TRIPLE POSITIVE GROUP

Ingerp

Moody you look great!!!

coachvicky

shelabela ... Praying today is better for you and your MD calls.

MoodyBlues .... Great pictures. You look wonderful. Call or do a chat with Land's End for a swim top. They are pricey but last me at least 2 seasons and I swim just about everyday. They have mastectomy swim tops / suits.

Some days it does seem like a bad dream but it wasn't.

Vicky

shelabela

finally called me back. Going to wait a week and if i still feel the same they will do an ultrasound. Ok. Let's play the waiting game.

Bheg79

I have a question about genetic testing - I am 38 and triple positive - I have no family history of breast or ovarian cancer - my oncologist doesn’t think I need it/I wouldn’t meet the criteria to be considered so I kind didn’t think twice about it. I went for a follow up appt after my first chemo but saw a diff oncologist as mine was on holidays. He thought I should do the genetic testing even if I have to pay for it- he thinks it will be negative but just to be sure - now I’m confused. Any opinions or experiences on this?

Hope all is well with everyone

ElaineTherese

Hi Bheg!

I'm not sure why you're genetic testing wouldn't be covered. (Is it your insurance? My insurance covers it for anyone under 45 years old.) I would get the genetic testing, if possible. If I had tested BRCA+, I would have made a different surgical choice. I would have chosen a double mastectomy and an oopherectomy (surgical removal of the ovaries). People who are BRCA+ have a high likelihood of both breast cancer and ovarian cancer. However, because I tested BRCA-, I just had a lumpectomy (like you did). Also, if I tested positive, I would have had my children tested as well. As it is, I'm not getting them tested.

Hope your chemo is going OK!

Ingerp

I don’t have a family history of any kind of cancer so don’t think it’d be worth it to get genetic testing. My BS and RO said I might want to get it down the line at some point but they didn’t seem interested for this dx. That’s just me, though.

Photogirl81

hi Ladies,

Moody, you look great! And I totally get what you said... I have days when I don't think about cancer, and then I have days when I tear up a bit... about 80-20%, so that's not too bad.

Shela, praying for you to be okay.

bheg, I am 36, and waiting for my genetic testing result. My mum has ovarian cancer, and she is Brca positive, so all my doctors think that I will test positive. Even if I do, I will keep my boobs. We will monitor my health closely, so if anything happens again, we catch it very early. If I test positive, I will have my ovaries removed. Maybe you could also benefit from knowing.

hapa

Bheg - I am 41 and my oncologist recommended it due to my age at dx. I don't have any kids but I do have a sister and she has two daughters so I wanted to get it for them as much as for myself. I tested negative for all known mutations.

Shela - I hope you're doing ok and this turns out to be nothing!

LovelyLeo

I am now joining the triple positive community. Originally Stage 2B before surgery, but after im now 3C. Im also 18 weeks pregnant. Really scared with 26/32 nodes positive. Not feeling so great.

Reading your stories are really helpful.

whywhy

Bheg, I am 45 and has no family history either. Did the genetic testing because I have a young daughter. Surprisingly found two abnormality. BRIP1 and MUTYH. BRIP1 has a slightly high association with ovarian cancer. I then had a surgery and took ovary out. Struggled with the decision whether to have my daughter tested but decided against it.

Moderators

(((LovelyLeo))) Hugs to you and your babies. We read you are with specialists who are familiar with treating pregnant women. So happy you found them. We're all here for you!

coachvicky

LovelyLeo

Welcome. Ask away. Ask anything. This is a wonderful group of women who probably kept me sane. My bearing days are over but I do remember all the joy!

You are on my prayer list.

Love, Vicky

shelabela

Well Dr didn't seem to be worried about cramps, orders for an ultrasound and wait and see. I am also bruising very easy any more sometimes for no reason.

Welcome to the new ones! As you have heard this is a great bunch of ladies. I still have horrible chemo brain so not going to try to keep going back for names. Sorry.

Tresjoli2

lovely and bheg welcome to the thread. I had just turned 40 3 weeks before diagnosis, so while I was 40, technically the cancer showed up when i was 39 at least. I decided to do the genetic testing. I also had some limited family history on my fathers side, my mom was adopted so unknown on her side. I would have made different choices if anything showed up, so for me it made sense. Bheg Good luck with your decision.

Lovely...I wish I could give you a big hug. Is this your first baby? A virtual hug will have to suffice. There are some women here who were pregnant while being treated, in fact I think they have their own thread. I'll try to find it.

Shela watch and wait would drive me crazy....hoping for positive outcomes.

Love to all. I am on vacation in Maine, and was missing my triple positive sisters. That's my six year old daughter. Trying hard to soak up minutes like this like a cool drink of water. Cancer sucks, but it taught me what really matters...

deni1661

Moody, thanks for sharing pictures - looks like a wonderful vacation. You look great! Hard to believe the difference a year can make. Soak up all the joy from your grandkids!

Tres - that is an awesome picture. Every minute counts with the little ones, they grow up so fast. Enjoy your vacation!

Shela - waiting and wondering is so difficult. I have a new mantra that am trying: faith not fear, turn it over to God. You are on my prayer list

deni1661

Bheg - I had no family history so my MO didn't feel genetic testing was necessary. I'm surprised your insurance is not covering the test, that stinks

Lovelyleo - welcome to our group. You will find much needed support and inspiration from this wonderful community. I wish I could alleviate how you are feeling right now, all I can do is send you a virtual (((hug))). Stay in faith that you and your baby will be well. Focus on the beautiful baby you are carrying and all the joy he/she will bring. This cancer thing is a blip on the radar - you are stronger than you could ever imagine and you WILL beat this. I am praying for you

ElaineTherese

Love all the pictures you've posted, ladies!

Welcome, lovelyleo. Boxofrockstars on my chemo board did chemo while pregnant. She gave birth to a healthy baby boy! Hope you have the same outcome.

Just got back from a trip to CT/MA to see family. Came home with a red bump on my back (think it's an insect bite or spider bite). Couldn't find a tick in there, which is good news, I guess. I've got upcoming appointments with my PCP and MO; if it doesn't go away, I'll mention it.

LTWJ

I have a question about a Herceptin. I have 2 more to go. I wear glasses and I know that my prescription has changed and I need new lenses. My husband thinks that the herceptin can change your eyes and he wants me to wait until I’m done to go to the eye dr. Doesn’t anyone know if this is true

coachvicky

LTWJ ... go to eye doc now, please. I had three lens changes while taking chemo including Herceptin.

Elaine ... please have that bite looked at soonest. Not to cause worry but a tick can burrow under the skin. I attended a "tick briefing" at NASA once and I am little paranoid about them. Also, have DH circle the bite with a Sharpie. That way you can tell if it is spreading or getting smaller.

Vicky

Tresjoli2

elaine if you were in MA ticks are awful here. I second coach about the sharpie and please mention to your doc...

ElaineTherese

Good idea, Vicky and Tres. I will go to minor emergency center today. I was in the southern Berkshires, Tres. My parents own a lake house in Tolland, MA.

JaBoo

hi everyone, can I check in here too? 🙂

I am healing from two surgeries (due to close margins) and anxiety is slowly starting to creep in as my meeting with MO is coming near (July 10th). I am making some notes to prepare, questions etc.

Ticks... they suck! got two on wednesday, one of the kids too. the kids sometimes have 2 or 3 ticks a day between themselves, the joy of country living.

Jstarling

JaBoo, agreed waiting just stinks. lovelyLeo, we’re all pulling for you. Can you feel the caring? Moody, looks like a great trip. Can’t wait to be at a place in my treatment when I can see the grand kiddos in person instead of justFaceTime. Hopefully a trip up to Massachusetts and Michigan can happen around Labor Day.

deni1661

Jaboo, welcome to our group. This is a wonderful community of caring, support and inspiration! Feel free to ask anything as we are all in different stages of the cancer journey and we love to help. Have faith your appointment on the 10th will provide the answers you are seeking and peace as you move forward. ((Hugs))

Elaine - It's wonderful that you were able to spend some time with your family at your parent's lake house! I agree, get that bug bite checked out. I got stung by a yellow jacket and had a moderate allergic reaction. No big deal, right? Well my PT told me to keep a close watch on it because having lymphedema puts me at high risk for infections so I guess a bug bite can be more serious than we expect. It took almost 2 weeks before the swelling and itching went away, way longer than any previous bee stings I've had. I hope your bump is nothing serious and goes away soon!

Taco1946

JaBoo and LovelyLeo - welcome. The waiting is very scary. I'm glad to read the mods notes that you have obs familiar with prenatal care and cancer, LovelyLeo. JaBoo - I wrote a long post a couple weeks ago when someone asked about first MO visit. I think if you put my name in you will find it. Take someone with you to take notes. We all hear things differently.

Taco1946

PhoenixCruiser

LT, yes I have read that Herceptin can affect your vision, Mine got worse too and I'm waiting a month or two after I finish to get an exam.

shelabela

lt, I had significant vision change on herceptin. It was horrible. And it has not changed back yet. Still a little blurry at times. My eye dr wants to wait another 3 months and change my prescription

JaBoo

Deni tkanx so much for the warm welcoming words

Taco thank you, I've tried searching your post with questions, but couldn't find it. never mind. I've made some notes and hopefully I get my answers on Tuesday

Photogirl, wow, I found your pictures from Slovenia when going through this thread backwards. You rock! I can't even say (engl. being my third language) how those pictures made me feel!! I love travelling and love mountains, the Alps and also Slovenia, have been there some years back mountain climbing and have the best memories.... Right now I feel like travelling and mountain climbing are a closed chapter for me... your pictures gave me hope... and your beautifull hair too. thank you so much for posting them.

Taco1946

JaBoo - go to "search" button on left of your screen. After you open that, put my name in. The post was June 18th or 19th. I looked after I wrote last night. On "taxol only" board. Once you have a treatment plan in place, it won't be as scary (which is not to say it isn't scary!) The HER2 really threw me for a loop. I went into MO's office thinking I was just getting started on the AI's instead of weeks of taxol and a year of herceptin. My final path report was very late due to the holidays and I had already finished rads so I was really blindsided. After Tuesday you will know what you are facing in terms of treatment and can make arrangements accordingly. I think all of us triple positive ladies get taxol and herceptin, but your MO may add additional chemo due to size, lymph node involvement etc.

I also experienced significant vision change with the taxol. I'm feeling like it's continued to deteriorate and that I need to get it checked again although it's been less than a year since my last exam.

Tresjoli2

my eye sight has gotten terrible only recently. I didnt notice much change during chemo or herceptin. But in April it was like bam! Blurry vision. I waited for it to go away, but seems here to stay. I made an eye appt in August to get it checked out.