Dis Breast Cancer Survivors Part II -GAGWTA!

[CherylDan]

GAGWTA!

Merry...so sorry about Buddy.

Linda...love your pictures!

Wish I had a trip in the works, but not in the forseeable future. DH is in the middle of trying to change jobs, DD23 is getting married in Oct, and DD18 is in college. Add to that the stack of medical bills we are still paying on, and any thoughts of a trip are pretty short lived! But it sure is fun to live vicariously thru everyone else!

Anybody else here sick to death of winter???? Yuck, yuck and yuck! LOL, I'm ready for Spring!

 

[NHAnn]

Dawn--
I was diagnosed with DCIS in May of 2005, 3 days after Linda (Pea-n-Me) and Laura (Laurabelle) started the original DIS Breast Cancer Survivors' thread. (There is a link to it in the first post of this "Part II" thread.) And although it's not a diagnosis that any of us would ever wish on anyone else, there are many positives to be found on the journey. While it is so fresh and raw for you right now, that is a concept that you can't absorb right now.
As others have said, the point that you are at right now is the hardest, IMHO...the shock, the "why me?", the fear and uncertainty....for yourself and your family. The WAITING between appointments and procedures before you have the full picture of your situation and decide on your specific treatment plan. I found it difficult and scary at first, but then empowering, that it was ultimately up to ME to decide what treatment I wanted.
Sending you and as the others have said, we are here for you...on the thread or by PM or even regular phone.

GAGWTA ladies....I'm off work today and have a list a mile long of "to-do"'s after I get my morning computer fix at a leisurely pace!

 

[violetshelby]

Hi Dawn,

sorry you have to be here , but this is a real supportive and caring place when you need it the most.I know they really helped me with all of my questions when I was diagnoesd in sept. 2007.
Your situation is similar to mine in that I was Diagnosed at 40 ,with my first baseline mammogram. I was in complete shock , but I found this thread soon after and learned some questions that I should ask my Surgeon.At the time my 2 Daughter's were 8 and 11 and telling them was the hardest part but they sure surprised me and have become real supportive and caring. I am real proud of both of them. I had the surgery in October, started chemo. in November and now have only one chemo. treatment left on the 28th.

So glad you found GAGWTA.

 

[Amy]

Hi Dawn! Glad you found this thread, but sorry you had to join us. You'll get lots of support here, the "regulars" are absolutely wonderful ladies!

One thing I'd like to suggest is not only to call and ask what the pathology report says, but to get a copy of it for yourself. Yes, you won't understand everything it says, but you'll be looking at exactly what each one of your doctors is looking at and you can ask "what does this mean". It's been almost 6 years since my diagnosis and surgery, but I got a copy of my report from my surgeon and went over it with my oncologist. I even learned that some of those big medical words were actually good news mixed in with the bad!

 

[DeeCeeSW]

Again, thank you all for the warm welcome. I am really trying to take it easy today as I know tomorrow brings about the start of everything...

My breast surgeon is within the Cancer Institute of my hospital (Robert Wood Johnson in NJ is a comprehensive care center). I realize that he is a surgeon and not an oncologist. Is it safe to assume that an oncologist will be assigned to my case within the institute? I am confused right now.

 

[Pea-n-Me]

My breast surgeon is within the Cancer Institute of my hospital (Robert Wood Johnson in NJ is a comprehensive care center). I realize that he is a surgeon and not an oncologist. Is it safe to assume that an oncologist will be assigned to my case within the institute? I am confused right now.

Yes, most likely. You will see that the different docs bring different perspectives. The first person you saw I believe was the radiologist - they don't always talk to patients directly. Next, you will re-consult with the surgeon to discuss surgical options. Surgeons also often have a unique way of interacting with patients.

You will be referred to an oncologist for your adjuvant therapy, if indicated. This is where you will (hopefully) get the warm fuzzies. Since you'll have time between now and then, start to ask around for the names of good oncologists at that center from patients and nurses who work there if possible. You want to find one who has a wonderful bedside manner and is well versed on the latest in oncology. This is the person you will have a long term relationship with if you will be receiving chemo, radiation and/or tamoxifin (ie adjuvant therapy). (I am several years out and until recently still seeing my oncologist every 4 months.) Remember too, you will probably be seeing a nurse practitioner a lot as part of the team also, so make sure you like and feel comfortable with that person, too (though they can sometimes switch around if there's a preference since they often work with several doctors). If you need radiation, you will also need to find a good radiation oncologist. (My RO was my favorite doc, really fantastic.)

It can seem overwhelming but just take one step at a time. It's true, once you get a plan in place, it seems better. The unknown right now is the worst. Hang in there. How is your son doing? Do you have just the one child? If you check the American Cancer Society website, they have some books specifically for children whose parents have cancer.

 

[DeeCeeSW]

Thanks for the quick response. My surgeon is actually ok when it comes to bedside manner. He was more than willing to answer any and all questions. The radiologist, however, was quite chilly.

I feel fortunate to have access to the Cancer Institute. Everyone and everything is under one roof (so to speak) and they consult with each other. I believe I can request a second opinion within the facility--my understanding is that the doctors discuss all cases at their multidisciplinary meetings. I just got this from their website:

"The Cancer Institute of New Jersey incorporates the varied disciplines that define advanced state-of-the-art approaches in comprehensive cancer care. These approaches include sophisticated techniques in diagnosis, surgical options, chemotherapy, hormonal therapy, biological therapy, and radiation therapy. These services are provided in one comfortable, private setting that enables a patient to see specialists from several disciplines during one appointment and encourages dialogue about diagnosis and treatment options. A dedicated team of nationally renowned specialists including medical oncologists, surgical oncologists, radiation oncologists, social workers and nurses identify and meet the needs of each patient. Each multidisciplinary team focuses on a particular disease and is led by an academic physician who is an expert in the etiology and treatment of that disease. Team members meet weekly to discuss each new patient, as well as established patients who may benefit from changes in their treatment regimen. Experts in that specific disease site from the Departments of Pathology and Diagnostic Imaging participate in this weekly meeting. Cancer Institute faculty are involved in basic laboratory and clinical research in an effort to bring new understanding regarding the causes and mechanisms of cancer directly to the patient in the form of innovative treatment."

My son is doing ok. Yes, he is my one and only. He has been asking questions and we have been answering them to the best of our ability (all the while trying to keep it age appropriate). We will fill him in as we find more things out. He has caught me crying on and off this weekend and has asked if I am alright. I think he will be ok. A lot of people have reminded me how resilient children can be and that sometimes we need to give them more credit than we do. DS is already a sweet and caring individual who likes to help others. I think it's all in the way I approach and deal with this situation that will make the difference regarding how he reacts to what's going on. I know I have to feel and allow myself to cry but I also have to show him that I am a strong person.

I will definitely check out the ACS website for book recommendations, thank you!!

Dawn

 

[BeadyLady]

Dee - Stay Strong! Just know that you and all the rest are part of a pretty special group!

Violet - woo hoo - one more! That is great news! If your hair fell put - it will come back so soft that you are gonna love the new look!

GAGWTA!

 

[MerryPoppins]

A girl in my breast cancer group said she'd found a playdate buddy for her daughter whose mom had had a similar breast cancer diagnosis. That allowed her daughter to see that the mom was doing okay. It also gave her daughter a safe pal to talk to. I thought that was kind of cool. If you have access to know someone who has a child the right age. I can't remember how she found the friend...maybe through the group?

I've thought since then that it'd be cool to start a group for kids of cancer patients. It could be a safe place to talk about feelings (without worrying about how mom/dad feel about what you say) and ask questions about how other kids cope. Maybe have some sort of stress reducing activity each month or whatever. I know they'd all be coming from different situations. But my kids found at school that many friends heard "cancer" and asked when I was going to die. It wasn't exactly the support they were seeking. I also know that my DD didn't want to cry in front of me. She thought she had to stay strong for my benefit.

 

[DeeCeeSW]

I am wondering how much I should be telling the neighbors. We are kind of out of the loop here. We are on friendly terms with everyone but not close with anyone in particular. My DS is younger than most of the children on our block and he has severe food allergies and pet allergies which prevents him from going to certain houses.

I want the support, but I worry that once it gets around that the kids at school will start treating DS differently. I am a SAHM and DS is a walker, so I normally drop him off and pick him up from school everyday. I have great girlfriends in the neighborhood who have already offered their assistance and I am grateful. However, less than a handful of people at the school currently know what I have been going through. I will need to update my son's teacher and speak to the nurse. DS will have access to "Miss Feelings" at school (this is what the school SW calls herself), which is somewhat of a relief.

Does anyone have any advice on how much to tell the neighbors when they really haven't played a part in your life on the block?

TIA
Dawn

 

[snappy]

I am wondering how much I should be telling the neighbors. We are kind of out of the loop here. We are on friendly terms with everyone but not close with anyone in particular. My DS is younger than most of the children on our block and he has severe food allergies and pet allergies which prevents him from going to certain houses.

I want the support, but I worry that once it gets around that the kids at school will start treating DS differently. I am a SAHM and DS is a walker, so I normally drop him off and pick him up from school everyday. I have great girlfriends in the neighborhood who have already offered their assistance and I am grateful. However, less than a handful of people at the school currently know what I have been going through. I will need to update my son's teacher and speak to the nurse. DS will have access to "Miss Feelings" at school (this is what the school SW calls herself), which is somewhat of a relief.

Does anyone have any advice on how much to tell the neighbors when they really haven't played a part in your life on the block?

TIA
Dawn

I guess it depends on the situation. One factor might be if you will need a hand with a pet if you are overwhelmed or having tests or procedures.

Another factor might be how much you watch over each others' houses. Until last October I was a SAHM also for more than 9 years. We routinely help each other out with pet care, picking up newspapers and mail when someone is out of town. Also, I talked to several of my neighbors to pick their brains on doctors and which hospital was best as no one in our family had been hospitalized since we moved here from New Orleans. Although none of my neighbors have had breast cancer, just like everyone else they have a friend, family member or someone they deal with in their daily life thay has. People were making calls for me and giving me feedback. It felt like a network of support.

Not to mention I received a nice dinner or two and a fruit basket and beaucoup lovely cards.

One guy took our turn with high school carpool.

Put yourself in your neighbor's shoes. Would you want them to tell you if the situation was reversed? Also, we have lived here for 9 years and truly do lend/borrow stuff and help each other move stuff, etc. Not every day certainly but it is a pitch in kind of relationship. It may be more typical of the deep south, not sure.

I am wondering how others on our thread might comment on this question. It is a good one. Ultimately, I guess you should do what you feel comfortable with. I have to say I felt very self-conscious one day early after my mastectomy leaving my surgeon's office with my drains and all in place. I realized suddenly that our neighbor across the street (he is a pulmonary doc) had an office in the same wing as my surgeon. As I passed him in the hall I could feel myself get red in the face and feel very self-conscious and anxious beyond reason. It was dumb, he is married to a pediatrician, the one DD12 goes to, our dear niece Jennifer trained under him during one of her rotations in med school, he is a great guy.

I guess it was the suddeness of the encounter and the fact that I still was not at all comfortable in my own skin, and that I was afraid either that the surgeon would leave those drains in longer (one was in for far too long) or that he would pull them that day and they would hurt like hell. It did show me that I had a ways to go to recover my composure. Maybe it stems from the fact that it is a breast issue. I can't imagine being that uncomfortable after surgery of another type or body part.

Hope you have a good night. Let us know how tomorrow goes.

 

[Pea-n-Me]

Shoot, I wrote out a whole response, but the Dis went down and one of my kids somehow erased what I'd copied and saved in an email. Sorry.

I was going to say that you sound pretty open. Word will probably filter down and you can also tell whoever you're comfortable telling. I think it helps reduce everyone's anxiety (and "fear factor") to hear exactly what the plan is going to be, but overall it is good to let the neighbors know in case you need help or someone to watch your son if you have to go to the hospital in the middle of the night or something like that, etc (which hopefully you won't, but hey, with any of this, you never know). The good thing is that almost everyone knows someone who's survived and thrived after BC, and it's those stories that you can derive a lot of strength and hope from (as opposed to the bad stories).

I was also going to say that people like to help. You may be surprised at who is most helpful and who is least. It can even change how you feel about some of these people later on. But that's part of the whole "life changing experience" part of having cancer. Sometimes you hear it referred to as a "gift" because it helps you see who and what are really important in life. We've discussed that here a lot. Afterward, many of us feel it's important to help others as many have helped us, and this is part of the spirit in which this thread was started in the first place. Paying it forward.

 

[MerryPoppins]

I'm trying to remember... my friend's mother and father live down the street. They knew and since her mom is a breast cancer survivor, she came by to check on me to see if there was anything she could do. I told the neighbors across the street because we often pick up each others mail for vacations, etc. And I told another woman down the street whose kids played with mine. One of my best friends lives a few blocks away and I told her right away. She was a huge help. She even picked up my kids the day of my surgery and brought them to us in the hospital.

I told parents at school that I thought might hear via our children. I told teachers and counselors (I think I did that via email). DH was a Boy Scout leader and we had both been involved with DD's Girl Scout troop, so we told the leadership there as well. I think probably everyone at my church knew.

Many of the people on our street and our schools still probably don't know, except I do have a survivor ribbon on my car. I think you just have to pick and choose who you feel comfortable sharing info with. I have a couple of neighbors that I don't really know well enough to want to share personal info with them.

 

[Pea-n-Me]

There was only one person who kind of wigged out on me and it was one of my neighbors that I didn't know very well. Our DD's were kind of friendly and she'd asked me if my DD would like to take dance lessons with her DD. I told her most likely yes, but that I was just starting treatment for BC and I wasn't sure what my schedule was going to be like between work, chemo, radiation, etc. Next thing I know I got a really strange letter from her saying basically she couldn't deal with it. OK. Whatever. She still acts strangely toward me to this day, and interestingly enough, one of her family members was dx'd with a very serious cancer last year too. I always meant to offer help but she still won't look at me long enough to actually make eye contact and initiate a conversation. I can only imagine once she went through the whole deal herself she might have felt differently about it.

 

[laurabelle]

~~~***GAGWTA sistas***~~~​

Welcome Dawn!​

I haven't read through all the responses, not feeling well today, so I'll be brief.

When you sit down with your surgeon to go over your results, get a copy of your pathology, it will help you understand better what to ask and with decision making. A wonderful website I recommend highly is www.breastcancer.org It is up to date, thorough, and easy to understand. I met the dr. who runs it, she's terrific.

I was dxed 9yrs ago... I had just turned 36 when it all started. I had stage II bc: DCIS, LCIS, Lobular and Ductal invasive cancer all in a very small .08cm tumor. I had 2 lymph nodes positive for cancer. I did 6 months of chemo, had both breasts removed and reconstructed using implants, did 5yrs of tamoxifen, had hysterectomy and ovaries removed and I'm currently on Aromasin. My dds were 2&4 years old then, they are now in middle and high school. They keep me focused on doing what I need to survive!

There are studies out confirming that survival rates are higher among people who participate in support groups...so you're in the right place!

 

[eeyorefan74]

Just wanted to chime in to support DeeCeeSW. I've never posted in this thread, but think it's fantastic to have this kind of support available on the boards. I was diagnosed in April 2004 at age 29, and had chemo, radiation, and a lumpectomy. Been doing tamoxifen and zoladex since then.

I read your question about whether to tell people or not. I'm not close to my neighbors and none of them knew what was going on. My family, close friends, and people at church knew, but I definitely didn't shout it from the rooftops. I wore a wig the entire time when I lost my hair and it looked real enough that people just thought I had had a hair cut. Anyhow, looking back I wish I had been more open about what was going on with my diagnosis and treatment. I think I missed out on a lot of support, and maybe the chance to help someone else with what I had been through.

My sister in law is going through cancer treatment now. She is very outgoing and has told everyone. She's on prayer lists everywhere and is getting an amazing outpouring of love and support that has made such a tremendous difference for her. Like someone else said, people want to help, and by keeping it to myself, I think I denied them that opportunity to feel helpful. All that being said, I think everyone is different, and each one of us has to decide how best to get through this journey. There's no right or wrong way to do breast cancer. You'll be in my prayers!

 

[DeeCeeSW]

Good Morning Ladies. Thank you ALL for your responses, thoughts and prayers, and I hope your day gets better, laurabelle.

Got the call this morning from the nurse practitioner to go over the pathology report (I am having it faxed to me in the next half-hour or so). It is a preliminary report that says I have both DCIS AND Invasive DC. There is no info. yet on receptors (it will take another week to get the results). The nurse explained that I will learn about whether it is estrogen or progesterone based and something about a HER2?

Nurse Liz said *in many circumstances* that a lumpectomy can be performed and radiation will follow. I told her that the surgeon had already informed us that I would most likely not be a candidate for a partial mastectomy if anything came back malignant bc he said the area was too large. I doubt the results will change his mind about this. I can always hope, but I have to prepare myself for the mastectomy. Nurse Liz then explained the procedure for a mastectomy and what I can expect, including chemo. She said that the surgeon will perform a sentinel node biopsy--apparently he has done many of these, but that an axillary would be necessary if any nodes come back positive. I imagine if this is the case that this could be done during the mastectomy?

I was very calm when we spoke having had the weekend to mull over my situation, however, I did start to dry heave after getting off the phone, which was not so great for DS to hear as he was getting ready for school. DS actually lost his front tooth this morning (well, he actually pulled it out) so I was dealing with that mini-drama at the same time.

I still have not decided what I will do about the neighbors. I have told the school nurse and DS's teacher. I have also left a message with the school guidance counselor. I have a couple of girlfriends in the area (our kids were in kindergarten together) who have already offered their assistance, and I know for sure I can count on them throughout this process. I DO see the benefit to having others know and it would be a great relief to have at least one neighbor I can count on, yet I still hesitate to say anything. The last thing I want is to be pitied. I don't want anyone feeling sorry for me.

This is tough

Dawn

 

[Pea-n-Me]

Laura

Welcome eeyorefan74. I'm glad you posted and happy to hear you're doing well. Hope you'll hang around, I'm sure your thoughts and experiences will be helpful to many.

I saw this and thought others might be interested re: Sheryl Crow http://edition.cnn.com/2008/SHOWBIZ/Music/02/19/sheryl.crow/

Dawn, sorry you had such a hard morning. It never hurts to get a second surgical opinion if for no other reason than to be certain you're making the right decision. Your oncologist may be helpful as well. I saw two surgeons and was amazed at how different their approaches to my case were: the first one barely mentioned lumpectomy, and the second one barely mentioned mastectomy. I wasn't sure which way to go. I read everything I could, but it was difficult reading about survival rates, morbidity, mortality, etc (I'm an RN which is both a blessing and a curse in situations like these, LOL). On asking my oncologist about it, she helped me put it in perspective and I ultimately chose lumpectomy. But for me it was a choice; that isn't always the case, such as when the malignant area is large and/or the breast is small. They will probably do an MRI on both breasts to make sure there are no other areas of concern before making a final recommendation. Hope your day gets better. I'm glad we can be here with you.

 

[annrae]

~~~***GAGWTA sistas***~~~​

Welcome Dawn!​

I haven't read through all the responses, not feeling well today, so I'll be brief.

When you sit down with your surgeon to go over your results, get a copy of your pathology, it will help you understand better what to ask and with decision making. A wonderful website I recommend highly is www.breastcancer.org It is up to date, thorough, and easy to understand. I met the dr. who runs it, she's terrific.

I was dxed 9yrs ago... I had just turned 36 when it all started. I had stage II bc: DCIS, LCIS, Lobular and Ductal invasive cancer all in a very small .08cm tumor. I had 2 lymph nodes positive for cancer. I did 6 months of chemo, had both breasts removed and reconstructed using implants, did 5yrs of tamoxifen, had hysterectomy and ovaries removed and I'm currently on Aromasin. My dds were 2&4 years old then, they are now in middle and high school. They keep me focused on doing what I need to survive!

There are studies out confirming that survival rates are higher among people who participate in support groups...so you're in the right place!

Hi Laura: I hope you are feeling better and that your day has improved. Reading your post to Dawn, I realized then just how much you have been through. You are a terrific, strong lady and how lucky we are to have you on this thread - how fortunate I was to have met you and your lovely sister!!

Take good care of yourself. Hugs Barbara

 

[annrae]

I just wanted to send all of you hugs - I've been busy and haven't had much of a chance to read all of your posts. Merry, so sorry to hear about Buddy - it is such a heart breaker to have to go through this. Laura, Laurie, Ann, Linda and please forgive me if I've missed anyone - hope all is well. I have been in touch with Dawn by pm and will be thinking of her and the decisions she may have to make this week. Cheryl, I hope your DH will find a job soon - it really is getting tough out there especially with children in college.

Take care all of you - we are having rain today which is better than snow. It is also sunny so with sun and rain, we may have a rainbow which makes me feel good. Hang in there everyone. Hugs, Barbara