom had a radical mastectomy, breast, muscle and all lymph nodes that they could get. She died in 2006, never having any lymphodema, so... it is not a given. When you start thinking about getting them, use her as your positive thought. BTW - her breast cancer never came back either.

laolson18

Hi all, it has been a long time since I have felt a need to go back on this board.   My Mom was diagnosed back in January 2012 with triple positive IDC Stage 1.  Long story short, she went through all of the standard treatments including chemo, radiation, and herceptin.  She is now on Aromisin for adjuvent therapy.  All was going well until yesterday, when she went in for her annual mamogram.  Keep in mind she gets a 6 month mammogram also for just her right breast where the cancer was initially found.  The facility she went to now has a 3D machine.  They found two spots.  One now on her left breast, which is very small about 3mm and a 10mm spot on her right breast where the cancer was originally.  She is scheduled to go in for a biopsy next Thursday.  I did speak to the doctor who performed the ultrasound and she said she was not too concerned about her left breast because it is presenting as a benign tumor.  She said the tumor could of been there all along but now the 3D imaging is picking it up.  As for the right breast, she said it could be scar tissue, but she is not sure since cancer and scar tissue can look the same.  Given my Mom's history they just want to be super cautious, which I completely understand.

 

My questions are:

1) Do these 3D machines just reveal stuff that could of always been there with the digital imaging?

2) What are the chances of a recurrence when she has followed the standard treatment protocol and is still on adjuvent therapy?

3) Can scar tissue develop even 3 years later?

4)  Is it common to experience these false alarms once you are a Breast Cancer survivor?

 

Thank you in advance to anyone who reads my concerns!  It is truly appreciated!

 

 

chrissie29

Knmtwins-the study has a copyright of 2012 by American Society of Clinical Oncology.  The study was a ten year cumulative incidence of locoregional recurrence in patients with </= 5 cm tumors treated with mastectomy and >5cm tumors treated with mastectomy with variables of positive/negative nodes before treatment and node response after with/without pCR.  I don't think Herceptin was taken into account based on the timing and looking at 10 year survival, but what my RO said about the HER+ (as she didn't include that in my unfavorable list as to why I should have radiation) was that the HER drugs level the playing field so that wasn't part of her consideration.  I am not sure how many, if any, had HER+ cancer in the study or ER/PR+ for that matter.   Now I am curious.

chrissie29

Interesting info....
http://www.acr.org/~/media/40e521e42778421dbd4d414d09bb1070.pdf

momwriter

chrissie29- mine was lying face up. And she targeted chest wall, drain site (for seeding?) and the tumor site - and intermarry nodes up to my neck- full on!. (but you couldn't tell now from looking at me- no evidence at all). Sometimes I think I sense a little something in a tiny corner of my lung, but it could also be a sensory memory. Really my lung capacity has not been impacted. Because I was on a study, I still get echocardiograms every 3 months and all have been fine. My LVEF has always been low- 55 to start, and has essentially remained the same. I think it's worth looking into the face down radiation- that was not an option for me.

Elainethere- all of my lymph nodes 1&2 were removed. There were 6 sentinel of which 3 had micromets- 1mm or less than that.. I really struggled as to whether or not to have that ALND surgery as I was in a gray area (2 positive sentinels- definitely don't need to, 4 positive, definitely do). But out of caution I did it (my BS and RO pushed- my MO could go either way)- it was the only surgery that really hurt. And then they found only 1 more lymph node. so 7 in all- weird. I have not developed lymphadema and am building my arm strength through yoga and some light weight lifting.

However, I declined radiation to the lymph nodes as I was worried about lymphedema and they agreed that since nothing more was found in ALND they had probably gotten it all.

Laolson18- Sorry your mom is going through this worry. I just had a scare this fall- they found a spot on mammo/u/s- thought it was a cyst- didn't deflate at aspiration, so did a core biopsy - but after a couple of agonizing days pathology said it was just a fibroadenoma. waiting was horrible. Crossing my fingers for your mom!

chrissie29

When do you start with the anti-estrogen medication-after radiation or after Herceptin?

ElaineTherese

lago -- There was some debate about whether the lymph node removal would involve Level 1 or Levels 1 and 2, but yes, I think that the breastcare center here is a little behind-the-times. However, I don't think I would have gotten different treatment if I'd gone to my nearby university medical center either because my RO works there too! (He was a big proponent of Levels 1 and 2.) On a related note, a few weeks ago, I was talking to my MO about Lupron and having more hormonal therapy options. She looked at me and said,"Lupron is experimental! We will start with Tamoxifen, I think." So, yes, I think I'm in a "slowly-evolving" oncology world here.

SpecialK -- thanks for the link! I will start looking for a certified therapist now.

kmntwins -- yes, I hope I'm as lucky as your Mom! Lymphadema's a crap shoot, as far as I can tell, though the more nodes, the greater the chance.

Moonflwr912

laolson, yes. Yes. Yes. All of those things are normal things. If you would like to see the difference between the regular mammo and 3 D mammo, look at an ultrasound of a couple years ago and the new 3D ultra sounds. You can't believe the detail. I know it's not quite the same but you understand what you are looking at when it's a baby vs breast tissue! You can an see it .such clearer. So yes it could have been there all along.

The risks of recurring are the same as her doctor told her before as he had her info.

Scar tissue can develop any time it wants too.

And yes, false alarm are common. I had a lump appear within 2 months after I finished chemo. It was just a wonky lymph node but I was sweating bullets waiting. Hugs.

Much love to all on this thread.

laolson18

Thank you Moonflwr912!!  I just need some reassurance.  My Mom has always taking this stuff with stride.  It is me that needs to be calmed down.  I just need to learn to cope.  I really appreciate having a group to go to when I am seeking out information.

 

lago

ElaineTherese Also note that I have family members that have Lymphedema in their legs, with no surgery. I do believe this put me at a higher risk for LE.

Blownaway

Chrissie29/PBrain - I had 24 full breast and 12 boosts (left side) rads, after 4 rounds of TCH, plus 3 rounds of Herceptin only.  My LVEF went from 56 to 35 in 3 months.  It was the cardiology nurse who told me to take it easy, I just assumed that was really bad.  I gained weight during treatment but still just weigh 135 and am sitting/typing and having to take extra large breaths from time to time to feel like I'm getting enough air.  I intend to get more answers this Tuesday when I go back, such as the breathlessness I am experiencing and too fast pulse even with the two heart meds, one of which is supposed to slow it down.  Since the rads were to the left side, I want to find out if that had some effect on the heart and also want my lung on that side checked out. Already had a heart cath and there was no blockage. I've been unusually sedentary all during treatment but shouldn't have gone downhill this much.  Anyone think of something else to ask I'm open for suggestions.

honeybair

The AI is started after Herceptin and radiation.

I had 22 nodes removed, with no cancer found. I have no lymphedema whatsoever. My BS told me that whether or not you develop it is genetic, but I still avoid hot showers and heavy lifting of my right arm. Because so many nodes were removed, I have lots of discomfort when I lie down to sleep and suppose that will be permanent. I do use a mastectomy pillow which helps somewhat.

SpecialK

blownaway - how is your hemoglobin?  If it is low it can leave you easily winded.

chrissie - most start on hormonal therapy after the active treatment is done - either chemo or rads - but while you are still on Herceptin. 

Elaine - I had ALND and do have lymphedema also, but I had so few nodes in the axilla at levels one and two, that I would assume that my level three is equally pitiful.  I had a severe body-wide swelling event during chemo that triggered the LE.  I also had a general tendency toward swelling prior to BC - my hands would swell when I walk, run or exercise, and my feet always swell when I fly.  I had issues with swelling during pregnancy as well.  Since you have a lot of nodes you may end up with more at level three than others.  Take the precautions and find a PT - then hope for the best.

RobinLK

Laolson- I just went through a scare (ultrasound was this past Tuesday) and am still receiving herceptin. 5 palpable cysts along my mastectomy scar = 4 benign cysts and 1 keloid that looks and feels like a mole. Went to BS, then was sent to RO and then a call into MO, tumor marker blood draw last Thursday. These things can pop up anytime.

Chrissy- I started my tamoxifen and radiation at the same time. Was already receiving herceptin. It all depends on your RO and MO.

Blownaway

SpecialK - My labs were fine but you're right, I've had severe anemia when I was younger and that's what this feels like. Actually looking forward to a dr appointment this time. Really needing some answers.

On another note, I didn't start Tamoxifen until after chemo/rads were finished. The PA filling in that day didnt want to make the call (I'm 57, totally post menopausal, had complete hysterectomy, osteoporosis by the time I was 48.... Finally asked for a location change and got an onco who actually shows up at my appointments. The PA was great but I like my new onco even better.

SpecialK

blownaway - I hope they can determine what is causing these issues - it has to be frustrating.

JeniferE

RobinLK, thank you for sharing the radiation to the left breast link. My RO appt. was today. The doc was young and a good communicator. She said I was not a candidate for the laying on your tummy radiation as my breast is not large enough. She talked about the holding your breath technique to move the heart far away from the breast during the treatment, as the video link shows. I will ask how my heart looks during the ct scan at the SIM appointment, to see if my breath holding technique can move the heart to avoid any contact with the radiation beam. The machine used in the video looks helpful. I think I can do that on my own perhaps using a nose plug so air won't escape. I did synchronized swimming in college and love to snorkel. Will buy a nose plug to help. Thanks again!

Jeni

Blownaway

JeniferE - The rad tech put a pair of "sun glasses" on me that work like a virtual video game. Inside the lense, was a wide blue line (horizontal bar graph). I was told to take as deep a breath as I could and hold it.  The blue line was moved up to indicate how much air I took in. The tech is seeing the same graph on his screen and manipulates the blue line.  A thinner yellow horizontal line was added below the blue line that moved up and down when I breathed.  For each zap of radiation, I was told to take a deep breath and hold it and at this point, I had to get the yellow line into the blue line and keep it there while the machine did it's work. Maybe 30-45 seconds or so.  It's not difficult to do at all and I was told that if the yellow line is not where it is supposed to be, the radiation will not come on. 

The room also has laser beams coming from 2 different directions.  They line up the marks that they place on your skin with the laser beams by moving - not you, but the bed/table - until you are lined up to their satisfaction.  After that, you are not to move at all.  The mold that they make of your back during sims is always on the table when you get there and helps to keep you correctly positioned.

One funny thing, with the glasses on, I lost my orientation within the room and the table/bed moves in every direction.  When I was finished, I sat up and almost fell about 4 feet down to the floor.  I did not realize that the bed/table had moved upwards.

Hope this description helps.  You won't need a nose plug. 

 

ArleneA

Happy New Year All.  Goodness, I haven't been here in months.  Doing a quick read back to see how everyone is doing.  Sadly, it does look like way too many newbies to this group.  You've found a great spot!

Cowgirl13

Blownaway, I had the same procedurre for my radiation on my left breast. It was a piece of cake as I was able to hold my breath very easily. That was 5 years ago and no heart damage.

formydaughter

I called Genentech Onco nurses line for Herceptin. I'm trying to get an answer to a question about when my 12 months of maintenance Herceptin will end. In the middle treatment, I missed 2 when I was too sick from chemo and they were giving me a break. I restarted with Herceptin alone. I was not sure whether we would add 2 treatments on to the end, or whether I had to restart the 12 mos. when we picked back up after the break. My MO hasn't yet decided, as this is out of range for rx. So, I figured that Genentech the drug maker would know. No such luck. The response was that they had no clinical trial data on it so they could not give me an answer. Wondering if anyone else has an experience with a break in the middle of Herceptin treatment and what that did to your end date.

Genentech was very interested in any and all SEs I've had from Herceptin and Perjeta. They are actively trying to gather this data, and said that the FDA May be contacting me (I gave permission for this) and my doctor (permission again), to learn more. This experience was positive. I encourage others to communicate with them too, if it will lead to better treatments now and in the future for HER2 positives!

efcjax

I had to skip herceptin treatment once and was told it would be added to the end.

momx2

Happy New Year everyone !

Sorry haven't posted in some time but been a roller-coaster ride , Tamoxifen making me sicker than chemo

SpecialK

formydaughter - I think in most cases they pick up where they left off so that you get the 17 or 18 doses (that number varies - some have had 17 infusions, some 18).  So your year of Herceptin may become a couple of months longer, but you would not restart the year over for a couple of missed doses, particularly for a node negative, early stage BC.

JeniferE

thanks Blownaway! Will ask about the glasses. The RO simply said breath holding with no "gear" to help. Will take your description with me to next appt.

linda505

Hey all, I was checking on the port removal process and the surgeon who put mine in only does the removal at the surgery center with twilight. I was really hoping to have it removed with a local - can I ask what you all did?

Hope everyone is doing good!

lago

Linda I also had my at the hospital under twilight. Pretty easy. I was told to eat lightly afterwards… but it was already 1pm and I hadn't eaten till 9pm the night before. We hit the Italian joint around the corner and I ate an entire service of spinach lasagna. The bread too. I was starved

Blownaway

I'm getting mine out tomorrow and really hoping for twilight. I just had a heart cath done with just a local and was very uncomfortable throughout and eventually passed out just before time to put me in a wheelchair and go home. 

knmtwins

I keep reading about "tumor marker blood draws", I do not think I have had any. What are they and when are they done.

As to radiation, I thought only node positive got it... also, how do they figure this our it you are pCR after neoadjuvant chemo? Is it based on the MRI done prior to and during chemo? If so, that didn't show anything in the nodes.

knmtwins

Blown, I just read the port comes out tomorrow. YEA, showers will be almost normal... I know, the boobs are different, but that port freaks me out every time I run my hand, washcloth over it in the shower. Also, now that I'm on my 2nd fill for the TEs, it prominently sticks out. Did it do that the whole time, and I was too chemo sick and drugged post BMx that I didn't notice it... Who knows...