Recently diagnosed. What do I do?
Comments
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Thank you all AGAIN...many times I'll be saying that I'm surebfbear said:Welcome GG
This is THE best place to be when you get that @$#!* bc diagnosis. I found this board shortly after my dx, and had never participated on something like this before, and now I consider a great many of the women here as family.
You can say anything you need or want to here, and everyone will understand. As you've already seen, there are many here with similar stories. You will never feel alone again!!
I had a dbl. mastectomy with reconstruction early last month. The left breast had a 5 mm tumor and loads of other DCIS (ductal carcinoma in situ). It was definitely "a goner." The right breast had a lot of weird, but benign, lumps and I was told if all my breast tissue was removed, I would not have to have any further treatment (assuming that in surgery and the final pathology report, nothing else turned up). I am 54 years old, I've already had a full hysterectomy, and I knew that if I didn't have the right breast taken as well, I would be constantly worried about the lumps...even if the two breasts "don't talk to each other).
My surgeon was supportive of my decision. She is fabulous, and trained at M.D. Anderson in Houston, so I had no misgivings about her advice. (My husband adored her too!)
So now both breasts are "foobs" (i.e. fake boobs ;-) ), but I do not need any chemo, radiation, or aromistase inhibitors (e.g. Tamoxiphen). I consider that great.
I am glad I had the dbl. mast. But that was my decision, given the information I had and the research I did. As others have said, do your research into your type of cancer, talk to your doctors and if you can't trust them, find doctors who you can trust.
Again, welcome....sorry you have to be here, but glad you found us!!
Hugs,
Debi
I saw the surgeon yesterday. He was wonderful...I felt an instant trust for him. He did not try to sway me whatsoever, but insisted it was my decision. He encouraged me to pray about it and make the decision that gave me the most peace. He gave me all my options, and he said a lumpectomy would give the same result as a mastectomy...but of course the mastectomy would reduce considerably the chance for a recurrence even tho there is no indication there would be a recurrence. It is a small tumor and not fast growing...bla bla bla. The decision that gives me the most peace from the beginning and even now is a bi-lateral mastectomy. (if one then both as I don't want to be lopsided ha ha) I'm sure that is somewhat radical right now, but I don't really see the "downside" except for the obvious....major surgery to recover from and NO BOOBIES....on a lighter note: my boss was talking about my decision and said "do I get a vote [yea right] Keep what you have" I said, "you are obviously a boob man" we laughed hysterically .... I do admit the thought of not having to do burning radiation or hopefully no chemo (which is not related to which route I go, I realize) weigh on my mind. I would be interested in some websites for preventive cancer protocols.
Seriously, I know some will say this is too much based on my tumor (even my son does, however, he will support whatever I do) but in my spirit, that seems the right thing to do. I have an appt with a plastic surgeon tomorrow for more info gathering...but I have decided to definitely do reconstruction if this is the route I go.
THOUGHTS??????0 -
Congrats, Pammy!Akiss4me said:GG...glad you found us!!
Well, what can I say except you sound just like me!! So now you know you are not insane!! Unless I'm insane and don't know it.....then your in trouble!! (I like to use humor to keep me sane!).
I marched into my surgeons office and TOLD him I wanted both babies gone....going with the BIG guns here and not taking any chances!! Also that they may as well just hit me with the trifecta (chemo, radiation, hormone therapy - was ER/PR + and Her2-). I remember coming home that day after the appointment and hitting the boards here with my post that started with the words..."I lost!!"
My surgeon understood my concerns but thought I had really nice boobies (hubby had the biggest smile on his face when Doc said that 'cause he thinks he owns them more than me! Shhhh....we won't tell him they are attached to MY body, not his. We'll let him have his fun!) My surgeon explained to me that I would benefit the same from a lumpectomy + treatment as I would any other way. That is when I learned to have complete trust in my Doctor. He was recommending what was best in MY situation. That is when I also realized how different everyone's situation really was & so they taylor the care specifically to each individual.
Also, when he first measured my tumor (of course from the outside) it was actually smaller than he thought once removed. I found out this is normal. However, it changed my treatment plan by .1cm which made me glad I did the lumpectomy.
My therory is that yes, it may come back down the road....then I will do the mestectomy. But on the same token, it may never come back in that breast! I had the OncotypeDX test done and just found out yesterday that my score of reoccurence was soooo low that it was off the chart!
You will always make the finale decision in your care (my surgeon would have done what I originally asked if I told him that was what I wanted). I'm glad I let him talk me out of it and I had time to think with my "common sense" and not my "panic"!
What you are feeling, I think, is pretty normal. I think everyone just wants it out of them!! Hang in there. Hear what they offer you and know that you do not have to make a decision in a split second right then & there. You do have time to think about it and gather all the info you need.
This is a great start for you as you will hear about alot of experiences here. Sorry for your diagnosis, but glad you found us!! Pammy
PS)Sounds like you may have had a "core needle" biopsy. That is what I had.
I missed your other post about your Oncotype results. Just wanted to say how happy I am for you. A low score is something you want in this case! Glad you failed your oncotype, girl!
Mimi0 -
Lorraine,Lorraine58 said:your recent diagnoses
GG, I also am a recently diagnosed suvivor. My advise to you is don't make a move until you gather enough information to decide what avenue of treatment is right for you.
My personal choice is not to poison and burn my body with conventional medicine. It makes absolutely no sense to poison my body to kill the cancer when my body is already in a weakened state that allowed the cancer to grow in the first place.
I am doing alternative protocols and am having good results. It does take work and commitment to change your lifestyle, but it has to be done anyway if you want to stay cancer free in the future.
I will consider surgery to remove the tumor in 3 to 4 months if the size doesn't continue to shrink, or if it is still there.
My decision is of course not what my doctors want, but it is my body and my choice.
I choose to retain a quality of life that I would not, in my opinion, have if I allowed the chemo and radiation, because of the long and short term damage these treatments are proven to do to the heart and other organs, as well as actually causing cancer in other organs of the body.
What I have found as a result of my research into all avenues of protocols, is there are sooo many proven alternative treatments out there that work, but the drug companies in effect "own" the industry and the FDA because of "profit", and they use all kinds of underhanded tricks to keep the truth from the cancer patients.
I understand where you are at, as my diagnoses was in April this year, and all I have done since then is research, research, research!
It is actually the toxins in our environment and our diets that is allowing this current epidemic of cancer everywhere.
When we (as consumers) wake up and demand change and start declining to buy or use or eat the lies that companies and commercials are shoving at us, then we can start to heal.
Please do you due diligence and research the alternative answers to dealing with cancer.
If you are interested, I will be more than glad to provide you with websites and books and treatment facilities you can access for help.
God Bless You with His Peach and Guidance,
Lorraine58
I agree with much of what you are saying. I think lifestyle changes are definitely in order after a cancer diagnosis. One must start thinking seriously about nutrition and exercise to strengthen and protect the body going forward. I also have feelings about drug companies and their profit margins and the reasons that alternative/nutritional therapies or the environmental causes of cancer are not emphasized in our culture.
However, I would be extremely hesitant about advising anyone to forgoe traditional therapies. I know that's not what you're doing, and that you're stating your own experience and beliefs. I respect that, but I wanted to get this out there. Chemotherapy is not without its (sometimes serious) side effects. Neither is radiation and surgery. However, they are known agents that have saved lives. For some people there is no option -- chemo and rads are a must. There are risks with everything, including alternative therapies. Declining chemo and rads if they are indicated could have deadly consequences.
I'm a person who wants every available agent to kill this thing. I did surgery, chemo, radiation, and now I am exploring complementary medicine as well. The important thing is not to harm your chances of recovery by relying on only one method or kind of therapy/medicine. I am not condemning your choices, just stating another side. Good luck with everything, and I hope it all turns out well.
Mimi0 -
WelcomeGG40 said:Thank you all AGAIN...many times I'll be saying that I'm sure
I saw the surgeon yesterday. He was wonderful...I felt an instant trust for him. He did not try to sway me whatsoever, but insisted it was my decision. He encouraged me to pray about it and make the decision that gave me the most peace. He gave me all my options, and he said a lumpectomy would give the same result as a mastectomy...but of course the mastectomy would reduce considerably the chance for a recurrence even tho there is no indication there would be a recurrence. It is a small tumor and not fast growing...bla bla bla. The decision that gives me the most peace from the beginning and even now is a bi-lateral mastectomy. (if one then both as I don't want to be lopsided ha ha) I'm sure that is somewhat radical right now, but I don't really see the "downside" except for the obvious....major surgery to recover from and NO BOOBIES....on a lighter note: my boss was talking about my decision and said "do I get a vote [yea right] Keep what you have" I said, "you are obviously a boob man" we laughed hysterically .... I do admit the thought of not having to do burning radiation or hopefully no chemo (which is not related to which route I go, I realize) weigh on my mind. I would be interested in some websites for preventive cancer protocols.
Seriously, I know some will say this is too much based on my tumor (even my son does, however, he will support whatever I do) but in my spirit, that seems the right thing to do. I have an appt with a plastic surgeon tomorrow for more info gathering...but I have decided to definitely do reconstruction if this is the route I go.
THOUGHTS??????
And so sorry you are going through this unwelcome journey. I think your doctor is right -- you should do what feels right to you in your heart. If that's a bilateral mastectomy, and you've thought it through and used all available information, than that's your decision. But just to let you know that radiation does not always burn and chemo is something you can get through. I finished radiation not two weeks ago and my breast is completely back to normal except for one area of darkening near the tumor site. Now some ladies do burn pretty badly, so there is another side. But I'm just saying it isn't necessarily going to turn out badly.
I had extremely aggressive cancer (early stage), but I still chose a lumpectomy. Yes, it may come back, but I'm comfortable with my decision. On the other hand I know women with Stage 0 cancer in one breast who had bilateral mastectomies. It is a very personal decision as you know. I don't think there's a wrong answer. Good luck and let us know.
Mimi0 -
I willDianeBC said:Just welcoming you GG and
Just welcoming you GG and wishing you the best. Your treatment is a very serious decision, so, please research your choices and make the best decision for you. Inre to the "perky" ones, please have your plastic surgeon show you pictures of reconstruction. And, I wish you the best.
DianeBC,
I hear you saying the "foobs" will not be 'perky' I have no concerns about what they will look like.......and I have seem some pictures in the book the surgeon's office gave me, but thank you for the "warning".
GG0 -
GG40GG40 said:Thank you all AGAIN...many times I'll be saying that I'm sure
I saw the surgeon yesterday. He was wonderful...I felt an instant trust for him. He did not try to sway me whatsoever, but insisted it was my decision. He encouraged me to pray about it and make the decision that gave me the most peace. He gave me all my options, and he said a lumpectomy would give the same result as a mastectomy...but of course the mastectomy would reduce considerably the chance for a recurrence even tho there is no indication there would be a recurrence. It is a small tumor and not fast growing...bla bla bla. The decision that gives me the most peace from the beginning and even now is a bi-lateral mastectomy. (if one then both as I don't want to be lopsided ha ha) I'm sure that is somewhat radical right now, but I don't really see the "downside" except for the obvious....major surgery to recover from and NO BOOBIES....on a lighter note: my boss was talking about my decision and said "do I get a vote [yea right] Keep what you have" I said, "you are obviously a boob man" we laughed hysterically .... I do admit the thought of not having to do burning radiation or hopefully no chemo (which is not related to which route I go, I realize) weigh on my mind. I would be interested in some websites for preventive cancer protocols.
Seriously, I know some will say this is too much based on my tumor (even my son does, however, he will support whatever I do) but in my spirit, that seems the right thing to do. I have an appt with a plastic surgeon tomorrow for more info gathering...but I have decided to definitely do reconstruction if this is the route I go.
THOUGHTS??????
Just want to wish you good luck. And, it is always your choice as to what you do. Just be sure and think it out.0 -
GG40,
I had a lumpectomy and it was found to be cancerous in 2007. It was somewhat bigger than your's.Initially when I heard it was cancer I thought,if this is what's trying to kill me take it off.Then I had to go in again to get my lymph nodes checked and for my surgeon to take out a little more tissue. She had given me a choice-partial mastectomy or full one. I asked her what she would do,and she said she would have a full mastectomy with reconstruction.Over my time of thinking about it before I had to make a decision(a couple of days),I decided that a full mastectomy was pretty extreme for me and that I wanted a partial. My surgeon and I agreed that if there were more spots than just the one(I had invasive ductal carcinoma where the cancer cells had actually"escaped" from my tumor)and/or it had gotten into my lymph nodes-that she would do a full mastectomy. If not,she would just do a partial. Fortunately she found clean margins and it hadn't spread to my nodes.Any more and it seems like they try to do what they call"conservation of the breast". In the end it is really your choice. Everyone is different.
Let us know what you decide on,and we will be with you every step of the way whatever you choose.0 -
GG40, I am wishing you goodoutdoorgirl said:GG40,
I had a lumpectomy and it was found to be cancerous in 2007. It was somewhat bigger than your's.Initially when I heard it was cancer I thought,if this is what's trying to kill me take it off.Then I had to go in again to get my lymph nodes checked and for my surgeon to take out a little more tissue. She had given me a choice-partial mastectomy or full one. I asked her what she would do,and she said she would have a full mastectomy with reconstruction.Over my time of thinking about it before I had to make a decision(a couple of days),I decided that a full mastectomy was pretty extreme for me and that I wanted a partial. My surgeon and I agreed that if there were more spots than just the one(I had invasive ductal carcinoma where the cancer cells had actually"escaped" from my tumor)and/or it had gotten into my lymph nodes-that she would do a full mastectomy. If not,she would just do a partial. Fortunately she found clean margins and it hadn't spread to my nodes.Any more and it seems like they try to do what they call"conservation of the breast". In the end it is really your choice. Everyone is different.
Let us know what you decide on,and we will be with you every step of the way whatever you choose.
GG40, I am wishing you good luck too and hoping that your choice is just that, your choice!0 -
Choice made -- Surgery scheduled
Thank you everyone for your encouragement and support. I made my decision on Wednesday, but left Thursday for the 4th of July weekend in Boston. It was an incredibly wonderful time and I was able to put everything else out of my mind and enjoy it. I LOVE Boston.
My double mastectomy surgery with reconstruction is scheduled for Friday, the 10th. I have complete peace about my decision and about the surgery and even the reconstruction. I chose silicone implants. My plastic surgeon is wonderful and was very informative and I decided I wanted the reconstruction. Actually God has provided me with wonderful doctors all around...think I already told you how much I like my surgeon, and my family doctor is a good friend.
As soon as I can get back on the computer after surgery, I will let you all know how it goes.
Thanks again for your support and encouragement.
GG0 -
GG,GG40 said:Choice made -- Surgery scheduled
Thank you everyone for your encouragement and support. I made my decision on Wednesday, but left Thursday for the 4th of July weekend in Boston. It was an incredibly wonderful time and I was able to put everything else out of my mind and enjoy it. I LOVE Boston.
My double mastectomy surgery with reconstruction is scheduled for Friday, the 10th. I have complete peace about my decision and about the surgery and even the reconstruction. I chose silicone implants. My plastic surgeon is wonderful and was very informative and I decided I wanted the reconstruction. Actually God has provided me with wonderful doctors all around...think I already told you how much I like my surgeon, and my family doctor is a good friend.
As soon as I can get back on the computer after surgery, I will let you all know how it goes.
Thanks again for your support and encouragement.
GG
Glad you are at peace with your decision. I will be thinking of you on Friday. Please let us know how things went when you can.
Mimi0 -
I am also glad that yourmimivac said:GG,
Glad you are at peace with your decision. I will be thinking of you on Friday. Please let us know how things went when you can.
Mimi
I am also glad that your decision is made and that you feel good about it. I wish you the best of luck GG! Please do keep us updated when you can!
Hugs, Jeanne0 -
The important thing is thatJeanne D said:I am also glad that your
I am also glad that your decision is made and that you feel good about it. I wish you the best of luck GG! Please do keep us updated when you can!
Hugs, Jeanne
The important thing is that you are at peace with your decision. I've gone the lumpectomy and radiation route and then nine years later the bilateral mastectomy and reconstruction route, because of a recurrence in the same breast. Both of these decisions were right for me, at the time. And, once I had made the decision, I too, felt peace with it.
Joyce0 -
Surgery over -- I'm home.jk1952 said:The important thing is that
The important thing is that you are at peace with your decision. I've gone the lumpectomy and radiation route and then nine years later the bilateral mastectomy and reconstruction route, because of a recurrence in the same breast. Both of these decisions were right for me, at the time. And, once I had made the decision, I too, felt peace with it.
Joyce
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.0 -
Great news!GG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
So glad it's all over ... and amazed that you are back on the computer so soon. But it's great that you are letting us know how well things went.
Just don't overdo it. Let everyone wait on you hand and foot and enjoy doing nothing except resting and recovering from surgery.
Take care ... and stay in touch. We're here when you feel like "talking" again ... :-)
hugs.
teena0 -
GGGG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
Welcome home!! I know you feel like you can do it yourself, but don't!! Just hang loose for a little while and heal. This is so very important. I'm taking FULL advantage in my house!! I'm still milking it! But, it makes my family feel like they are doing something to help me, so who am I to burst their bubble, huh? Hang in there. I hear the drains are a pain (didn't have them) but doable. Keep us posted. Pammy0 -
Welcome homeGG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
I'm so glad your surgery went well and that you are recovering nicely. Pammy is right. Don't lift a finger yet! You can start doing things soon, but let your family take care of you for a while and only do relaxing, fun things like curling up with a good book or movie. This is your time to rest.
Mimi0 -
Glad your homeGG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
I am glad your surgery went well and you made the right decision for you. Keep us informed on all and you are in my thoughts and healing prayers. Good luck on all reports.
hugs, jackie0 -
GGGG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
glad the surgery went so well, take it easy for awhile regardless of how you are feeling. You need to heal.
Congrats again
=^..^=0 -
GGGG40 said:Surgery over -- I'm home.
Hi all...thanks for your support and prayers. My surgery went very well Friday and I was able to come home Saturday afternoon. My kids have been here helping me, but honestly I feel like I could do it myself...but I know I have to take it easy...I do get tired. I wasn't able to talk to the surgeon myself (I did see a partner of the plastic surgeon and he said I could go home) but he told the kids after surgery that everything went amazingly well...whole thing only took 2 hours including reconstruction...but I don't have any idea what the procedure is for getting my path report or or how long it will take. I'll call the office today and see what I can find out. Anyway except for these stupid drains that drive me nuts, I'm doing great. Will get back in touch when I know anything. Thanks again.
So glad you're home and feeling great, but do as the others say and take it easy for as long as you need too. This is your time to heal, and keep your head up those drains will be out before you know it!!!!!!!!!!
Aurora0 -
Hi GG!!!aurora2009 said:GG
So glad you're home and feeling great, but do as the others say and take it easy for as long as you need too. This is your time to heal, and keep your head up those drains will be out before you know it!!!!!!!!!!
Aurora
So glad to hear all went well. You did the same surgery as I did, so I can "feel your pain." The tiredness was the biggest thing, and not being able to sleep on my side or stomach. I propped pillows all over the place! And there's the super-tightness in the chest around the implants, and the unhappy chest muscles....
But two months out, the incisions are almost healed, there's much less tightness, and I am able to do 10 "guy" push-ups again (with discomfort and a little pain, but I can DO them!!!).
Hope you keep doing so well! The best thing about the drains is getting them out. Be sure to keep your hands really clean, and/or use alcohol pads when you "strip" them before emptying them into your measuring cup. I've heard of too many women getting infections from not doing that...
Take care and enjoy being taken care of, even if you feel like you can do it all yourself. It's better to rest and let your body heal well than to try to "prove" something.
Much love and gentle hugs,
Debi0
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