Calling all TNs
Comments
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Dear Molliefish, I hope your friend finds all the help she needs to battle breast cancer.
Rebekah, you also have a young daughter who needs you. So I think you are making the right decision to put on your boxing gloves.
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hello ladies, here is an update, I will need thoughts on what to do...
The pet scan came back all clear! (YAY). The genetic testing came back all good except for the BARD 1 gene; they found a mutation. That's what my doctor said, she didn't say positive. So she told me there hasn't been much research done with this gene to say yes, it definately causes breast cancer. However she thinks in my case, it might have cause it since I am young with no family history. Does anyone have any info on this gene? i've done some reading on it but would like to see if you ladies have personal experience with it.
The ki67 is 60%, dont know if I mentioned this before or not. I have lymph node involvement and she wants to do a dissection as well. My doc wants to do surgery first, followed by chemo and radiation.
I have to decide on whether to go the lumpectomy or mastectomy (one or both breasts) route. She told me to consider whether I'd be ok with the worry and anxiety that comes with getting MRI's and mammograms every six months. Or I could just do double mastectomy to prevent this. She also said since I was so young, double mastectomy would be a better option.
I lean more towards the double mastectomy but I have my doubts and worries about this. I know that if I do this, I will opt for immediate reconstruction where they will put in tissue expanders since I would still require radiation. Then after I could either do a DIEP or implant reconstruction.
It's just overwhelming. My husband supports either choice I make but he also likes the piece of mind that comes with a double mastectomy.
What are your thoughts ladies? What would you do?
For those who have gone through this, what did you choose and are you happy with your decision? Should I consider anything else prior to making my choice?
I'm also going for a second opinion.
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Dear MakeupLover, I don't know if you already saw a plastic surgeon but the one I saw said that with the placement of expanders, there is 50% chance that the radiation will not work and 50% chance that it will. If it doesn't work, then it would be removed. Because of this and that I have such small breasts to begin with, I have decided to wait until I'm ready to do anything about reconstruction following the bilateral mastectomy - if at all. Plastic surgeon mentioned that nipple tattooing can be done. So if you have not seen a plastic surgeon yet, maybe you can seek that opinion as well.
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Heartdesire,
I meet with the plastic surgeon tomorrow, well later today lol. I'll ask about this, but I don't want to be going about my life flat chested, you know what i mean.
The only thing my doctor (breast surgeon) mentioned was that with radiation there might be a chance that my body will reject implants, if I chose them. That's why I leaned more towards DIEP.
I'll for sure ask her tomorrow about this. Thanks for your input!
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Hi everyone, I haven't been here for ages, and I've just been catching up. I'm sending my love and support to those newly diagnosed, as well and those of us further from treatment. I'm nearly 2 and a half years from diagnosis, and like most of us, I'm just trying to put BC further away in my rear vision mirror.
Hi Rebekah - great to hear about your pet scan, and good luck with your port. I had my first chemo without the port, and what a difference it makes with it. A positive one that is. It was quite sore for a few days, but it made is much easier in the long run for me.
Hi Make up lover - I was found to have the BRCA2 gene shortly after my diagnosis with no family history. I went for the double mastectomy with Diep and I'm so glad I did. I was 40 at the time.If you have any particular questions, just ask away. I'll keep an eye on here in case you have any.
Val - I'm so very sorry to hear of your friend. It's kind of you to think of all of us during this hard time for you.
Warrior - sorry to hear about Willow. Our pets can help us through so much, and ask for so little in return. I'm sure you will take great care of her, and make it as easy as possible.
Muck love to everyone x
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MakeupLover - great news on the scan! I opted for a lumpectomy, but my TN tumor wasn't discovered until the final pathology. I went back to the surgeon and asked if after chemo I should get a UX or a BMX and he said no. He did mention the monitoring, but said survival wise it made no difference. It's a very personal choice and so tough to make.
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Thinking of you Val.Sending you love and prayers.
Rhonda
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MakeupLover -
Sorry I have no advice re: reconstruction. I will be in the same position. But YAY for the Pet Scan. :-)
Rebekah
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MakeupLover- I am your age (just turned 32) and am having a bilateral mastectomy with immediate reconstruction the beginning of next month. I made this decision pretty early on, but wavered a little because I know the healing time for a lumpectomy would be much shorter and easier (I hate the idea of not being able to pick up my kids for a month). I don't have any gene mutations, but my surgeon still thought the more aggressive surgery was warranted due to my young age.. She said even without the gene mutation my risk of developing a new cancer over my lifetime is higher because I've already had one (and another surgeon told me having one would reduce my chance of getting a second cancer by as much as 95%). The NP at my oncologists office also said she would do the same thing (she is around our age) because long term she thinks it will reduce my anxiety about every lump or bump I feel in my breasts (mine are pretty lumpy). My husband will support whatever decision I make, but was very upfront and honest that he would rather I have the mastectomy. It is such a personal decision, but for me (who was always such a modest person before this) after being examined by 20+ doctors/nurses and the various tests which required me to undress in front of so many strangers, I have become totally unattached to these things and they are just a unnecessary body part at this point.. I do however still want the reconstruction so I look normal- after 2 kids they may even look better! If you really aren't sure, one thing to keep in mind is you could always have a mastectomy after you have the lumpectomy if you change your mind, but you can't undo a mastectomy if you did that first. Good luck with your decision!
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- so sorry about your friend Val.
I wanted to check in and ask for prayers. I had my endometrial biopsy and d&c surgery yesterday. I am doing ok as far as recovery but the doc said that the vaginal ultrasound that was done before showed a suspicious cyst on my left ovary. I actually read the report on my medical file online from my hospital and it read as possible neoplasm. The doc that did my surgery said he thought the original radiologist overread the results. I damn well hope sure. I am so nervous that it will be positive for ovarian cancer. The doc said I should get pathology results by fri. Either way he said possible hormone treatment and/or surgery. I'm really scared. I had a cat scan in March of my abdomen that was normal. And now just a few months later I have a large suspicious cyst on my ovary. Im not mentally ready to deal with a new cancer. This sucks. And I tested negative for gene testing when I was first dx 2 years ago. I can't think of having a full hysterectomy at 47. My mom had a partial heand developed issues with eliminating urine right after and had to catheritize herself daily to urinate. That is a fear for me also since I dealt with urinary hesitancy during my taxol treatment. Just can't think about more cancer now. Life is sometimes not fair. I have a huge 2 week trip to Amsterdam, Paris, & London booked and paid for that is in October. It was something I was looking forward to. Now as i am just past my 2 year mark since my reexcision I am facing another August surgery and a September where i may possibly be starting chemo. I'm just mad at cancer today. and thanks for listening.
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Shopgal
Please think positive about possibility of cyst being CA. I know it is so difficult NOT to "go there" after having cancer. I had two thyroid nodules biopsied just about a month ago and I was SURE it was cancer because one looked very suspicious via ultrasound....well, after MANY biopsies (5 in each nodule), both came back negative. I was walking around severely depressed because I was sure I had CA again. It is so tough until we get results. I am so sorry you are going through this.
I also realize that after such a scary experience such as breast cancer it is difficult to "trust our bodies" again. At least it is like this for me. Seems to me that CA could be the least likely given the fact that cysts show themselves all the time on ovaries. These radiologists have to call out each and every possibility and I am convinced with a cancer history they become even more anal- kind of like a CYA attitude.
I hope you get a call sooner rather than later and please share the GOOD NEWS with us when you do learn the results.
Janet
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thanks Janet. I'm trying hard not to panic. I so need my tn sisters to keep me calm and share their stories and experiences. I guess I'm just feeling that anxiety before biopsy results. Plus I feel so bloaty today post op.
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Thinking of you xx 😘 hang in there xx
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Dear Shopgal2 - it seems to be the radiologist's job to overread because of course the goal is not to miss anything. So try your best to sidetrack your mind and concentrate on your glorious trip! Until something definitive comes out, that trip is still on.
I truly admire you - I'm the one who can't even look at travel websites right now.
I'm cheering you on!!!
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ShopGal...stay positive. Sending prayers. Amsterdam, Paris and London are waiting for you‼️
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Shopgal, we are definitely here for you. It could very well be a cyst. I had a partial hysterectomy, kept my ovaries, before breast cancer. It wasn't too bad. Try to take cleansing breaths and dream about your trip. Let us know as soon as you get results.
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Shopgal-
I'm sure they are being extra cautious, which is really a good thing even if it's super stressful for you. Hang in there! I will think positive thoughts for you!
Rebekah
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hello again everyone
I had a wonderful consult with the plastic surgeon. She was super nice and understanding. She explained two options for reconstruction, pros and cons for both etc. Well after meeting with her I feel more confident in going down the double mastectomy with reconstruction route.
I still want a second opinion though and have an appt for that this coming Thursday. My surgery is already schedule for August 30, eeek! So I have to move fast. I have to let my job know as well lol.
Sam, I also thought long and hard about lumpectomy vs. mastectomy. Everything you said, my doctors said as well. I guess it makes sense to decrease your risk as much as possible or recurrence and double mastectomy offers that. I would hate to do a lumpectomy and then have a recurrence somewhere down the line, I do know that nothing is guaranteed and even with a mastectomy cancer can come back. Lets hope not!! I wish you the very best for your surgery! Please keep us posted.
Rebekah, yes I'm so happy the pet scan was clear!! how are things going with you?? what are your next steps, I think you are doing chemo first?
Shopgal, I will keep you in my thoughts!! Enjoy your trip
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MakeupLover-
Good news that the PS was able to help you feel more confident about your surgery decisions. I am doing chemo first so have time to think about that. What will you do for Recon?
I am going in for port placement today. I know so many of the ladies here have done it and said it wasn't horrible, but I'm pretty scared. Im going by myself and husband will pick me up after. Now thinking maybe I should have found someone to come with me. I hate disrupting anyone's schedules though... people have to work etc... Something to consider for when I do have surgery though. I tend to always think I will be fine on my own, but sometimes we do need help.
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rdeesides the port surgery wasn't bad. Just sore after. Ice and Tylenol helped.
Thanks everyone for the encouragement. I esp needed it today. It definitely was a Xanax day. I just need to stop my racing thoughts. Plus I'm just extra crampytoday.
Makeup lover sounds like you have come to peace with your decision. Always go with your gut. Most of us have had second thoughts on our decisions but you make the best decision with the info you have at the time. Do not look back and second guess. That just is not good. Trust me on this. And a second opinion will settle your mind.
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Thinking of you, Shopgal and rooting for you BIG TIME.
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Hey Shopgal. Rooting for you. I so feel you about it not being fair, and the fear of a hysterectomy which causes it's own problems.
My vaginal u/s in Feb 2017 showed a cyst on my left ovary. After the radiologist looked again and my MO they said it will correct itself or stay the same, as I'm post menopause. I was told by 3 different dr's that a cyst is different from a mass or growth on the ovary. I've had them in the past and they have disappeared. The worst one was when they did a biopsy and it burst. I was in pain for weeks.
I've had a stomach ct, pet etc. It's easier said than done not to , but don't borrow tomorrow's anxiety today. With this beast of a disease, so many things come up, that if we had not had this dx, I feel would be handled differently.
Thanks everyone for your kind thoughts about losing my friend. Devastated does not begin to explain my feelings.
For those contemplating lumpectomy vs masectomy, you have to get your info, opinions and then be comfortable in your decision. We are all so different, our worries, concerns etc. I can say that radiation has almost made it impossible for me to consider recon at this time. My skin is so damaged. Good thing I knew this going in.
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Has anyone heard anything at all about our friend Annie? (Cocker Spaniel)
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Rebekah- hope the port placement went well for you today. I managed to get a really nice nurse to get my chemo start date moved to tomorrow, which is when I'll get my port putin. Isn't it crazy to want to start chemotherapy? Sad we are here, but I'm always impressed by the strength of the women here.
Hang in there ladies!
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VL22 - I never thought I would say I was excited to start chemo, but here we are and I am ready and eager! I just want this all to be over! FYI when you do yours it isreally not at all bad. I had more anxiety than I needed to havePort insertion was perfectly fine. A little sore in my neck. Hopefully that doesn't last too long. No pain where the port is inserted.
There was a small hiccup with my heart during surgery. I think they said it was palpitating. They said it happens sometimes. Cardiologist came and checked me out and they did a chest xray and said all is fine now.
So far, so good. Just want to keep taking steps forward! Let's bring onchemo!!!
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Dear Rebekah, I hope the chemo sessions will go very smoothly for you.
VL22, good luck with the port placement and chemo tomorrow.
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Rebekah, glad your port placement went well!
Keep us posted on your chemo
Hope everyone else is having a good day!
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@ALHusband: I was just thinking about her this morning. I truly hope she's ok. Has anyone messaged her daughter?
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Port placement went well - Sitting inchair waiting for infusion. Eating a very good donut!
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VL22 -Yay! Two big steps! Hope chemo goes smoothly
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