CALLING ALL STAGE I SISTERS
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Northern Girl, I noticed that you are a Triple positive. Seyla is as well, she'd be a good one to ask questions. And it sounds as if you are both well endowed women as well, if that falls into the questioning more!
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Seyla -
Sure hope you are on the mend! So sorry to hear about your fall. I feel for you. I did the very same thing the day after my power port was put in and landed completely face down and on the port! God, I will never forget it. I think I was more embarrassed than anything else as people came running to help me up and then began to stare at the "doorbell" like appliance on my upper chest that I landed on. I tripped over a speed bump in my parking garage (like an idiot) - fortunately, my pride was more injured than my body and port turned out to be undamaged.
I hope you stay upright from now on!
Linda
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Thanks Linda...I was also more embarrassed than anything else. I didn't go out since Wednesday.
Probably when they saw the port they thought you were an alien. LOL
People used to stare at my port with fear.
Imagine if i fall again. hahahahahaa
Sheila
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Red Barb congrats on having only one more txt to go!!!
Sheila... Pleeez don't fall again!!!
LOL! Otherwise I hope everyone is having a great weekend. I had worked all day yesterday and been up since 5 a.m. and got that wonderful call at 8:15 p.m. last evening that we had a call off, of course no one else wanted to work and being that I was on call I had to go in and work third shift. That said I ended up being up for 26 hours straight with not sleep before I got home and went to bed. Exhausted wasn't the word for it. Then after I went to bed... 2 more phone calls from work about nothing important!!! What is wrong with people?!!! Sorry I don't mean to rant about work it's really not the place but I needed to get that off my chest I guess. Thanks for listening ladies.
Renee
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Renee, rant on about any and every thing. It is all BC related because stress affects our health. Enjoy the rest of the weekend and hopefully they will figure out what to do without calling you again.
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Renee...There are no rules here. Rant as much as you want.
I hope you get a peaceful day tomorrow. When is your next day off?
Today they sent the official letter about my mammogram. so thats out my way.
Monday is a different story, so far Im okay with the idea that its that time to see the Oncologist again.
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Renee: rant all you want!! Next time you work like that, which hopefully won't happen, when you get home take your phone off the hook so they can't reach you for the unimportant stuff! enjoy the rest of the weekend and get some rest! 0
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Hi Seyla: looks like we are both ER/PR and Her2 positive
I am on Fec 100 followed by Docataxel and then Herceptin. The chemo treatments will go on for a year. While I am not looking forward to another surgery, the port sounds like a great idea. I had my 2nd chemo yesterday and they had so much trouble finding a good vein. The port will solve that.
Since I have DD+ breasts. it worked well to have a lumpectomy and then re-excision. I still have positive margins. Emotionally I don't know how many more surgeries I can put up with. Gotta decide: another excision with chance of more positive margins, or total mastectomy???
I am surprised how many girls on this thread had just Stage 0 or Stage 1 and low grade and had a mastectomies. I am just Stage 1 with IDC that is high grade, but during the surgeies, they found large DCIS which doesn't show up in ultrasound or MRI... it was identified in the pathology of the tissue sample. Maybe there are other factors to determine which treatment option to pursue?
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HINorthernGirl....I believe there are other factors like family history, your age....
I had different chemo regimen also 4 A/C every 2 weeks follow by 4 Taxol every 2 weeks which Herceptin was introduced to me with the first Taxol and once a week for a year. Now I'm reading in some cases they are giving Herceptin every 3 weeks with a stronger dose.
Are you having radiation after?
Again I'm glad you are getting the port.
Feel free to ask any questions you might have. I believe its only 3 of us in this thread DX triple+
Sheila
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Hi Sheila
I think I am only getting radiation if I go for another excision. If I go for the mastectomy, then the radiation may not be necessary
I wonder if treatment options also vary depending on the country and hospital you are
Did you have radiation as well as chemo?
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Hi NorthernGirl!
I had to have a re-excision a few weeks ago that showed another 1 mm of multifocal IDC. I think there are still small multifoci left in there, thus I am opting for a mastectomy. My breasts are dense to begin with and I did not have a palpable lump. I had a newborn that refused to nurse on that side - which was my blessing in disguise. I actually wish I would have done the mastectomy instead of the re-excision but my BS said it was not necessary at the time and three BS's talked me out of a mastectomy when I was diagnosed. But now that there is more cancer they recommend a mastectomy (I've gotten a few other opinions as well). I'm fine with that - I did not want to do radiation to begin with. I am choosing a bilateral - I have two very small children, my breasts are too dense, I do not want to live in fear, and my BRCA results were inconclusive. I have a strong family history on my dad's side - I believe I would be BRCA 3,4,5,or 6 once more research happens down the road. Everyone chooses their treatment based on their personal history. I will also be doing chemo - does my Oncotype warrant it? No - but the Oncotype research is for 10 years. I need 40-50 years. I want to watch my children grow up, and watch my grandkids be born and need to know I did everything I could at the time to make that happen. That is what my treatment decision is based on.
So - I guess for most of us, treatment decisions vary by individual.
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Hi In_cognito
My heart goes out to you and to all girls who are dealing with BC with very young children. I hope you have lots of help. I can't imagine how you manage to get the rest you need with babies to tend to.
When do you go for your mastectomy? Are you getting reconstruction?
When I was diagnosed, I kept thinking how "lucky" I am that I got it at this stage of my life. I am not much older than you but my kids are older. Two are away at university and only home for the summer, one is still in high school. they have been an enormous help to me.
Best wishes
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In-cognito - sounds a lot like my road... I actually put my objectives and priorities with respect to treatment options in writing and was really glad to have that to refer to later when I started second-guessing myself. When they found the "bonus" tumor I realized that I would always be walking around wondering if there was a tumor that didn't show up. My kids are teenagers but I still need to be here for them and not spending all my energy worrying about recurrence. I was also concerned about radiation based on the location of the tumor, as well as complications with respect to reconstruction after radiation. So, yes, the decision is a very personal one that should address your needs, both physically and emotionally.
Good luck to you.
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In=cognito: My heart goes out to you. I dont' knwo how you are doing all this with such young kids. My thoughts and prayers are with you as you go forward with your surgery. Remember it's your body and your decision is your decision. As long as you believe in the decision you made then it is the right decision for you.
Barb
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NorthernGirl - I am hoping to have surgery on 7/16 - originally it was 7/22 or 7/29 but they just called and found a spot for me on the 16th - hope it works out that way. I am planning on reconstruction - I am doing TE's. Unfortunately, I am unable to do the other reconstruction options. I just do not have the recovery time or help available with two little ones right now. I figure if I have to have my implants replaced 10-15 years from now - I can either opt to have them removed completely, or choose another reconstruction option at that time since my kids will be older.
Astorm - What a good idea - I think I will put my objectives down in writing just like you. I am at peace with my decision. However last night I just started thinking about the surgery and how I really do not want to do this at all (the whole breast cancer thing) - but unfortunately, I have no choice. My moods have been pretty stable with these two little beautiful girls to keep me busy. But late at night before I go to bed I think about how much this disease just sucks.
Redbarb - The little ones keep me very busy and pre-occupied!
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In-cognito - I didn't meet my PS until the evening before surgery -BIG mistake. The consult took 2 hours but consisted mostly of her talking about her personal experience with bc. She didn't take any photos or measurements and we didn't discuss the type or size of implants. I just felt that I had made a big decision and that I didn't want to think about the implants until later. I didn't ask PS about her availability (which was nill after I got the TEs and was shuffled off to her assistant). I encourage you to ask lots of questions -- it is the only way to find out if you can get what you want. My 2nd PS met with me 2 days before the exchange to discuss size but I then learned that he would only do saline. Again I just went with it and now I am researching options for a revision. Also, make sure your PS can be there for you.0
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In-cognito.....Im glad they found a spot for you for an earlier date.
I wish you were in NY, I would volunteer my time to you.
Its difficult with 2 very young children. But you will come out from this misery and find your normalcy again. Do you have any friends or family close by?
Hugs
Sheila
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AStorm - I actually have a new PS - I met with one when I was originally diagnosed but am now opting to go with someone that I know. I'm a nurse and picked a plastic surgeon that is highly regarded at my hospital. I just have to keep my mind focused on his "reconstruction" work/pictures. He has done "augmentations" on several nurses that I work with and that will be quite different than what I am going through. I have a long list of questions for him! I'm surprised that the PS you met with wanted to do saline - I thought that was rare!
Shiela - Aww thanks so much for offering your time - too bad we all didnt live near each other! Can you imagine! Family wise - we really do not have a lot of family nearby. My mom is close by - but she is 75 and takes care of my dad that is wheelchair bound and had a stroke 3 years ago. My brother and SIL live about 4 hours away and I am hoping that they can help a few days during the first week - but they had a summer vacation planned and I do not want them to cancel their plans for me. I have a lot of friends that really want to help - they all have little ones to deal with too so I am taking whatever help I can get. Hubby's family is all on the east coast and unfortunately, they are unwilling to help. They pretty much buried their heads in the sand - can't figure out why. Maybe because they are too scared to think that this can happen to them. They just act like the diagnosis does not exist. Oh well. The one thing about this is you sure do figure out who your friends are!
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I had my follow up today. Now I wait for the TM result.
This is the first time I didn't leave the house with full of anxiety.
And also its the first time I know I'm okay. (Before the results)
Also I have been told they can use either arm for blood and BP.
My Oncologist who I really like rushed me today.
And he still wants to see me every 4 months. I don't know why after 5 years maybe he is not aware of the time passed. I was all ready to hear see you next year and already had an answer 'can you see me every 6 months' but I didn't have to say anything, like I said I was rushed.
Thank You Sisters for been here for each other.
Hugs........
Sheila
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The Fall Update.
Left eye has the most beautiful shades of purple all around it.
Face has memories from last week. But its no longer raw skin and burning.
My ribs dont hurt.
My ankle is much better but still needs more time to heal.
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Shiela: I'm glad your healing is moving along.
In-Conito: Just make sure you take your friends up on every offer. Just because they have young ones doesn't mean they can't help. I made the mistake of not taking people up on there offers to help and now I'm regretting it alittle. When they were asking I was feeling ok. Now that it has gotten a little tougher I feel embarressed to ask for help. Don't hesitate to ask them to take the kids for a few hours just so that you can have a little break to rest. If you were further north I would ask my cousins to come down and help you since they are too far away to help me.
Have a great Tuesday everyone
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Hi Ladies!
I replied yesterday with a long post and then accidentially deleted it...sigh...but I will just say that i am doing great! Feel free to PM me with any questions.
I am so grateful to have this resource...THANK YOU BREASTCANCER.ORG!
Tomorrow I am three weeks post Bi Lat Mx with SNB and DIEP. I get my drain out (#3/4) and my pain level is much much better. I did start driving yesterday and walk an hour a day. I do light chores and love my new body! I had quite a bit of fat to use around the hips
. My breast skin sensation is so much more than I expected pre op and the recovery was very doable with my husband taking off two weeks from the date of surgery! I don't have my nipples but most of my skin was spared and I am actually perkier now and bigger than I expected! I may still be swollen or I might seek a bit of a reduction at the time of stage two. They keep saying that "this and that will change in the revision surgery". *****The biggest piece of advice is to do your research! I wanted the sensation in my breasts and feared the pain of implants, not to mention that they need to be replaced down the line... In a matter of two short months, I had to learn so much! I was going to have expanders put in at another hospital to "hold the pocket for a later DIEP" but thank God I did another opinion (actually three BS/PS/Hospitals opinions), allowing me to get an immediate DIEP...less surgeries, and time and insurance coverage! Every hospital did things a bit different....PM me for details
. I will post pics to the Tim Tam site soon. BEST of LUCK TO ALL of you ! More later... MRDRN
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Sheila,
I'm so glad your onc visit was not as stressful today as it has been in the past. Glad to hear you are recovering from your fall, slowly but surely. You must be a pretty sight.
MRDRN ~ Very happy you are happy with your recovery so far.
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Oh In_Cognito, I wish I could help you out too, but I am about 4-5 hours away. DH and I are great baby-rockers, and love to help out friends. Do accept any help from your friends and family that are offered if you can. I found that if I turned someone's help down (for something I could do myself), they didn't offer again. As a single mom I did so much for myself because I didn't have a lot of people around to help. I look back and wish I had taken people up on help, I think I could have recovered faster.
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Yes, take those offers, from where-ever they come from. I made the mistake of needing to be a "strong" example and consequently the offers of help dropped off fairly quickly when I didn't take people up on them.
On another note: I played ultimate frisbee for the 1st time yesterday. Again, being the "strong" example. Wish I'd get over myself. I have a bum ankle and it's really bummed with me today!
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Especially if someone wants to cook for you. Accept it.
Real friends and family don't expect anything in return.
I was there years ago for completely different reasons. My DH decided to live me with a 3 year ol and a 7 weeks old. I tried to do everything myself of course I was only 29 and had more energy.
I wish i accepted some help instead of taking 2 little girls to shopping on a snow storm with a stroller and shopping card.
Sorry I carried away. I'm really sorry this is not about me.
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My big issue was that I was hiding my BC because I was going through a divorce and I didn't want EXDH to use it against me to get my children. So I didn't tell many people what I was going through and those I did I swore to secrecy. Of all people, it was a "friend" who was a lawyer who spilled the beans. You'd think he would have known better. It did work for many months.
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Seyla -
I am sending you a ton of pop-corn - when you get it - pour it in huge refrigerator size box - then have someone lift and gently insert you into same. Remain there until you are healed!
Linda
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Linda...UPS just delivered the pop corn.
You are funny. I really appreciate your thinking of me.
Have a wonderful day.
((((Hugs))))
Good Morning All
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granny.....Ill be thinking about you tomorrow.
Sheila
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