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Posted 4/15/2007 5:54 AM (GMT 0)
Well, I was asked to start my own thread here but I'm really hesitant about this whole thing.  I've not been "staged" yet, but diagnosed with invasive lobular carcinoma.  I have posted this on a couple of sites already and am freaked out about it.  If you look at my blog/journel, you'll see the rest of the story. 

 

I just don't know where people get the strength and courage to say, off with the breast and let the chemo begin!  I'm just plain not there and am not sure I ever will be. Great first post huh?  Please, be gentle with me.  I'm trying to find some peace with this and move forward - just stumbling along the way - alot!

 

Thank you for being here.

 

(I'm from Rochester orginally, but now living around Keuka Lake)

Posted 4/15/2007 4:13 PM (GMT 0)
Well, Ruby when I was first told I had breast cancer I was so frightened of cancer, I didn't care about the breast I only wanted the cancer gone. Looking back I could have made another decision maybe, because it was very early. And my second choice would have been to have a double mastectomy to even out my chest. Of course I was 58 at the time and I wasn't planning to dance topless anyhow.

I didn't have chemo. I know that is pretty scary to think about, but my daughter did have it and she did very well. She said the tiredness was the worst for her. She had a little nausea, too but really didn't complain about it. She had the mastectomy and reconstruction done in one all day surgery.

My sister in law lived in the Rochester area for awhile, in a town called Holcomb. It was really pretty up there. I lived in very NE Ohio at the time so it was only about a four hour trip to visit.

I checked out your journal. I had not visited a site like that before. I like it because you express your feelings. I did not like the oncologist I saw. Since my cancer was not a big deal, he proceed to pounce on me about my weight, which at that time was actually good for me. Then he told me to come back in two years. When I told the girls at the desk two years, they said no one is ever told two years. So you know how that made me feel? So I never went back at all. It has been over ten years now.

Hang in there and keep in touch. We are not as active as we used to be here, but there are lots of veterans who check in and can help.

Hugs MK
Posted 4/15/2007 4:36 PM (GMT 0)

Hi Ruby! I am so glad that you found us and that you have posted. First, I want to assure you that your are NOT alone in all of the emotions that you have been experiencing. Each of us that has been told they have cancer has experienced the very same thing.

I honestly believe that you need to get a 2nd opinion. I would wait until all of the tests are completed. Then get copies of the scans and written reports and take those with you. It is also, very, very important that you take one or two people that you trust and feel comfortable w/ also. This will allow you to ask questions and give you another set or two of ears. You might also want to take a small tape recorder w/ you. As you know, you will be given lots of info and trust me, you won't remember half of what you are told.

The first surgeon I went to I knew immediately that he would NEVER touch me. So I made an appt for a 2nd opinion and loved the surgeon. I already knew who I wanted for my oncologist. My surgeon, family dr and oncologist all coordinate my care w/ each other. Each has all of the reports from the other one. No surprises. Remember, YOU are the physicians EMPLOYER...HE WORKS FOR YOU!

I know how difficult the waiting is. And yes, the nights are the worst time. Too much quiet and thinking. Try and stay busy if possible. Don't watch movies or shows that are depressing. Remember that laughter is a great healing technique.

You will find that some of your "friends" don't know what to do or say. This is very normal. But don't be afraid to let them know how your are feeling and if there is something that they can do for you. I might suggest that you call one of your local hospitals and ask if there is a social worker or counselor that deals w/ bc or call your local ACS and ask about support groups. Just having someone to talk to that has been thru this helps.

Chemo is NOT fun but it isn't the horrible thing that it use to be. There are meds for almost every side effect. I just keep thinking that it is ridding my body of all of those darn cancer cells.

Please come here and vent, cry, yell, scream..whatever you need. We are here for you.

Hugs...Deb

Posted 4/15/2007 5:43 PM (GMT 0)
Hi Ruby....first, let me offer you a big hug! We all have been in your shoes and remember the fear and terror that can overcome and feel paralyzing. You are not alone! As for the strength, you will find it when and where you need it, it is amazing. I remember having the same thoughts as you and you will surprise yourself. There is no choice in cancer, you got it and did not ask for it. But there is choice in how you react, cope, present to others and handle the active role in your medical care. Contol what you can, it will help you get through tough times when you know you have not lost the control. The week after diagnosis when I knew I had breast cancer was the hardest week of my life. Once I got the path report and started the process for staging, I knew i was in control. I made appointments, I read, I asked questions and made decisions, so I had a plan. Getting to that point will be a turn in the corner.

Absolutely consider a second opinion, even if you like your doctors. The peace of mind is worth it, as well as actually being offered alternatives. Get all the info you can to make your decisions. You may not have to have a mastectomy, some people have a choice. I had a lumpectomy, chemo and radiation. Each was easier than I thought it would be, and was all very tolerable.

Make lists of your questions and take a friend and tape recorder to the doctor's appointments, all will be invaluable. No question is silly, so let us know how we can help.

Hang in there!
Lori
Posted 4/15/2007 6:01 PM (GMT 0)
You are in a very difficult place right now. I remember at one point in my life, I said to my husband, "If I ever get breast cancer, you are just going to have to let me die, because there is no way I'm cutting off one of my breasts." That was before I had breast cancer. I had two young children at the time I was diagnosed, and all I could think about was getting the cancer out of me, because I didn't want my children to grow up without a mother, as I had done (I was 7 when my own mom passed away from cancer). I had a mastectomy, I had chemo, and I've watched my kids grow up, I've watched my first grandbaby being born...6 months of sugery and chemo was a small price to pay for the privilege of living all these extra years!

I know you're not there yet. I've had 12 years of health since I was where you are. But someday, perhaps you'll be sharing similar experiences with someone who is newly diagnosed and scared.

PS...My second daughter was born in Oswego, NY. We haven't lived in that area for a very long time, but it was one of my favorite places of all we've been in!

Take care, and keep coming back. That's what we're here for.

BEV

PPS...I did look briefly at your site.  Very nice!  I can tell you that, since I was diagnosed, I have not had a single phone call from my step-sister, nor does she ask about my health.  I had a long-time, albeit long-distance, best friend who didn't talk to me for about two years.  When she did finally call, she apologized for not having been there for me.  She said that she was just so afraid of losing me, she had to let me go.  I know it doesn't make much sense, but you know, as hurtful as it is, we all have to find our own ways of dealing with acancer diagnosis.  On a good note, I have made so many new friends since being diagnosed!  Many of them are right here on this board.  Some of us have been together since the last millenium!  LOL.  How old are you, may I ask???

 

Post Edited (barkyboys) : 4/15/2007 12:12:13 PM (GMT-6)

Posted 4/15/2007 9:49 PM (GMT 0)

Hi Ruby

First of all I would like to welcome you to our exclusive club (the one that no one wants to be a member of) Looking at your post it makes me remember all of the emotions that I went through when first diagnosed. I can honestly say the only thing that I have not felt was "why me". I have always felt that you are given things in life to make you grow and become stronger, this had made a big change in my life physically and mentally.

It sounds as though you have had good insticts when it comes to looking up as much info as you can. I was the same way and believe me it will help you. There will be times when all of the information makes it easier to deal with all that you will go through. I did go onto your personal site and read your thoughts and I can only tell you what I have decided to do with my own body. I was diagnosed in July of 05 and had a lumpectomy, my tumor was larger than they had anticipated so when the lumpectomy was done I had a large amount of my breast gone. The first few months after were not bad but after all of the swelling was gone there was a definate difference. I just had a mastectomy done last month and Im having my reconstruction done on Tuesday. I have not regretted my decisions at all, the only thing I would have done different is to have had the mastectomy right off the bat. I would never want to tell anyone what to do because it was such a personal desicion and I took alot of time deciding what to do.

The other ladies have given you great advice about your Dr appointments make sure you take someone with you and get a copy of all of your reports. I have been very happy to be able to look back on all of my test results.

I would like you to know that you will get a wealth of knowledge from the ladies here and an awful lot of love too, I dont think I would have dealt so well with this if I did not have my "breast friends". Feel free to write about anything that you want including a little pity party once in awhile is okay.

Hugs to you

Bernadette

Posted 4/16/2007 3:25 AM (GMT 0)
I'm 48 and extremely tired at the moment - trying to gear up for the PET scan up in Rochester (45 minutes away) in the snow tomorrow - been a long hard day, but thanks for being here.

(We do have a tape player we took when we talked with the surgeon after the initial surgery)
Posted 4/16/2007 6:55 PM (GMT 0)
Ruby

This is definitely a club that no-one wants to be a part of...but I can tell you from experience that I've found much support and good advice here.

I'm Canadian, and so our health system is set up differently, but I have discovered that the common theme is being informed. I found taking a tape recorder or taking a friend all made retaining the information that much better. I spent HOURS on the Internet - and scared myself silly (too much information and too little reliability). I ended up talking a lot to my GP when I first started this journey, using the forums I found for advice.

As for mastectomy, because of the type of cancer I have (inflammatory breast cancer), the specialists wait until AFTER treatment to do the surgery (so I've done chemo and rad, and surgery scheduled for May 1st). All I've wanted from day 1 is the breast removed - I wanted the cancer OUT of my body and as far from me as possible. Having had to keep the affected breast the whole time has been hell mentally.

And now that I'm at surgery, I'm opting for a bilateral mastectomy. I found lots of information about posture and potential physical problems associated with heavy/dense breasts when only one is removed.

I still don't know how I'll feel about the girls being "gone" - I'll know soon enough. Mentally it's the right choice for me. Emotionally - stay tuned!

Hugs to you. My thoughts and prayers are with you.
Posted 4/23/2007 3:20 AM (GMT 0)
I hate to be negative, but I'm having some very black days here.  I just cannot see any light at all.  I've got a "friend" who decided that this would be a good time for her to share about her breasts and she's written me a series of long letters confiding to me how she got these breast implants that she hates, that they feel so unnatural and on and on.  She even sent me a picture  of herself in a tight shirt.   I cannot believe how unsensitive people can be.  I feel like sending her copies of the images I've been looking at online of mastectomies and telling her to be darn grateful she has breasts and no cancer in them.  This is so unfair and I've been crying for days now.  I don't know what this person was thinking and it HURTS.  It's bad enough that I'm going through the physical and emotional pain I am right now, but to have that piled on me at this time just infuriates and depresses me.   I hate this.  I was trying to work through things, come to some acceptance, but GRR.   It's easy enough to say, just ignore her letters, block them, mark them as spam, but it doesn't delete the memory or the hurt.  I'd almost like to go see a therapist, but I'm afraid they'd lock me up and throw away the key, truly.  I'm sorry but I had to get this out somewhere and now I don't even feel I can journel about it.  I hope you people don't take offense to this - I'm really not trying to hurt anyone.  I just don't know what to do with these feelings or this hurt. 

(I had a link to this forum on my journel but I've deleted it because I don't want her to see this post if she's looking around there.  I'm almost ready to delete the journel because I just feel so lousy about all this)

Posted 4/23/2007 3:34 AM (GMT 0)
Ruby-
First, let me offer you a tremendous hug...and another. We have all been where you are, and for what it's worth, your feelings seem perfectly normal. The days after my diagnosis were the most frightening, overwhelming and angriest of my life. You WILL get through this, there is simply no choice. Allow yourself to feel what you are feeling, painful yes, but let it happen. Focus on what you can do, take charge of what you can take charge of. Reading, researching, writing, comparing notes....all things you can take control of. Reading her emails...you can take control of that too. Most of us can tell you a story, in fact I think one of our beloveds named it "The Golden Boob" award to the most insensitive and idiotic thing that someone else did or said to us.

My hunch is that your "friend" was trying to join you in your anger by sharing her horror story with her boobs too. No comparison, we know...but to her, and it may be "all about her", but I bet that she was trying to show you too how boobs are not all they are cracked up to be. One suggestion is to email her back and simply let her know that while you know she is suffering in her own way, you feel that her issues are just not relevant for you at this difficult time and in fact, that her emails are adding to your distress, and that you will contact her when you are up to it.

As for a therapist, go for it. Depression is pretty common with a diagnosis of cancer, and not sure they will lock you up...but if your feelings become so overwhelming and life consuming, and last for more than a week or 2, it may be time to seek professional help. No shame, just that some people need a little help now and then.

Give it time, you will come to acceptance...try to set reasonable goals. It may not be reasonable to "be over it" tomorrow, but try to replace the crying with a constructive activity. Or if you cried for 2 hours yesterday, maybe tomorrow can be less. Set a realistic increment to try and reach, but do allow yourself to feel what you feel.

Hang in there!
Lori
Posted 4/23/2007 3:38 AM (GMT 0)
Ruby

 

Im sure I won't be the only one to tell you that being diagnosed with cancer brings out some strange things in people. She might feel like she is helping but have NO idea of how hurtful it is of someone to talk about their breast implants when you are going thru this. I know that it it not easy to turn the other cheek when you would like to slap hers, but she probably means well. I would suggest that you concentrate on your well being and try not to let her get under your skin. When you are diagnosed there are people who will surprise you by becoming closer but others who walk away, just try and make the best out of it.

 

As for dark days let me tell you that all of us on this site have had our share of them, being diagnosed makes you really look at your life in the brooder picture. we all get together and have pitty parties every once in awhile and it is OKAY. We can understand just about any emotion that you have.

 

Please take care and keep posting there is something so clensing about talking to others that have been/or going thru the same thing.

 

L&H

Bernadette

Posted 4/23/2007 4:24 AM (GMT 0)
Dear Rubyshooz...
I think I mentioned previously in a post to you that I lost some important (I thought at the time) relationships because of my cancer diagnosis. That was very hurtful. Well, I was born and raised in Smalltown, USA, and my mom took it upon herself to tell everybody and their sisters that I had cancer, gave out my phone number like beads at a Mardi Gras party, and my phone rang day and night with phone calls from people I hadn't seen or talked to in 15 years, many of whom I hadn't even been friends with since grade school. I felt like a circus sideshow, and it really made me mad (livid, to be more precise) that these people would actually call and want to hear all about "the cancer." I felt like a freak, and all I wanted was to feel "normal." In retrospect, I realize that they were just trying to be supportive and caring and had no idea how their intrusion into a very difficult time contributed to my feeling that my world was tilting wildly and that "control" was a concept I would never grasp again. I know, too, that my mother meant well and was only sharing her grief with anyone who would listen. Your friend is probably feeling very guilty about her "enhanced assets." The picture...well, that is just tastelessness.

I don't blame you for not listing this site on your journal page. We all need a place that we can go and vent without our friends and family reading everything we have to say (believe me, we all vent about friends and family here!)

I am so sorry you are having a rough time, but we have truly all been there. I don't know anyone here whose world was not rocked to its very core by the diagnosis of "cancer." Time is a great healer, as euphamistic as that may sound. So hang in there. It may not be better tomorrow, but one day...

Take care.

Hugs...
BEV
Posted 4/23/2007 11:24 PM (GMT 0)

Dear Ruby,

My name is Dan and I live in the Chicago area. In March I had a high PSA and then a biopsy. All 12 samples were normal. Waiting for the findings is very hard, as you know. In April, Deb, my 47 year old wife, was diagnosed with non invasive lobular cancer in her left breast. The MRI, bone scan and CT scan indicated no cancer anywhere else. She has a terrific surgeon and will have her first visit to her oncologist tomorrow. I created a blog for her too. http://debharrell.blogspot.com. I hope you find it interesting.

Dan

Posted 4/24/2007 12:43 AM (GMT 0)
Dan...I peeked at your blog, and it is very nice. Your wife is a very beautiful, spunky looking lady. And what a great way for you to be involved in her battle with our nasty disease. My brother was diagnosed with prostate cancer a few years ago. My grandfather and father both had very high PSA counts, but never developed prostate cancer. I hope the same will be true for you.

Take care, and thanks for sharing.

BEV
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