Just diagnosed, how long until ny life has some normalcy again?
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Hello everyone.
I was wondering, for those who only had cancer in one breast and was not at "high risk" due to family history or genetic predisposition, did you choose to get bilateral mastectomy anyway, and if so, what were your deciding factors?
My cancer is only in one breast, and I considered bilateral mastectomy as preventive measure. However, my family members seem to wish I would choose to be more conservative and have a mastectomy only in the affected breast, especially because the statisic shown by the doctor seems to convince them that it's worth taking a chance if there is only around 5-10% increase in the chance of getting it on the other breast in the future (meaning 90-95% chance that I wont). That's a pretty good enough odd for me to decide on keep the other breast, I suppose, but I'm still not sure what to do.
I'm in my early 40's and pre-manopausal, so I wonder if that should play a factor in my decision to remove my non-affected breast or not. However, I'm personally not concerned about the physical outcome either way (one missing or both missing), as will have reconstructive surgery either way.
My BS says she does not want to influence me one way or another, so the decision is being left up to me entirely. How did all of you decide on doing just one mastectomy or getting bilateral mastectomy when only one breast was affected and the other one received an "all clear" diagnosis? Peace of mind is a good reason, but did anyone actually get recommended by the doctor to do a bilateral, or was it all up to your own decision making?
Thank you in advance, and my best wishes to everyone in here!
Jamie
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Jamie, my surgeon told me I make the right choice - after my surgery! They found atypical hyperplasia and microcalcifications on my "good" breast which is like staging for cancer.
This way I had one surgery.
Be at peace with whatever you decide. It is your body. Not your family's.
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Barbe1958m
Thank you for your quick response. Yes, you are right - my decision will be the right decion regardless of my familys input. I'm glad to hear that you made the right decision as it turned out. Did you initially choose removing both for preventitive measure? Did you also need further therapy/treatment afterward?
I hope you're doing well! Thanks again.
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Samiam40,
I completely understand the unanswered questions regarding time frame amongst many other questions we are all facing when you initially get diagnosed.
I meet with my plastic surgeon in few days as well, but I know that not much can be answered until the surgery is done and they examine the entire situation before I am told the course of treatment and how long the whole thing would take. We all probably had better plans for this year, so it is frustrating to have to pause everything, but we need to make getting better our first priority. I'm in the same boat. Good luck, and keep smiling. Humor has helped me out a lot up until now!
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Jamie, I always said that as soon as "carcinoma" and my "breast" were in the same sentence I would get a double mast. This was my 4th lumpectomy over the years and I have never, ever had a mammo that I wasn't called back on. For a long time I just waited for the other shoe to fall, so when it did, I caught it!
I don't have to worry about being lopsided or wearing foobies or reconstruction. I'm sure the arthritis in my back and neck will appreciate the easing of the load.
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Donna ~ To answer your question, yes, I had chemo, although I did not take to the idea of it quickly. I have always believed in natural healing (homeopathic meds, food therapies, etc.), so I'm one of those women who literally researched ad nauseum, trying to find information to prove that I would be as good without chemo -- which, by the way, I never did find. But in the end, it was long term bc survivor friends who convinced me that I would never want to wake up with a recurrence and think I should have done more. Also, my PS's wonderful Surgical Coordinator assured me from all the women she'd dealt with who had been in my position, that a few weeks was a small price to pay for a lifetime of peace of mind. Not that we'll ever have total peace of mind about our bc not coming back, but just the peace of mind that we did all that our doctors advised us to do -- all that we could -- to prevent that. And that's the same reason I opted for rads -- because I would never want to be in the position of wondering if it might have made a difference. And I made a decision to use all my holistic knowledge in a complementary fashion, to minimize damage and work on fast rebuilding.
The other thought I might add is that I had the benefit of a medical team I knew was the best anywhere, and also had my best interests at heart. So, although my mind fought the idea of poisoning my body with chemicals, in my heart I knew it was the wise thing to do because of their expertise, which far out trumped mine.
I did 4 cycles of Taxotere & Cytoxin, but I would assume from your stats you will need something else. Hope this helps, and feel free to PM me if you have any more specific questions about chemo or anything else.
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THANKS DEANNA!!! Yes once I get more of the info I will be back in touch as my anixety is very high. I TOO am a holisitic and wellness type person and that is why it is hard to imagine the posion part BUT it is all necessary to do NOW and with all I have. I will ask later how you used your holistic knowledge and rebuidling the immune system during the treatment etc?!
The problem is my onocologist is the BEST in this field but it is defintiely not the warm and fuzzy kind AT ALL!!My P.S. AIDE is great and trust her.. told me she is the best and to grin and bear it as I will receive the warm and fuzzy from her staff etc. Everyone says you should feel comfortable with your Onocologist and in my heart, i want the skill and expertise!!!!That is what is hard for me, but know she knows this breast cancer field and is known country wide.This is the best place and that they all want the best for me.
Right now it is all about healing and keeping my anixety down.The next phase will come as it is meant. THANK YOU Deanna. and SENDING BIG HUGS!!!!
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I like how Lisa put it, "a new normal."
It's too soon to tell for you what treatments will be required and how you will respond to them. I had a bilateral mastectomy and ended up having to get all the different treatments anyway. When I complete radiation, it will be almost eight months. If I didn't have to have radiation, it would have been six months.
However, no aspect of the treatment has been as bad as I thought, I was fortunate to be able to work full-time throughout. So in that sense, my life has been pretty normal all along. I took off two weeks for the mastectomy and three days for the reconstruction. For chemo, I just took off the days I went for treatment. I also ended up going to physical therapy several times to learn ways to avoid lymphedema because I had a lot of lymph nodes removed. There can also be psychological issues to deal with.
I think you're smart to want to tell you children what to expect. From what I've read here, some women have made the ordeal a learning experience for them and their family rather than just view it as a horrible inconvenience. I mean, we all face some kind of adversity in life, and your children will be watching you to see how you deal with it. It's a powerful message to show that life goes on even when we are scared and have to deal with things we would rather not. Maybe you could even find ways for them to help, like after you come home from surgery.
Good luck!
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Donna ~ Something that helped me immensely with my fear of surgery and then chemo were guided imagery CD's. I've posted info about them elsewhere, but every time I do, I always feel that someone may think I'm trying to sell them, which I'm not. I just happened to get the one for surgery as a gift from a SIL, who'd had great results with it, and it was so helpful to me, that when the time came to face chemo, I bought that one (actually downloaded it to an MP3 player). They're a combination of guided images, affirmations and music that put the experience you're facing in a much more positive light. For example, the chemo one talks about a bubbling spring of healing liquid. As I said, I have already mentioned them on a couple of other threads I've been on because I'm such a believer, but am afraid of sounding like I'm selling something. If you want more info, just PM me for it.
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Deanna.. Could you send me a test note from the Private mesaage box as I cannot seem to get your address in the TO Box!!!! I can then respond to you and start the process!!!Sorry for the confusion~~!!!
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ReKoz - You're right...this is the place for understanding. And the venting! It's hard to do that with friends and family 'cuz you don't want to worry them any more than they already are, but sometimes, we just need to cyber scream here.
And to that end I'm going to say ...damn, I'm aching all over today and not happy! Yes, I know it's a minor SE and yes, it will get better as the day goes on, but, ouch!
I think it is because I was at a two-day conference and all we did was sit (and eat). You would think just sitting would be great, but we must seize up like an old engine. It feels like I'm down a few quarts of oil!
Happy February 1st! Even in northern NY State, I know spring can't be too far behind! Hugs to all.
Susan
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Susan-Where upstate do you live? I see your town name but haven't a clue where it is. Guessing if you write upstate, it must be really up there in cold country? Thanks for letting me vent and understanding it as everyone here does. I also think that most of my se's could be more severe. Actually, I know it from reading the boards but like you, I still feel awful sometimes. I just finished up my first round on Friday (I'm a 3 week on 1 off X4 person) and can't wait to get thru the next few days. Seems the day after is good as the past 2 Sat.'s have had me feeling almost "normal." Then I think the anti nausea shot and pepcid drip wears off and I go progressively down hill with stomach issues. Last week Tues. was the worst and then up again. I'm looking forward to a full week of UP!
Donna- How are you doing emotionally? Unlike the rest of the healthy world, I ask that in the spirit that bc has bestowed upon us. In other words, I surely know you are not doing a happy dance or even what might have been pre-diagnosis tough emotionally. Know that I'm thinking about you. How far from Chicago are you?
Off to do some laundry before the BLECH gets any worse.
Best to all
Ellen
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Oh Ellen.... my emotions are up and down and when the anxiety hits, it is so bad! Number one, I just had surgery 1-20 and am healing from that and HAVE to focus on that!!! Getting stronger every day and slowly getting better range of motion.Still sleeping on a very comfy recliner in bedroom.Have three of the 4 drains still in.
What is hard to digest, is that after all of this, chemo is now part of my journey! That news came so quick after my surgery . 10 days and this oncologist was not the warm and fuzzy kind BUT she is the best in the field.
Hearing all that you have said and others on chemo, reading up on it, it scares me.But it is a different experience for each of us and who knows how it will go until i am doin it!!! One thing is I need to make an appt for a intergrated medicine group that can also be part of this process at Rush medical Center. I am about 30-40 min.'s from Chicago. BTW... i grew up in Peekskill,NY and see you are from NY!
Night time is really hard for some reason. I am taking a Ambien CR each night. Have no idea if that will be harmful long term, but i need something!!For right now, i am ok and keep focusing on healing ,as the chemo would not start until after this recovery!THANKS ELLEN!! Oh I am doin laundry..better and better!!!!!LOLOL...... Hugs!
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Barbe... Thanks for writing such real feelings as I agree with all of whatever you say in any post!!! Having this surgery was the BEST decision and know that. The next phase however of having chemo is the shocker and will hopefully realize someday that it is all part of doin ALL that you can do NOW to beat the odds!!!! Hugs!
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Honestly, you may be dealing with the treatment for about a year...
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Donna ~ You grew up in Peekskill? What a small world. I grew up in Pawling!
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Deanna.. That is truly unbeleivable!!!No wonder why we connect..we got that East Coast thing goin..lolol. Certainly love the way you think and handle it all!!!!Pawling was not far at all!!!!!
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REKoz - I'm close to Lake George. About an hour from Albany. Where are you?
It would be neat if we could all get together when the weather's better!!
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WOW ladies!! It's destiny!
Susan- I went to Siena a looo-nnng time ago. Met my ex there but ended up coming "home" and completing college at Adelphi University. I LOVE Lake George! You are so very fortunate to have such beautiful surroundings as a constant reminder of the wonder of life! I'm pretty far east on the Island. By Stony Brook if you know it. There's a SUNY here and I just happen to work there. I'd definitely be willing to make a half way meeting with you in the spring. Watch out, maybe an all the way trip in the summer
. Teasing ya! Wouldn't want you to think I'm a stalker!Donna and Diana-I know the Peekskill-Pawling area fairly well. Many relatives living up there in Carmel, Brewster and Danbury. My brother-in-law got married in that beautiful white church that stands on a hill in Pawling. Hoping you remember the name because I don't! My sister also lives in the Chicago area (Northfield) Donna as does my best friend from when I lived in Pittsburgh (Naperville -Aurora.) My SO's sister now lives in North Barrington but they are on their way to moving to Houston. Love Chi-town and have been there often. Especially when I lived in Minneapolis and it was a short 7 hour ride.
I apologize Barbe, I haven't had the pleasure of traveling to your area of Canada. Did go on a cruise to Nova Scotia and uhm, is it St. Charles where the Bay of Funde is? Canada is most definitely on my Bucket List with Vancover and Banff at the top of the list.
Time to get back to the Super Bowl ladies. Routing for my 7 year home away from home of Pittsburgh. Though, I am happy to have settled back here if I couldn't live in my ultimate choice city of San Diego!
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REKoz ~ It's Christ Church on Quaker Hill. My brother was also married there! And, Susan, I'm not familiar with the town of Warrensburg, but I went to school in Saratoga Springs (Skidmore), which I'm guessing must be fairly close to where you are. And the SIL who gave me the surgery CD I mentioned above got her law degree at Albany and was also married at the church on Quaker Hill. And REKoz, my sister got her undergrad degree @ Stony Brook. How ironic (and nice) that we should all meet here. It reminds me of that six degrees thing....
Okay... back to the game...
Editing.... to say that I didn't mean it was "nice" that any of us are here! I just meant it was nice to discover a connection beyond bc!
Deanna dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-
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Donna, thank you for your validation of my "thoughts". Not all women appreciate how deep I dig to post here. (present company excepted...see DCIS thread!)
RekOz, I think maybe you're thinking the St. Lawrence. But I've been probably through as much of the US as Canada so my geography is about as bad for either one! My sister has lived in various states for the past 30 years so I've seen a bunch of them. We have a beautiful North America together...
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Just want to echo what Samiam's ps said - at least for me, it really was a year. I was dx over Christmas 2007 and had my bilat mx (one side prophy) with full AND on 1/31/08 - just a year ago. I've been through chemo and a DIEP flap recon in October.
But a year later, I'm finally finally feeling so much better! I'm back to working out 5 days a week, doing Pilates, weight training, and and back to being able to do a half an hour on the elliptical. DH and I love to hike, and a few weeks ago we did a 3 mile mountain hike - not as much as we used to do, but I'm getting there. I'm the same person who, in the middle of chemo, could not walk from my living room to my kitchen without being completely exhausted, and I have a small house!
And my hair is even growing back back, and it's thick and curly and really pretty.
When I was first dx and we figured out my treatment plan, dh and I both agreed that 2008 would just be a lost year, and we were right. But it's doable. You'll find strength you never knew you had, including the strength to accept help and support from others. You'll come out on the other side changed physically, mentally, and emotionally, but you'll be stronger for it.
Don't spend time mourning the lost year - it is what it is. Just keep putting one foot in front of the other and get through it. Although it may not seem at times like there's an end to it, there is, and you will get there.
Good luck to all you ladies - Sisters in Pink rock!
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REKoz - I'm about 1/2 hour from Saratoga - my daughter danced at Skidmore many times when she was in high school. Stayed there summers with NYSSA (State performing group). Actually, we both took weekend dance classes there for years.
I'd love to meet up this summer!!! Too cool!
Susan
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REKoz ~ Beautiful avatar! And so nice to have a face to connect with a (screen) name!
Natsfan ~ Wise and inspiring thoughts! You have a wonderful attitude, and your post beautifully capsulized much about the bc journey.
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Thanks NatsFan.. your expereince and what you say gives me hope and others too! I just am two weeks into healing from a bil. mx and recon and obviously in the healing stage. I also will be having chemo and that just is a process that is scary to me. I am learning it is all different for everyone, but you are right , we all pull out the STRENGTH and it is all there !!!
Taking help is being done and never thought THAT would be possible!!! Meals coming, cards, calls.. it is just overwhelming. BUT, after this is all done, when I am where you are, I will be helping others again!
Thanks for letting me and others know as all of you have here.. there is an end to all of this and life will come back. Hugs!!!
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REKoz... Checking in on you and HOPE all is goin ok?!! Praying you are gettin thru this and know you are not alone!!
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Good to hear from you again Donna. And Deanna? Are you still with us? Can't let our commonality go by the wayside now can we?
I am doing OK. Actually, the past week has been great because it was my off chemo week. If you remember, I am on a 3 week on, 1 week off x 4 protocol. It's suppose to be easier and allow me to be in better shape to work. Not too sure about that though. My first round had me feeling God awful on Mon. and Tues. and just plain awful Sun and Wed. Sat and Wed. are decent. This stuff is beating the hell outta my stomach and I have a big problem with "internal disorder" as my DSO calls it. I start back up tomorrow which is why I am getting bummed. I'm also beginning to shed so it puts me in another one of those unknown zones. Should I go for the buzz now? Or, maybe my hair will just thin alot (Dr. says it's possible on Abraxane and this protocol- esp. since I have real thick hair) so I shouldn't just jump into the buzz. I am picking up my wig today and have every intention of wearing it no matter the condition of my hair. Since I can't color it, I am WAYY to vain (and too damn young!) to be walking around as gray as I really am. Ugh. I really don't like this one bit!
How is your recovery going and when do you see the Oncologist?
XO Ellen
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Donna, Ellen ~ So good to see your posts and to know that you are both hanging in there! And nice to see your beautiful avatar, Donna. I was extremely busy for a week with my sister visiting from the East. We tried to be outside, hiking a lot, in spite of some unusually rainy weather here.
Yesterday was my last rads tx. What a relief to be done with that, as well as finally done with the active part of my tx!
Donna ~ I am so glad that you're getting lots of help. Are all of your drains out yet?
Ellen ~ I'm so sorry the chemo has hit you so hard. Which regimen are you on? I'm sure you've been told that not each round is always the same. You may actually breeze through one or more of them. It's just impossible to predict. As I recall, tx #2 was much easier for me than #1. As far as the buzz goes, I think you'll know if and when you're ready to do it. I resisted buzzing at first, but then mine thinned so much, it looked ridiculously straggly. It reminded me of a bag lady, and buzzing suddenly seemed like it would be an improvement. And I hear ya on the gray! I'm dealing with an inch or so of steel gray now. Everyone assures me I look great with 1" hair (yeah, probably after no hair, it's a huge improvement!) -- but I'm still wearing my wig or baseball cap to hide the "mature" color.
Well, good luck with tx #2, and be sure to tell your onc about the tummy issues. If he doesn't give you something, I'm sure there are other chemo threads here with helpful suggestions.
Hugs to you both and to everyone else here ~
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Hi Deanna and Ellen!!!!
Deanna.. I am so glad yo are at the end of the rads treatment.!! Glad you also had some fun with your sister! BTW, my hubby bought me a Nano IPOD for the upcoming treatments and is tapin all my music. I did not order the Chemo Tapes as it is more than i want to spend! Will see. YES..all drains are out as of Monday and sleeping in a bed.!
ELLEN.. heartfully listening to what you are goin thru with the treatment as this could be me soon enough. I do not know my protocol yet as I will be talking to my onocologist office on Monday. But, I am just on three weeks of post op and am not strong enough yet for chemo, mentally or physically.
The hair thing, totally think if it was me and will be, I will want a wig and be prepared. I have thick hair too and if it looks straggily like Deanna says she did, do what you think you can live with. Plus,, ME too on the vain part!!!! I color my hair too.!The wig will help so much!!!!!!This is so darn challenging and feel for you. All i know is, i will have a 9 week program with 4 treatments. Sounds like your protocol?
Thanks you both for being here!!!Sending a group hug as we are all in this together. All the best to everyone here as well!!!
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Ho Ladies-
I'm back after round one of three, cycle 2 (of 4.) I am on a different protocol that just about anyone else I have seen here. I'm on Abraxane which is the same as taxotere but does not require steroids because it has a "natural absorption quality" unlike taxotere. From all that I've read, that's a good thing because the steroids seem to cause more problems then the chemo. Abraxane is only approved for mets but due to the fact that I have pre existing nerve issues in my hands and I have to work, the dear Oncologist was able to persuade the insurance co. I am also on Carboplatin and Herceptin. The first cycle had me feeling the worst on Mon. and Tues so we shall see what happens this time. Surely I have learned that you can't predict anything as far as treatment goes. I have a Caringbridge website and on Tues. I had written that my hair was intact. That drastically changed on Thurs. and by yesterday I decided that I did not want to be dealing with the emotional and physical mess that was rapidly developing on my head. So, I bit the bullet and went for the shave after chemo. The hairdresser used the longest setting so it is not truly bald per se. About an inch of spikey and OH MY, wayyyy too much gray was hiding under all that thickness! I have 4 brothers (and a sister) and I mentioned that I now look just like my bro's, in all aspects except for from the waist down! I see the PS on Monday and am anxious to see if he will reconsider no fills of the expanders until after chemo. That was his thinking last month after that nasty infection and scar revision. Though now the scars look nice and healed. I would not risk it all just for a few fills but sure would be nice if he was comfortable doing so!
Have a wonderful long weekend ladies. I am looking forward to my daughter coming during the week. Lucky her, as a School Social Worker, she gets all the vacations, including the entire summer! We are going to pick out wedding invites and start planning the shower. It surely is a great thing to have in my life now. I just wish I could give it the focus and prominence it would ordinarily get from me.
Later Raiders!
Ellen
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