TRIPLE POSITIVE GROUP
Comments
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I fly all the time for work and never wear a sleeve. I flew to Aust last yr, 16 hours of flying time and no issues with my arm.
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hi everyone
i need some emotional support today - I start rads next week and while I am glad the active treatment is almost done i am scared s***less that its almost done (other than herceptin of course) when my MO said to me "see you in 3 months" I almost grabbed on to her lab coat sobbing
for those of you who are further out WHEN DOES IT GET BETTER i am an pessimist and hypocondriatic by nature so this cancer diagnosis is absolutely the worst nightmare ever. I am sure it is for everyone but i have met a lot of BC girls who are just much more positive and able to push the "what ifs" to another place in their mind ( i know it never leaves)
how does everyone COPE????
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Arlene,
I fly all the time too, and don't wear a sleeve. I was told wearing one when you don't have LE, combined with the cabin pressure, can CAUSE it.
Get fitted, take it with you so if your arm feels heavy you can slap it on...I flew with a BC stewardess a couple trips ago (MX)....and she never wears a sleeve....
Doesn't seem to be a "standard" on this.....
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Hi danielle-double O 7-123 Just to let you know Jan. 20th made 1 year PFC (post final chemo). September 6th my last Herceptin. (No Rads) I'm still NED. Remember we also have this hormone therapy. I will admit I was a little scared at first when chemo ended but now I'm OK with it. No reason not to think we're cured unless someone tells us otherwise.
Did you know that the number on killer of women is heart disease. I know I don't worry every day about heart disease killing me. I just do what I need to do to keep healthy. Hang in there. As you move further and further away from treatment you'll feel better both physically and mentally.
Rosem I hope you read what I posted above too. I saw my onc last April. Saw my BS last October. This April I see my NP not my onc (they switch off every year). So I'm basically seeing someone every 6 months as of this past October. The fact you are not seeing your onc all the time is a good thing. It means you don't have any issues. I'm looking forward to seeing fewer doctors. Here's a what if for you. What if you are cured? In order to be a survivor you need to live your life not worry about when it will end.
There must be something in the air today. I feel this is the 3rd post I've written today talking a few of us off ledges. Life really does get better as you feel better. (Can you tell I did both powerwalking and strength training the past few days
. I swear exercise keeps me sane). 0 -
Being able to exercise is a gift.
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rozem - when you figure out when it gets better, let me know! I am certainly better than after first being diagnosed, but wow, it is like two steps forward, 1.99 steps back and sometimes more.
I am far from being done with chemo, but I think I can relate. I was excited to start chemo to get this cancer killed off, but once it was time to start, I was terrified. Still am. And I would not be surprised if I am scared to stop once I get to the end. Nothing about this is easy.
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christina - Are you doing neoadjuvant chemo or did you already do surgery?0
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Omaz I hate to exercise… I love how I feel when I'm done though. It's a chore.
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Funny that all the paranoid posts are popping up. God knows, I stress over that all the time. Two more herceptins and I am done. Told my onc I was so worried and feelinf separation anxiety. He told me to keep coming to his yoga class and he will be there for me whatever I need. Love that guy.
I was just thinking that one year ago today, we were having dinner with the same couple we had dinner with tonight. I was 3 weeks past thenidentifying biopsy and about one week past the pathology report. I literally sat in the car trying tomsign a card thanking my friend, a NP, for her help. I was crying so hard I couldnt compose myself to go im. Finally calmed down, but we both cried through dinner.
What a difference a year has made. I thought we might get kicked out of the restaurant tonight.0 -
Hello!
I too am triple +. I just found out last month so everything is still rather overwhelming and a bit unreal to me. Still learning the lingo as well. I am on herceptin every week for 18 weeks with TC X6 every 3 weeks. Then I will have surgery BMX and more herceptin every 3 weeks for a year, then hormone therapy for 5 yrs. I just started the treatment about 10 days ago. My dr did do a CT scan prior to me starting along with what felt like a ton of other tests. Right not radiation isnt on the plan.
I saw a few women mention chemopause.. my dr told me that it would happen to me. When did it happen in your treatment? What should i expect? I am 38 so this wasnt something I was anticipating to learn about yet.
Thanks for all the information!
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Jen...is one of your parents an insurance person? There is a reason for my asking if so.
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hi Jen
I'm 43, 42 when diagnosed
i did chemo before surgery like you did - I started chemo last september and had 2 periods then that was it...chemopause for me since then (so since about november)
i started to have hot flashes at night and they have gotten much worse since i started tamoxifen (you will be on this aswell) i get them during the day now too
other than that i have not really had any other SE - but i have no idea anymore if my SE are residual from chemo, chemopause, tamoxifen or surgery - so much crap happening to your body it's hard to pinpoint exactly what is causing what sometimes
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I have some slight LE in my surgery arm. It is at the base of my thumb and at the top of my arm (where the floppy old lady skin hangs down). I had all nodes removed but don't have any idea what prompted the LE to pop up. (No injury. Was being careful with the arm.) I had to wait 4 weeks to get an appointment with a good LE therapist and will have to take an hour bus ride to get there. (This is the first time our Israeli government subsidized health care has failed me.) (There is a PT place a block from my home but they don't have an LE therapist). I've been doing my own post Op. exercises and keeping the arm elevated and so far it is not getting worse. Thank G-d.
Peggy
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Kitchenella, until you're able to see your LE therapist, there is a very active and knowledgeable community on the Lymphedema forum here, as well as information on the main Breastcancer.org site.
Judith and the Mods
.
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@ fluffqueen01 Nope my mom is a teacher down near Greenwood though and I grew up just north of Greenwood on Stop 11.
My Dad is in business but he has never lived with us.Thanks rozem ! I get hot already at night.. this is going to be a real trip! Hope the husband doesnt mind some cooler temps at night!
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Jen - Welcome! If you don't alread have one get a remote controlled stand fan to put at the foot of your bed that has a timer feature. It helps!0
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Welcome rozem and jen, what a crazy ride this is, so hang on!!!
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Hi Jen
I was 49 at diagnosis and peri menopause but still having regular periods. I had my last period 2 weeks prior to my first chemo. I did have some minor hot flashes in the early am hours (2-5am) but not that bad. Never drenching sweat. They went away after chemo even though I am on hormone therapy (Anastrozole). But everyone is different. I have another friend a few years younger than me, finished chemo almost 2 months ago. She's always sticking her head out the car window because of her flashes.
I would ask your mom what she went through. My mom didn't seem to get bad hot flashes either… but my sister did. Both had natural menopause not medically induced. At your age there is a chance your cycles will come back too. It could be a year or more.
Peggy I had to wait 3 weeks to see an LE MD and then had to wait to see the LE PT. You will be fine. 4 months is not that long. I would call your LE PT and ask what you should be doing in the meantime before you see her. Keep up with those post MX exercises because they will help. Drink plenty of water and avoid salty foods. Also I found walking gets my circulation going and actually helps move the fluid around so walk if you can. You can also learn more about LE at this site: www.stepup-speakout.org but remember these folks are not MDs. Most of the info is excellent but some of the recommendations to jive with my PT (LANA trained) recommendations.
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Hi, everyone. I started radiation last week and hate it. However, I will do whatever is necessary. I had to give my clinic some advice on being more respectful of women patients' modesty. They really took it to heart, so things are better this week. No LE. I started Tamoxifen with Rads last week-no side effects yet. I am waiting to see if I get chemopause--did not with chemo, but I don't know how the Tamoxifen will affect me. At first I cried about the possibility ofearly menopause, but now I wish for it! I'm 46. Herceptin now is only every three weeks. Time to schedule my 6-month MRI. I expect it to be clear. I don't know why being exposed to the technicians during Rads bothers me so much, but it does. I try to just go somewhere else in my mind when there is a male tech.
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Nancy - Rads was weird. I just thought to myself that they must have seen it all before. They go so quickly through the day and my center rotates staff so I didn't have the same folks very long. It was hard to relate to them. The chemo staff was just the opposite. I think it may take a certain very precise technical person to do the radiation and I think they focus on their job.0
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I am curious if anyone in this group is in my situation of being triple positive and BRCA1 positive. If there is anyone, I am interested in what your treatment approach is and how you manage to think of it all...thanks
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omaz - I had a lumpectomy before they knew if it were cancer or not. It was (obviously). Margins were not clear either. Onc not happy that I had the lumpectomy, said the surgeon should have just done a biopsy, and then gone right into chemo once they knew it was cancer, but what's done is done. So now I am doing chemo, and after the chemo I will have to either do a mastectomy or a lumpectomy.
All these posts make me curious about the hormone therapy. I don't know much about it yet but I was also told I'll need to do that.
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Christina that's a broad question. What are your concerns?
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christina - You have a special situation. They don't do the excisional biopsies as much as they used to I think. Hormone therapy - There are two main kinds of hormone therapy. Tamoxifen is an anti-estrogen drug that blocks the estrogen receptor on breast cells. The idea is that if any tumor cells are left behind and they need estrogen to grow, blocking the receptor with tamoxifen will cause them to die. The other kind is an aromatase inhibitor (AI). Aromatase is an enzyme that converts a precursor into estrogen. The AI works on the aromatase enzyme to decrease it's activity thus decreasing the amount of estrogen in the body. AIs (femara, aromasin, arimidex) are usualy given to post-menopausal women or pre-menopausal women who have their ovaries shut down. Tamoxifen can be given to pre and post menopausal women.0
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Mine was excisional also. The margins were cleared but close. Had I decided against a bmx, she would have gone back and cleared them better, as I understood it. At mastectomy a month later, there was basically nothing for pathology to look at. Everything was clear. So my path is based solely on the third biopsy that finally identified the idc.
Lago, we are considering coming to Chicago for St. Pats weekend . Made a reservation at the Dana with a great rate. Husband is pretty busy with accounting stuff then so we may have to cancel at soem point, but if not, will you be around?
Jen-the reason I asked is that just the night before, my husband came home and asked if I would be a mentor to the 37 year old daughter of his company's insurance rep. She had just been diagnosed and I thought maybe it was a coincidence. I know exactly where Stop 18 is. We are west in Center Grove.0 -
Good morning ladies and welcome newbies! These girls who have gone before and check in every day to help the rest of us are the very best gift we can get in this life and death struggle. One of the few really great things in this miserable process.
I saw my bs to discuss my options post neo adjuvant chemo and to start surgery scheduling.
First of all he was amazed at my questions. I told him you gals taught me everything and told me wht to ask.
We talked Mostly BMX v lumpectomy. Still trying to decide but intellectually and scientifically it appears that in my case unless something happens at surgery...the longterm survival rate is virtually the same either way .
First...he said mo's and bc's are seeing more patients with the separation anxiety you've been discussing. There are support groupsheaded by medical professionals popping up to address precisely those fears and insurance is paying or it.
He gave me a copy of my Mammaprint when I told him most of you had oncotype tests and numbers .
There is no score but I am considered HIGH RISK. I have a 22% chance of recurrence within 5 years without additional adjuvant chemo or hormonal therapy.
For Rozem who was having an anxious day despite getting a pathologically complete response to chemo....for people like you with PCR the news is very positive. The odds are very much in our favor. It is. Very good prognosis or you.0 -
That was the odds are very much in your favor to Rosem.
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thanks so much for your encouraging note ashla, sounds like you had a good mtg with your team
i always find for every answer i get i have 2 questions back!
my onc also was so impressed with my knowledge/lingo/questions - and its all b/c of this site
i always say i have a team of oncologists right here on these pages
so the 22% chance of recurrance that was told to you - how much does chemo/her/hormone therapy bring down that number?
the whole bmx/lump thing is such a tough decision. I did do a lump originally like i said but am really leaning towards a double when i heal from rads. My reasoning? i asked my BS if i have a greater chance of a new primary, he said yes (more than the rest of the population who has never had bc but i don't know by how much) - this was confirmed by another MO I consulted with. So more for peace of mind than anything else. The screening scares me too - i have dense breasts which means MRI's for me -yes, the dreaded MRI
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Rozem,
My bs told me that yes the chance of local recurrence is greater but the surival odds are almost the same. He tells all his patients not to panic if it recurs locally . Local recurrence doesn't kill. If it comes back we can do MX or BMX.
I was thinking exactly like you but just look at this forum. No matter which way we go MX, BMX, lumpectomy, chemo, rads.....does the worry end? No. We will all continue to worry but it seems that most of us will learn to live our lives despite this hanging over us .
I don't know which way I'll go yet . Right now I don't even want to look at my boobs ...or the rest of my body.... because I'm mad at them so it's not looking good for them!
You have every right to feel optimistic with your PCResponse.
I didn't ask how much treatment changes the odds. I'm not certain I need to know that if I've tried everything.
Btw he alo said it is not that easy for cancer to metastacize. He said cancers are not that smart
and itthey don't adapt well to the process of travel.0 -
Rozem statistics are really bases on your diagnosis, age etc. Asha may have 22% risk without additional treatment (granted that sounds a little low to me).
In my case here's the breakdown*:
Surgery only:
40 out of 100 women will be alive and NED in 10 years
58 out of 100 women will relapse
2 out of 100 women will die of other causes.Surgery &Hormonal Therapy:
66 out of 100 women will be alive and NED in 10 years
32 will relapseSurgery & Chemo:
68 out of 100 women will be alive and NED in 10 years
30 will relapse
2 out of 100 women will die of other causes.Surgery, Chemo & Hormonal Therapy:
88 out of 100 women will be alive and NED in 10 years
14 will relapse
2 out of 100 women will die of other causes.*Note that this doesn't look at how Herceptin also improves our stats.
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