TRIPLE POSITIVE GROUP

twiggyOR

Hi demarie. I don't post on this thread much but I read it often. There are many knowledgeable ladies here. I am also a relative newbie (round four of six is in the books). You will definitely want to discuss whether to do chemo before surgery. Some of your treatment and surgery options might change based on your decisions. I also recommend finding the surgery and chemo threads for your month. It helps a lot to connect to others who are on the same timeline.

I am so sorry you had to join us. 😟

myajames

Hey Ladies...

I was recently (on Friday) diagnosed with LCIS that is +++. I know that LCIS is not cancer, and haven't seen my pathology report, had an MRI or scheduled surgery yet... I see my doctor tomorrow. I'm trying to figure out the significance of HER+ in LCIS. I'm wondering if it will make a difference in my treatment plan.

LCIS was found in a core needle biopsy I had for a suspicious mass.

demarie

Thanks everyone, I will be sure and ask the mo when I meet with her tomorrow about my options for doing chemo first vs after surgery.

rosesrx

Mya, welcome and sorry for the reason that brings you here. It sounds like you have biopsy results, your doctor will point you in the right direction to BS and MO. Remember that the biopsy is just a small sampling of the tumor and a pathology will be done on the whole mass and the characteristics may change or be added. We will be with you as you jaunt down this bumpy road. Keep us posted.

Anonymous

Greetings and happy holidays to everyone! I just skipped past 30 pages of posts, so I hope everyone is doing well.

I've been away for a couple months and since then, there has been a lot happening in my life. Real estate has been busy, so there is that. My son got married on October 10, and that was a ton of work, but lot of fun! A week before the wedding, the owner of my husband's company decided to sell it to another similar family and they don't need two VP of Finance, so he is out of a job. We are about five years away from retirement readiness, so he is starting to look around, Althugh I think he likes the hand out and do home project life, lol.

I crammed in all my doctor's appointments before our insurance changed, had a colonoscopy, etc. Colo was ok. Had two small polyps removed for the first time, so that was a little disconcerting but they were benign thank goodness. Saw my onc, mentioned that I have two trigger fingers and wondered if I should change AI brands. He said no that it could be due to anything. That was highly annoying, so I just sent him all the studies and docs that relate to Arimidex and trigger finger. Told him that while I agree that it could be caused by a number of things, it seemed a little suspicious that all the arthritic things, the thumb and wrist tendonitis and trigger finger all happened in the 18 months I have been on Arimidex and started about seven months in. I am monitoring it for the moment as it isn't terrible, but will call if it gets a lot worse.

One of my daughter's friends, 26 years old, was just diagnosed as triple positive. Just unbelievable. It certainly freaked out my daughter!.

I will be back on here more often now that things have slowed down some. I hope those of you going through treatment are tolerating things well, and those of you done are happily enjoying life!

lago

myajames it's not unusual for LCIS and DCIS to be HER2+. I think about 50% of the time but only about 1/2 of those who go invasive are HER2+. Dicsuss with your MD but if after surgery LCIS is your diagnosis I don't believe they will be recommending chemo.

fluffqueen01 I had 2-3 trigger fingers in the morning with Anastrozole. Now after 1.5 years on Exemestane I have it back. Goes away faster than the morning duckwalk though. Nice to see you back.

TTfan

A belated but but heartfelt Thankyou to all those congratulating me on finishing the year of Herceptin!

I couldn't quite imagine getting here when I started, but here I am. Like so many much anticipated life transitions, there is no dramatic change that happens. It is the little things, like scheduling a vacation without factoring in medical appts or driving by the lab knowing my veins are not going to be stabbed in the near future. I also like being asked how I am doing just like someone would ask anybody else, without that very worried and pained look in their eyes. And I can wear my seatbelt without a port that always hurt!

I wish all of you in/starting treatment the patience with yourself and others that gets you through! I'm here cheering you on

myajames

Thanks Lago

KateB79

Hi Ladies,

Forgive the cross-post; I'm trying to gather as much information and as many opinions as I can, and you've been absolutely fantastic since I've been participating in this discussion. Here goes:

I scheduled my surgery (a prophylactic MX and revision to the original MX site) for 12/30, but I think it'd be best to wait until May, when the spring semester comes to an end. That'll give me time to get strong again after four months of hard chemo, get back to the gym, get started on Tamoxifen, and resume my life. It would also give me a lot more recovery time than I'd have if I had the surgery this year. This is logic speaking.

I'm still doing some pretty deep soul-searching about this: on one hand, I want the "healthy" breast GONE, especially because my breasts have always been dense and lumpy, and chemo has knocked the lumps out of the one that remains, which freaks me out. I also want to be realistic about recovery time. If I have the surgery on 12/30, I might have a hard time getting back into the classroom for the start of the semester on 1/10, and that's not something I want to mess with. Oh, and the whole health thing. That's important, too. Again: logic.

But here's the rub: I'm terrified that if I wait until May, the pathology will come back bad and I'll have to hear "we found a little bit of cancer" again, do hard chemo again, etc. I'm strong, yes, but I'm just not sure I could handle it if that were to happen.

Anyone have any (more, since I've already posed this question, albeit with a slightly different rhetorical tone) wise words for me? I know I'm beating this to death, here and elsewhere (not to mention in my head), but I'm having a hard time making this decision and could use an objective perspective or six. Does five extra months have the potential to mean more cancer, or is that just my abject fear talking?

Cowgirl13

I would say take care of cancer first

It could happen they find cancer (not saying it will). Also why are they doing a revision on your mastectomy

Hopefully Special K will post. She really knows a lot about these things and her posts are very clear.

KateB79

I asked for a revision because I had a skin-sparing mastectomy but have decided against recon.

I know that bilateral breast cancer is rare. But it's possible. And having BC at 36 is rare, too, but I'm walking proof of that possibility. . . .

This is a true dilemma.

Mommato3

Kate, why are they doing a revision?

ElaineTherese

Kate,

I had my lumpectomy on 1/11 and was back in the classroom on 1/12, even though I had a drain hanging out of my armpit. But, I only had a lumpy and ALND. I had my husband come with me on 1/12 to write on the board and distribute syllabi and other materials (he's a college professor, too). The first weeks back, it was tough to reach very high on the white board, but otherwise teaching was OK. If worse comes to worse, I sit on a table while I teach. (That's how I taught through the end of my twin pregnancy.) Well, enough about me. It's not a contest to see who is more masochistic....

Bilateral cancer is more rare than people think. I believe you can wait until May and there's a teeny tiny chance that your pathology report will come back bad. If you're afraid to take that teeny tiny chance, I don't blame you. Chemo's no picnic. But, only you know what you can take. How did recovery go with your first mastectomy? Did it flatten you, or were you able to carry on some basic tasks? Maybe it's me, but teaching doesn't require much energy until the grading becomes onerous. Right now my life is consumed with my grading, and it can be pretty stressful. But, the beginning of the semester is pretty tame, and grading only picks up after the fourth week.

Good luck!

Mommato3

It's a tough decision. I decided on a UMX instead of a BMX. The primary reason was because I didn't want to lose feeling in my left breast. The breast reduction I had done did affect some of the feeling in the nipple. That made me sad. I've had moments where I've thought about removing the other breast. Especially when I need an US after the mammo due to my dense breast. I don't really worry about a new occurrence. I just don't want to come back in every time for an ultrasound or an MRI. You have to do whatever helps you sleep at night. That's all any of us can do

Mommato3

Kate, there shouldn't be any cancer. You had an MX first which would have removed all the cancer. The chemo after that would have gotten any stray cells. Up until recently, the majority of people had an MX/LX first, then chemo. I wouldn't think six months would make a big difference. As longas you can deal with the recon you've already had done.

SpecialK

cowgirl - thank you for that generous compliment!

Kate - my two cents goes like this - you have removed the cancer with the first MX. You have had chemo to treat systemically, along with two targeted therapies. You will be beginning anti-hormonal a fairly soon, correct? So, should you decide to wait to do the other MX and revision, you will still be receiving Herceptin and taking the anti-hormonal which should provide protection against a new primary. It is hard to predict the what-ifs, but the likelihood of a problem occuringwhile still being treated is pretty slim I would think.

jodes001

Hello!

Demarie- I will be a Dec start chemo lady! I already had lumpectomy on Oct 6. I will be starting chemo Dec 7. I put it off because my daughter got married last weekend, Nov 21. I will be using cold caps to try and save my hair. I also will be taking off work for awhile. Good luck with your surgery!!

wabals

jodes001

Have you heard of the ATEMPT trial? Ask your onc about it. 75% of participants get tdm1 with no hair loss and few SEs.

Worth checking into

demarie

Hi, all Wow trying to do Thanksgiving dinner and being dx'd this month and working full time. What crazy whirlwind of appointments, tests, and just life in general. I don't even know where the week has gone. You all that have been on this roller coaster ride for months/years are just amazing. I did have my first appt. with my mo on Monday and after that we decided that going with chemo before surgery is our best option. So I have been kept pretty busy, still have to get my baseline echo next week then the port goes in on the 9th. I do not have my start date for chemo, but I am sure it is going to be very soon after. Take Care All

CyndiNic

Jodes001 - we start chemo the same day. Looks like we will have a similar treatment plan!!

Vildanbt

My mother had 2 cycle neoadjuvant chemo. We just had ultrasonography. When compared before chemotherapy there is no shrink. Axiller lymph nodes shrink little but tumour size is same. Do you have any like that? Is it early or our chemo is not working ?

jodes001

That is so cool! Someone to compare notes with!!

rleepac

Hello ladies. I think I've posted on this forum before but it's been a while. I am 19 weeks PFC, 15 weeks post BMX, and 2 weeks post exchange surgery. I'm doing Herceptin every 3 weeks through April I think and I just started Tamoxifen last week.

I find the Herceptin is hit or miss with SEs. Usually I feel ok but sometimes it knocks me on my butt. I've had chronic diarrhea since Taxol/Herceptin/Perjeta so they're going to do a colonoscopy in a few weeks. I've tried probiotics and dietary changes to no avail. Stool cultures are negative so they think it's inflammatory but they want to be sure.

I have a question about ports. How long did you keep yours in? Does TP play into the decision to keep it for a few years after tx is done? I read somewhere that Her2+ should keep the port for 2 years but I don't remember where or why.

Oh and just for the record...pathology came back pCR - yay!!!!

Bekah

debiann

Regarding ports, I've read that some are advised to keep their's for awhile, but I was very happy that my MO said to get it out as soon as herceptin was finished. I asked what if I needed it again, and he said then we'll give you a new one. I got mine out during reconstruction sx.

While my port didn't really bother me physically, mentally I hated the thought of having something foreign in my body. (It was how I knew I'd never adjust to implants). I cannot begin to express how happy it made me to get my port out.

SpecialK

rleepac - my MO likes his Her2+ patients to keep the port for a couple of years.  Stats indicate that if you are going to experience a Her2+ related recurrence it usually comes within that timeframe.  Generally, recurrences later than that seem to be driven more by the ER+ aspect than the Her2+, or so it is thought.

lago

Bekah My oncologist likes her patients to keep their port in for 2 years total because that's when most recurrences happen and you shouldn't get it put back in the same place (due to risk of blood clots). I kept my for the 2 years and thankfully never needed anymore chemo. It's great for blood draws, IV or even dye for scans if you have a powerport.

diarrhea is quite common with Perjeta too. I didn't get Perjeta because it wasn't approved at the the time. I do have IBS but have the big C instead. My first chemo was a challenge due to big C. Didn't have issues with Herceptin. I assume you have seen a gastroenterology. IBS isn't always the easiest thing to control. I am OK with diet mostly. I know what my triggers are. Have you tried Metamucil? I hear it works for both the Big D and Big C

rleepac

Thanks for the info on ports. I just haven't had the discussion yet with my MO.

I've tried Metamucil but it didn't help. I did finally see a GI specialist and that's when they decided to do a colonoscopy. I have that scheduled for Dec 2

TTfan

demarie - I was right where you are last Thanksgiving and can barely remember any details other than the profound overwhelm. It does get much better, maybe not easy, but better. The realities of treatment are most often easier than how you imagine them beforehand! Go easy on yourself this holiday season and take every offer of help you get! This time next year you will be where I am now, gratefully returning the manykindnesses shown me during this past year of treatment.

KateB79

I finished hard chemo on Wednesday; my oncologist wants me to keep my port at least through Herceptin, and maybe for a year beyond that. She said the same thing SpecialK said here: HER2 is most likely to recur in the first two years.

Here's something: she also said I'm NED since surgery; the chemo was just to "mop up anything that was left over" (negative nodes). She's not doing any scans or even tumor markers. . . is this normal? I mean, I'm okay with it; I know what to watch out for; I've scheduled my second MX and scar revision surgery for 12/30, to keep this in 2015 (knock wood). But no scans? I'm a bit floored!

SpecialK

kate - yes, it is pretty normal and very common.  Since you were node negative there would also be thought that your cancer was contained in the removed breast.  Most oncs only scan for symptoms due to the prevailing thought that things can't be seen on a scan until they are of a certain size and/or causing symptoms, and finding them very early does not change anything.  Also, there can be false positives, which then have to be investigated, and cause stress and unnecessary testing/procedures.