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CHERYN321's Photo CHERYN321 SparkPoints: (0)
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8/29/10 7:02 A

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Hi Jody! Lots of good advice here with this great group of ladies!! I am 46 and was diagnosed on April 15th. I had a double mastectomy with immediate reconstruction (tissue expanders) on May 17th. I am currently getting radiation therapy and all is going well. I know your new life path is a difficult one, but just remember that you will get through all of this. It is more scarey now because you still "face" what is yet to come. Once you go through the first step, and start your new journey, it will get easier, and you will meet alot of wonderful, supportive people along the way! Keep your spirits high, and a good, positive attitude, and know that you will be okay. Your new life path will not change you....it is just a new road for you to follow for a while. Good luck at your appt on the 1st! We will be thinking of you!
Cheryn

Cheryn :)

You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.

~~Eleanor Roosevelt~


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JOCALAT's Photo JOCALAT Posts: 1,036
8/24/10 3:47 P

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Jody: Your amazing weightloss could have been your godsend in finding the bc....once you are through the surgery and reconstruction , if you opt for it, you will rock in a bikini....my mom did and was still wearing hers at 46 after 4 kids and a mastectomy, no reconstruction!!

SWARMSOFLIZARDS's Photo SWARMSOFLIZARDS Posts: 231
8/24/10 3:29 P

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Hi Jody,
One thing I forgot to mention in my earlier e-mail: I asked my doctor for something to help me sleep shortly after the diagnosis, since I was having mostly sleepless, anxious nights. It was a big help for me, just thought I'd pass it along!
Meredith

Meredith

"Imagine that in front of you is a castle. That's where you want to be. But surrounding that castle is a moat, full of piranha. The only way to get into Sexy Abs Castle is to swim across the moat and let the little fish painfully chew off hunks of fat. The real situation is exactly like that, only the swim will take years."
tinyurl.com/piranha-moat


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JODY22002's Photo JODY22002 Posts: 375
8/24/10 3:25 P

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I'm not sure if our hospital has a patient navigator or not. That's something I will check into.

I am intensely private. I am one of those people that is always there for other people but I keep my own thoughts to myself. The more I think about what's coming, the more I think that I really don't want anyone coming with me other than my husband. It's just not something I want to share with others.

I feel somewhat better this week. I am struggling with depression and the waiting is still driving me crazy. I'll be glad just to get to the appointment.

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MAURIZIA's Photo MAURIZIA Posts: 15,640
8/23/10 12:45 P

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Jody, I don't know where you are but does the facility where you will have the surgery/be treated have a patient navigator available? Our local hospitals have them and they are amazing as they help you navigate information for making decisions, making sure you get the proper info, care and treatment. Just something to look into.

Mauri, EASTERN TIME ZONE, NEW ENGLAND

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." - St. Francis of Assisi

"Love yourself. You are the ultimate act of creation, fashioned by the hands of a Divine Artist." - fCheryl Richardson, rom GRACE CARDS (a 50 card deck)


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JOYSGARDEN's Photo JOYSGARDEN SparkPoints: (0)
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8/21/10 5:51 P

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Anger is one of the stages.... It's a grief about the possible loss of part of your body. It won't make you less of a woman, so don't let yourself feel that way. You can still get a really cute bathing suit and show off your fantastic weight loss anyhow, boobs or not! Think AA!!! A friend of mine is so small in that department, she claims she could go topless on the beach, and people would say "Good Afternoon Sir"! Vent your anger safely, keep good spirits, and do what you have to do to keep your life going along healthy.

And make it a teeny weeny yellow polka dot bikini!!!

Edited by: JOYSGARDEN at: 8/21/2010 (18:24)

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IWANNABEE's Photo IWANNABEE Posts: 642
8/21/10 5:50 P

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Jody,
You are going to look great in that bikini!!!
Hugs,
Jo emoticon

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SWARMSOFLIZARDS's Photo SWARMSOFLIZARDS Posts: 231
8/21/10 2:49 P

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Jody, I hope you don't think this is too crass, but the reconstructed boobs do have one big advantage: they defy gravity! I've got tissue expanders in now and am about the same size as I was before, but I don't need to wear a bra now! I wear a sports bra at the gym if I'm doing anything high-impact, but that's it. So maybe you can rock a teensier weensier bikini on the beach!

emoticon

Meredith

"Imagine that in front of you is a castle. That's where you want to be. But surrounding that castle is a moat, full of piranha. The only way to get into Sexy Abs Castle is to swim across the moat and let the little fish painfully chew off hunks of fat. The real situation is exactly like that, only the swim will take years."
tinyurl.com/piranha-moat


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VIRTUE-TRIUMPS's Photo VIRTUE-TRIUMPS Posts: 200
8/21/10 2:29 P

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You are on the right team Jody we are happy you joined us and when you need a sounding board it is great that you share with us. Praying for you for strength and the best possible outcome with your battle. emoticon

JODY22002's Photo JODY22002 Posts: 375
8/21/10 12:31 P

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Thank you so much!!

Taking a friend with me isn't really an option. I haven't really told anyone. I don't think my h could emotionally handle going with me and the two friends that I have told, both are not handling it well. One of them starts to cry every time I mention it and the other just keeps telling me I will be fine. I think I will call our local chapter of the Cancer Society and ask whether they can send someone with me.

I did tell my parents last night. They live thousands of miles away so there really isn't anything they can do. Plus, I have a complicated relationship with them. I have seen them only 3 times in the last 20 years. 2 of those times were for my sisters funerals.

I have researched a lot. I do carry the gene and I have a really strong family history so I am really leaning toward a mastectomy. There isn't an option for radiation here. I would have to travel to another city which would mean I would be away from my children. I don't, however, know if I would be a candidate for reconstruction though so I will just have to wait and ask.

I am finding that I am angry. My whole goal on this weight loss journey was to be able to wear a bikini and look good in it. I have worked hard to lose 90+ lbs but I am not quite there yet. Now I am going to lose a boob(or two) and I won't be able to do it. I know it's shallow, but it ticks me off!!

Thank you so much for the support.

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GLOMER's Photo GLOMER Posts: 4,579
8/21/10 12:01 P

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Hi Jody, This is a good team to be on. As you can see they give pretty good advice. I agree with taking a friend - I don't always hear everything even when something isn't really wrong so when I had my appointments I took someone with me. Also Dr. Love's book gives great infommation. Hugs to you and I am so sorry about the losses you have had.
I had a mastectomy last year only on one side because I had previous surgery to have a kidney removed (not related to the CA) so didn't have both breasts removed. I keep rambling and erasing - so what I want you to know is that we all care and will support you through this. Hang in there. emoticon

Eastern Time Zone


I expect to pass through this life but once. If, therefore, there can be any kindness I can show, or any good thing that I can do to any fellow being, let me do it now as I shall not pass this way again.



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JOYSGARDEN's Photo JOYSGARDEN SparkPoints: (0)
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8/20/10 9:21 P

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Wow Sue, you gave me hope with your comments to Jody! 20 years?!! I hope I'm as lucky as you. It's been 7 years for me, so I consider myself sort of lucky, but I sure hope I make it to the point where I too can say, "It's been 20 years". Here's to at least another good 20 for you! emoticon emoticon emoticon


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SOUPY18's Photo SOUPY18 Posts: 3,314
8/20/10 7:39 P

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Hi Jody,
You certainly have been through a lot in your life, but your new attitude will help you through. So will your team members here at S.P. I can't give you too much advice as I am one of the lucky ones -- it has been 20 years since my first bout with breast cancer and much has changed since then. You have chosen the right place for support and encouragement. Welcome -- My prayers and thoughts are with you.
Sue emoticon

A diamond was only made beautiful after millions of years as a lump of coal.


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JOCALAT's Photo JOCALAT Posts: 1,036
8/20/10 4:18 P

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Hi Jody:
Welcome to the best team on spark!! First of all. let me say how sorry about the losses in your life. You have been through a lot in your young life...but you are strong and will get through this...we are here for you!!
I am 47 years old, diag on May 26th of "10, with er/prog +, HER -, 3mm, lumpectomy, no BRAC genes, no chemo,no nodes, rads (33 in all - I finished 30 today and three to go!!) and my mom died at 47, diag at 36 years of age.
I think that once they determine the size, if nodes are involved, location, your age, margins, BRAC gene then you may get a sense on how to proceed. You have options. Have them show you stats on lump. vs mastectomy, chemo vs no chemo ect. For me and my situation having a mastectomy did not improve my odds of not getting a reoccurrance, so that made an impact in my decision. My cancer was originally thought to be 9mm, was instead 3mm.
Get your self a great surgeon, I asked around and I went to the dr that all the dr's send their wives to....and when their office put me off for another month for an appt. I walked over to my gyn and said you need to make a courtesy call yourself...the next thing I knew I had an appt and a lumpectomy the following week. Ask for a copy of all reports that are done on you and keep them in a binder or folder. It helps to be able to refer to them when need be....and yes, please bring someone to the appts., my husband asked questions I hadn't thought of ....remember, you have options, take a deep breath...once you make your decison you will begin to relax because you will feel like you are in control...I am sending you lots or prayers, good thoughts and lots of hugs....Chris emoticon emoticon emoticon

Edited by: JOCALAT at: 8/20/2010 (16:20)
GATOR12's Photo GATOR12 Posts: 4,655
8/20/10 2:00 P

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Hey, Jody! Glad to meet you but as others have said we are sorry you are here! But as you have found out lots of caring survivors and ones who care are here with love, support and their stories. Also as you have heard each story is different because each person's cancer and body is differnt. You will want to listen to advice from the specialists you see and use that to HELP you decide what to do.
I had bilateral at age 51 and do not regret it. My tumor was small but was aggressive and with fibrocystic (lumpy, bumpy other breast) disease, that bilateral was what dh encouraged me to do. I also agree w/ taking other people with you to listen and help you remember what is said.
You have much experience w/docs so won't speak to finding the right one; just wishing you the best and asking you to keep us informed and questioning if you need to! Brenda, RN from Missouri

Brenda


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MAURIZIA's Photo MAURIZIA Posts: 15,640
8/20/10 1:39 P

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Hi, Jody. I have no personal experience with breast cancer but have worked with cancer patients and now for an agency that focuses on breast cancer.

I would like to echo the suggestion that you bring a friend along with you and give him/her a notebook and pen to take notes. Be sure to take your list of questions, and I won't repeat any since yours and those suggested are good questions to ask. Don't be rushed. One question I would add is about having genetic testing done, too, especially since you have daughters. There is so much being done for targeted therapy and detection so it is good information to have...and don't assume you have the gene. My boss' wife (he's an oncologist) her mother, grandmother, two sisters and a niece all had breast cancer. She got tested since they have 4 daughters and 7 granddaughters - but she does not carry the BC gene.

I agree with Joy that you may want to seriously consider a more intensive approach to treatment given your family history, but again, each woman's situation is different so you really need to hear what the surgeon has to say. Also, be sure you are treated at a well known, experienced institution. They will have the most up-to-date treatments available to you.

Lastly one of the best pieces of advice a breast cancer survivor shared with a high school class that we taught was, "If you are not comfortable with your doctor - no matter what you see her or him for - find a new doctor. How you feel about him or her will affect what decisions you make about yourself."

I hope we haven't confused you more...but that we have expanded your list of questions...for the more you know, the more educated a decision you can make.

Mauri, EASTERN TIME ZONE, NEW ENGLAND

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." - St. Francis of Assisi

"Love yourself. You are the ultimate act of creation, fashioned by the hands of a Divine Artist." - fCheryl Richardson, rom GRACE CARDS (a 50 card deck)


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VAMPIREQUEEN1's Photo VAMPIREQUEEN1 Posts: 577
8/20/10 12:14 P

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Hey
My grandmother lost both of hers to breast cancer and what the doctors did was put bags filled with water to make hers look normal. I didn't even know until I was 16 that that happened(they looked normal and felt normal)! I knew she had had breast cancer, but not that she lost hers. Good luck!

Please, let me know how it goes and how you feel afterward!

Edited by: VAMPIREQUEEN1 at: 8/20/2010 (12:15)
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SWARMSOFLIZARDS's Photo SWARMSOFLIZARDS Posts: 231
8/20/10 11:19 A

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Hi Jody,
I'm so sorry about your diagnosis.

I was 28 when I was diagnosed last year, and I ended up choosing a bilateral mastectomy, then had delayed reconstruction. A big reason I chose the more aggressive surgery was because I was young and wanted to reduce my risk over the coming years. I really liked my boobs, but once they had cancer (well, one did), I didn't feel bad about getting rid of them!

I'm not finished with the reconstruction yet (lat flaps with tissue expanders), but my breasts look normal under clothes. They certainly don't look real naked, but from the pics I've seen of finished reconstructions, they can look very real eventually.

I'd recommend checking out the breastcancer.org ( www.breastcancer.org/ ) website for more detailed questions about talking to the surgeon. Also, Susan Love's breast book was a fabulous resource for me. The section on interpreting your pathology report was especially useful.

Meredith

Meredith

"Imagine that in front of you is a castle. That's where you want to be. But surrounding that castle is a moat, full of piranha. The only way to get into Sexy Abs Castle is to swim across the moat and let the little fish painfully chew off hunks of fat. The real situation is exactly like that, only the swim will take years."
tinyurl.com/piranha-moat


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PEACEFUL-SPIRIT's Photo PEACEFUL-SPIRIT Posts: 16,617
8/20/10 10:59 A

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emoticon emoticon emoticon Big Welcome Hugs!!! I am a 3x survivor of bc, it was hard but I made it. Sending you my sincerest wishes, love and care in all you are experiencing. Keep believing. emoticon emoticon

Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

Motivational Quote:
"You have within you a supply of energy limited only by your ability to discover and develop it. In body, mind and spirit, you are endowed with capabilities far greater than you know, keep reaching for your potential. "




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JOYSGARDEN's Photo JOYSGARDEN SparkPoints: (0)
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8/20/10 10:58 A

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Jody, if I could make a suggestion... Take a friend with you to your appointment, even if you significant other goes. He is usually too upset also the remember what was said, and if you don't want to rely on notes, take a small tape recorder with you so that you can go over it at home when you've had a chance to calm down.

I think, with your family history, I would be aggressive. But only you know what "feels right" for you to do. Keep us posted on how you are doing, and good luck hun.


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STANNER3's Photo STANNER3 Posts: 2,459
8/20/10 10:11 A

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Just a side note on the chemotherapy issue, it is not only used when the cancer has spread, it is used based on the size of the tumor as well. Mine had not spread, but the tumor was larger than 1 cm, so we went the chemo route.

Suzanne

Suzanne

That which does not kill us makes us stronger.

Phil. 4:13 "I can do all things through Christ who strengthens me."

"A pessimist sees the difficulty in every opportunity; An optimist sees the opportunity in every difficulty. Winston Churchill

"Victory is not found in the ease of our circumstances, nor in the strength of our own resources, but in the presence of the Lord, who is with us" Roy Lessin


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STANNER3's Photo STANNER3 Posts: 2,459
8/20/10 10:08 A

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Hey, welcome to the team....but so sorry you're here....if that makes any sense!!

Lots of good questions, and I agree with Jo, bringing somebody with you to the consult is a great idea, too much going on for you to remember everything that is said. I think most of your decisions will happen after you meet with the surgeon and find out what their opinion is on the choices.....I cannot speak from reconstruction, as I went the lumpectomy route, but there's lots others here that can advise you on that. (I was also the first in my family to have BC, so I can't relate to the strong family history that you seem to have, and that in itself might make your choices different than mine)

Please keep us updated, we really do care and want to be here for you!!

Hugs-
Suzanne

Suzanne

That which does not kill us makes us stronger.

Phil. 4:13 "I can do all things through Christ who strengthens me."

"A pessimist sees the difficulty in every opportunity; An optimist sees the opportunity in every difficulty. Winston Churchill

"Victory is not found in the ease of our circumstances, nor in the strength of our own resources, but in the presence of the Lord, who is with us" Roy Lessin


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DEETHEDIETITIAN's Photo DEETHEDIETITIAN Posts: 356
8/20/10 10:00 A

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Jody,

Welcome and ((((hugs))) ~ I think you are doing the right thing by reaching out for support from this (or any) group. I have found this group to be a lifesaver for me on many occassion.

I was diagnosed with breast cancer this past April (tax day to be exact). I was 43 at the time of diagnosis. Every woman in my family (except one aunt) has had breast cancer. None have died from it though. Of course, as someone else has mentioned. Only you can make the decision that is right for you after speaking with your doctor... but having said that and been where you are.... I will share what has worked (so far!) for me.

I chose to have a double mastectomy because of my family history. After speaking with my doctors, my husband and I decided that it was the best long term decision in terms of helping to prevent a recurrence. I also chose to do immediate reconstruction (I was able to do this because I had the mastectomy which meant I didn't need to have radiation therapy. Radiation therapy may damage the elasticity of the skin which would not work for immediate reconstruction).

What immediate reconstruction has been like is.. the same day I went for the double mastectomy (the day before my birthday!).. there were two surgeons (oddly enough, husband and wife!).. one removed the breasts and the other did the reconstruction.

What I mean by reconstruction is that prior to surgery I met with the plastic surgeon and we discussed what size I wanted to be (heck, i used this as an opportunity to go up a size since I was always very small!). He showed me a plastic "expander" and explained that he would fill the expanders over time (every 3 weeks or so)until it reached the size we agreed on. So -- immediately after surgery I had little "bumps" as he called them. I wasn't totally flat (which helped me deal with this psychologically).

I am nearly done with my saline fills - I have one more and I have only one more chemo treatment (total of 4 chemo treatments for me because it was preventive in nature since the cancer hadn't spread)... Once I am done with chemo I have to wait about 8 weeks to have the expanders removed and have the permanent implants inserted. Then I will have to wait another 6 - 8 weeks until the implants settle into their natural place. At that point the doctor will create nipples. He'll do this by cutting an X into the nipple area and flapping the pieces over top of one another. It heals into a little (or large, depending on how big I want the nipple) bump. After that is all healed.... he will tattoo an aereola. Pretty amazing - what they can do in terms of reconstruction!

I am sure your mind is spinning at this point. Mine was too. This is not easy but you will get through this by asking the right questions (there are no "wrong" questions!), by reaching out for help like you are and by being as positive as possible.

My Mantra throughout this has been HOPE.... Holding On to Positive Expectations. It works for me!

Write to the team any time... if you have questions or fears or just need to vent. Everyone on here is amazing and they are all at different points in the healing journey! Lots of HOPE here!!

My prayers are with you ~~ sending positive vibes your way! ((((hugs)))))

Dee









It is not enough to simply show up. You need to step up for results.... keep on stepping! Dee


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IWANNABEE's Photo IWANNABEE Posts: 642
8/20/10 2:06 A

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Jody,

First off let me say welcome to the team. This is a great group, very kind, knowledgeable and caring.

Your questions are really tough. I'm not sure what the right answer for you is... only you can know that. You have a good start on questions for the surgeon. Write them down and as you think of more, add to your list. Ask how your conditions may affect the result of lump. or mast., healing times, side affects, differences in meds, would you need radiation both ways? It's a good idea to have someone accompany you and take notes for you as it can be so overwhelming.

I am the first one in my family to have BC. I went for the lump. but when cancer was found in the margins, had a partial mast. with lymph nodes removed a month later. Prior to this, except for being over weight, I was as healthy as a horse!

Please keep us updated. You don't have to do this alone. I'm betting that other team members can be more helpful than I.

Stay positive and keep your sense of humour!
Hugs,
Jo emoticon

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JODY22002's Photo JODY22002 Posts: 375
8/20/10 1:15 A

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Hi everyone.

Last Thursday was my big day. I found a lump a couple of months ago and had a mammo and then a biopsy. Last Thursday, I had a second mammogram and when she finished and then said she would be right back and didn't return for a long time, I knew something was up. She came back and sent me for an ultrasound and after what seemed like a really long exam, brought in the radiologist. From what I understand, my tumor is very large. There are two side by side...one is cancerous and one is not. Both need to come out I am scheduled to see the surgeon on September 1st.

I am 35 years old. I also have Ankylosing Spondylitis so my immune system is compromised. My mother is dying from Metastatic Breast Cancer. My grandmother also died from Breast Cancer in her 50s. When my sister passed away in 2007 from an etopic pregnancy, her autopsy showed she also had Breast Cancer.

What questions should I ask the surgeon when I see him? How do I choose between a lumpectomy and a masectomy? Is it better to have a masectomy if you have a family history like mine? How does reconstructive surgery work? Do your breasts look normal after having it?


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