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Posted 7/22/2005 2:35 AM (GMT 0)
Hi Bernadette, saw your post from a few minutes ago, under the roll call. So sorry that you have had to join the club, but we're a pretty ok bunch to hang with. These first few weeks are a whirlwind of activity, learning, reading, crying, getting tests, appointments, it is quite a bit!  My advice is to take a tape recorder to these appointments, so you can ask your list of questions and then hear the repsonses later when you need to.  And don't make any quick decisions, take time to research and make the right choice for you.

No question is silly, so ask us anything, we're here for you!

Lori

Posted 7/22/2005 3:15 AM (GMT 0)
Welcome, but sorry you have to be here.  I, too, am 45 and was diagnosed with infiltrating ductal carcinoma last Sept.  I had only 1 lymph node involved, thank goodness.  I had 5 months of chemo and about 7 weeks of radiation.  In fact, I have only 6 more rads to go.  My tumor was quite large - 6cm, but the tumor markers are now well below the normal range, so my onc declared me a graduate last week!  This is doable, even though now it seems so overwhelming.  I certainly remember the feeling at the beginning.  I and all the ladies here will help you through.  They have been a wealth of support and information to me!  Please don't hesitate to post or email me if you have any questions or concerns.  And also, keep us informed of your progress.  That is very important!
Posted 7/22/2005 3:18 AM (GMT 0)
Hi Lori
Thank you so much for replying. I understand what you are saying about the whirlwind I have almost had it and Im just starting. I had a CT scan yesterday and my doctor called to sya I need to have a pet scan because there are some lymph nodes that are larger than they should be. This has all been so quick and I guess wasn't ready for the work load that comes along with your diagnoses. I really like your idea of taking a tape recorder because I cant always remember all of what was said. Tahnks again for being there.
Bernadette
Posted 7/22/2005 3:31 AM (GMT 0)
Kathy
It is great to talk to someone the same age as Iam. I have been very overwhelmed by all of the things I have had to do, the appointments never end. I just want to get my surgery over so that I can start to get better.
Thank you for being there
Bernadette
Posted 7/22/2005 4:25 AM (GMT 0)

Hello Bernadette! It is nice to meet you. I am so glad that you found us. This is a wonderful group of women. Together, as a group, I doubt that you can ask a question that at least one of us will have the answer to. Hearing the word "cancer" puts your system into shock. It is so frightening. As Lori said, you will experience so many different emotions these next few weeks. Don't be afraid to cry or be angry or yell and scream. (The shower or car are great places to do this) You didn't say if you have a support system. Are you married? A couple of other things that you might want to do before and when you go to the dr again is...(1) Keep a tablet close and write down all questions that you want answered. No question is to silly to ask. (2) Take another person w/ you when you go for your appointment. As you said, there is so much info thrown at you that there is no way that you can remember everything. With the aid of your tablet w/ the questions, your tape recorder and support person, you will be able to review and remember what was discussed. The PET scan is an easy test. You will be injected w/ a radioactive tracer and will have to sit quietly for about 30 mins. Then the test itself is similar to the ct scan. It is painless other than having to lay in one position for awhile. The PET scan will give your drs a more indepth look at everything. Almost like a 3d view. No real side effects. Just drink plenty of water afterwards to help your body get rid of the injection.

Please continue to post here. Your friends and family I am sure are there to help you but they don't understand everything that you are feeling and thinking and going thru.

hugs and prayers....Deb

Posted 7/22/2005 11:55 AM (GMT 0)
Hi Bernadette, We all do understand the whirlwind. And we all understand the "waiting". Things do even out, some are involved in more treatments than others, but we can all hang together here and offer support and concern. Please make yourself at home and ask any question, vent if needed, we even allow pity parties which we will understand. Hugs, Mary K (MK)
Posted 7/22/2005 12:46 PM (GMT 0)

Bernadette, you are right about the "workload". It is amazing....I remember when I went for my 2nd opinion, I had to run here and there to get copies of slides, films, take more tests, etc. And when I was all finished and a few months out, my position at work ended due to loss of a contract....so I was interviewing for another job and I felt like putting cancer on my resume, as it sure felt like a full time job in addition to my job and house and other daily duties!

As for age, we range here from 30's to 60's or so.....you will likely find a lot of peers here, which is nicer than a real live support group where they tend to be older.  I was diagnosed at 30, and now am 36.  We have seen gals in their 20's here too, amazingly enough. 

Where do you live? We are from all over the US, (even one in New Zealand!) with a bunch in Michigan, Ohio, NJ, and Texas, but really all 4 corners of the US are represented  here!

Welcome again!

Lori

Posted 7/22/2005 2:24 PM (GMT 0)
Hi Lori, Deb, MK and Kathy
I am so glad that I found this site There are so many woman going through the same thing or have already been through it. Iam amazed at so many young women that are in their 30's. If I would have been diagnosed in my 30's I would have really freeked out. I tend to be on the impaitient side when it comes to waiting for all of this to get going. I was only diagnosed a week ago but I want to get my surgery over so that I can get on with treatment. How many of you have been diagnosed with infiltrating ductal carcinoma? I have read alot of the bios and almost all with my diagnoses have had chemo too. I know I have to have radiation but wont know about chemo until after the surgery. I really dont want to have chemo because of the chance of loosing my hair. (dont I sound vain)
By the way I am married have 2 grown children 26 & 20. I live in the Seattle area. I have the most amazing husband who is so supportive in all of this. He lost both of his parents to cancer so he understands alot of what I have been going through. Sorry to ramble on so much but it feels good to talk to people who understand. I started a journal so that I could keep track daily of my progress. It feels great to write down things that bother me. I had a ekg and the tech was very cold and uncaring he opened up my gown and just left my breast exposed during the procedure, I finally just grabbed my gown and covered myself. It made me feel like a cow being herded off to auction. That was the first time I cried since being diagnosed It really upset me. I would love to hear more about all of you and thanks again!
Bernadette
Posted 7/22/2005 2:36 PM (GMT 0)
Hi again I forgot I had a question for everyone. I have read alot of your bios and it sounds like most of you had your breast removed and had reconstructive surgery. I dont know if I have made the right decision or not to save my breast. My tumor is just over an inch in size. My surgeon says she is pretty sure that she will be able to save all of it. I need to know if Im making the right choice. Any and all advice greatly appreciated :)
Bernadette
Posted 7/22/2005 2:59 PM (GMT 0)
Bernadette-
Gail (postal) lives in Washington, you will probably hear from her too...
My tumor was 2.5 cm, which is 1 inch, and I had a lumpectomy with rads. Back in the old days, any tumor over 1 cm was pretty sure to have chemo, mainly as a precaution. But now there is a new test that predicts the chances for recurrance and some people get to skip chemo that would have otherwise had it, we have a few gals here who were lucky enough to benefit from that test.

As for the type of surgery, no one can tell you what is right. Some people do not get the choice, based on the size or location of the tumor or tumors. In my case, I did have a choice and chose to keep my breast too. Others just want the breast removed no matter what. Personal decision. You can always have a mast later, but if you get a mast and have regrets, you are stuck. That is why I encourage you to take time to decide on the right approach for you. Others may skip the conservation because they know it will need rads, and they cannot make daily trips for 6 weeks if they live 2 hours from the cancer center.

Chemo is not that bad! Yes it is not fun, and you will most likely lose your hair and you are not being vain! That was very traumatic for me and many others, but then life goes on....losing it was terrible and then I was fine about it, just wanted to live my normal life. Which I did, I worked full time, missing only a couple days each chemo cycle. I was not sick and had a relatively easy time with it, it really varies from person to person, quite a bit.

And I was like you too, let's get the show on the road! Most of us feel pretty empowered after the fear goes away, doing active treatment and actively fighting. There are a lot of survivors out there, and no reason that you won't be one of them!
L&H,
Lori
Posted 7/22/2005 5:27 PM (GMT 0)
My first surgery was a breast conserving surgery, even though the tumor was 6cm.  The problem was the cancer was growing along the blood vessels and there were smaller tumors throughout, so I had a second surgery 3 weeks later, which was a simple mastectomy.  My surgeon never discussed what if's with me before the 1st surgery, so I suggest you have this discussion with him/her just in case.  The actually breast surgery wasn't that bad.  It was the lymph removal that caused most of the discomfort.  Hopefully, you won't need that, but be prepared.

 

I thought at the time I wouldn't want reconstruction, but now, after wearing this heavy prosthesis, I may reconsider at some time in the future.  As Gail said, chemo isn't really that bad.  Losing your hair seems to be the worst part of this whole thing for many of us.  I got a really cute wig and was blond for 5 months.  Now, my hair is back - short, gray & curly!  Everybody loves it, except my husband.  LOL

 

I had a PET scan towards the end of chemo, just to be sure it hadn't spread and I came up clear.  I also had a CT as part of the radiation treatment plan.

 

Please keep posting here and you will get great advise. 

Posted 7/22/2005 10:37 PM (GMT 0)
Hi Berandette-
I was diagnosed with invasive ductal in Mar of this year. My tumor was 1.9cm, and my surgeon suggested lumpectomy. Cosmetically I'am happy with the outcome. My surgeon explained there wasn't much diff in mast or lump-I think it was around 2%. I found out afterwards that Iam her2+, and that may have made me go for bilateral-but no looking back now.
Losing my hair was not as bad as I thought it would be. In fact I'am more bothered now as I only have one chemo left.I have recently really begun to miss it. I had long hair, and found it easier to cut shorter a little at a time.Try to wig shop before you need it ,and find one you really like.
Every step I seem to be copeing with this better. Keep your head up.
Best wishes
Michelle
Posted 7/23/2005 1:22 PM (GMT 0)
Hi, there is also Jean in Wa who is in your area. Watch for her posts and check in with her.

As to whether or not to have a mastectomy, here is my two cents worth. I am older, now 66, and in my generation cancer was always a real hush, hush threat. When I heard I most likely had breast cancer, I signed the papers for the surgeon to go ahead and do the mastectomy then and there. It turned out that my cancer was Stage 0-1 and there is no reason in this world that a lumpectomy would not have been sufficient. Because I had the mastectomy, tho, I did not have any chemo nor radiation, but I was 58 years old, too. My daughter was dx at 39 and because of the location and size of her lump the doctors felt she needed a mastectomy. She also had chemo because she was young, they said more as a preventative. We are both doing fine, nearly nine years for me and over six for her. So, my suggestion is you follow the doctor's advice with the lumpectomy and get the staging and information about the tumor first. You can always have a mastectomy if it is advisable.

At any rate, the decision is yours. Altho losing your hair sounds awful, and I am sure it is very difficult, the women I have met without hair look beautiful with a radiance. Did you happen to see Melissa Etheridge when she performed bald, how beautiful she looked?

Hugs, MK
Posted 7/23/2005 6:49 PM (GMT 0)
Hi Michelle, Lori, Mk & Kathy
I have a question for you, what is her2+ that you mentioned in your letter? I had my pet scan yesterday and the tech scared me when she mentioned the Dr had made a note to her to get a good look at the right lung. Now Im worried that it has spread there too. I told her that the pet scan was supposed to rule out some larger lymph nodes but she didnt have any info on that. This is the part I hate the most WAITING I can handle what they tell me but I wint know anymore until after surgery on Monday. Michelle you did not mention if your hair is back or not. MK you mention that you daughter has had breast cancer too, and that you both are cancer free now that is great. My daughter is only 20 but she is aware of her chances of getting it and does her self exams even before I was diagnosed. My family history contains only cancer deaths nothing else so my chances were great that I would get it too. I lost my own mother when I was 28 she had lung cancer. I like the idea of cutting your hair before it all falls out I think that would be easier.
I know I have talked alot about loosing my hair but I remember my mom saying that was the worst part of the treatment. She couldnt stand to wear a wig so she wore bandanas instead. I work full time with 20 men they have been so supportive and worried about me. I took the last 2 days off to prepare for the surgery. How much time did each of you take off after your lumpectomy? My Dr suggested 3 weeks if I could take it. I do have to have some lyph nodes but I wont know until then.
Okay I have rambled enough for now. I hope all of you know how much I appreciate the support.
Thanks again
Bernadette
Posted 7/23/2005 8:18 PM (GMT 0)
Dear Bernadette,
Just wanted to welcome you as well and to thank you for replying to my post from the other day. As you can see, you'll get a lot of great support here and really practical, good advice from women who've been thru it all and can relate their experiences to you. That has been so helpful to me, I know you will find it encouraging and supportive too. I was dx with invasive ductial carcinoma too, 6 years ago when I was 30 years old. My tumor was just over 4 cm and I had a lot of positive lymph nodes, so I guess a lumpectomy wasn't really an option for me. Incidentally, I did have a lumpectomy when I was 14 (yeah, 14, I know, long story) and in retrospect, I'm so happy I had such a compassionate and intelligent surgeon who had the insight to do a breast-sparing surgery on a 14 year old girl instead of the standard mastectomy of the time. My scar was so small even though my tumor at the time was huge (about the size of a lemon). It saved my from a lot of emotional trauma, I'm certain.
But I did end up having to have a mastectomy at age 30, and oh how I wish I had caught my cancer earlier and could have kept my breast. Once its gone, its gone, and even though I had reconstruction, it just wasn't the same. I didn't have good success with my implant and had to have it removed. I wear a prosthesis now, and I'm always so self-conscious of it. Always tugging at my bra straps and adjusting myself to make sure I'm not slipping out of place.
I know you'll make the right decision...the one that's right for you, but I just wanted to share with you my experience. Losing your hair is hard, there's no disputing it, but it will grow back. If it appears you might have to have chemo, remember its temporary. You're breast won't grow back, so just make sure whatever you decide, you're confident in that decision and its something you can live with.
My thoughts are with you. Please post again to let us know how you're doing and what you and your doctors have decided for your treatment.
sending best wishes to you,
Tracy
Posted 7/23/2005 9:08 PM (GMT 0)
Bern-
It depends on what kind of work you do as far as taking time off for surgery. I took no time off for the lumpectomy, just that day. It was easy, but I have a job in an office with no heavy lifting or anything but typing. I took a few days off for my lymph node surgery. See if they will do a sentinel node biopsy first, it potentially can save you from having more invasive and more painful node surgery. I had very little pain from the surgery itself, but it takes a while to regain motion. I used to sleep on my right )surgery was on left) and prop my arm on a pillow to keep it from hitting the sore breast, and it worked great.

Her2 neu is an oncogene, sort of a protein that can be overexpressed in some breast cancers. They will test yours for it. Positive can mean more aggressive, but it also means that there are targeted meds that can help you a great deal if you need it.

I also cut my hair before it fell out. I waited till the weekend before it was supposed to fall out and had it shaved. It was more comfortable, but I could not face losing my hair, so I had it cut off on my terms, and I was in control. It was the hardest thing I did, but made my experience better I think.

Take one step at a time, and yes, waiting is the hardest part. Once you know the extent of the cancer, you know what you are fighting and you'll go into attack mode. Getting a treatment plan is so empowering...in the mean time, hang in there!
Lori
Posted 7/23/2005 10:46 PM (GMT 0)

Hey, about that Her2neu. Maybe some of you can explain mine to me, because I am not sure I believe the DR. There are 2 tests for Her2neu. IHC which is cheap and done for every BC patient. I was 3+ positive and according to my onco I would probably quality for a special study so I volunteered for the Herceptin study. To qualify, they ran the FISH test. I do ot have gene replicaiton so I did not qualify for the study. My onco said that about 10% of the positive IHC patients would be negative on the FISH test. She said my FISH neg improved my prognosis. Has anyone else had any experience with this study, test, etc?

JUJU

Posted 7/24/2005 5:11 PM (GMT 0)
Juju, that is a good question. To get more replies, you may want to start a new thread and include Her 2 or FSH test in the subject line. That will catch the attention of those looking for info or those who wish to reply. This question is sort of buried in the thread, and starting a new one may help.

I have no information, other than knowing that there are different numbers for Her 2. Mine was either a 3+ or 2+, I think it goes up to 4+. But I am not sure....

Good luck!
Lori
Posted 7/24/2005 11:25 PM (GMT 0)
Just want to add my welcome to the newbies. Sorry you have need to be here, but you could not find a better, nicer place to be at this time in your life. Hugs, Lauri
Posted 7/27/2005 2:58 AM (GMT 0)
To all of my new friends

I made it thriugh my surgery yesterday. I had the lumpectomy and 7 lymph nodes taken out. Surgery went smooth but I have no answer on the lymph nodes yet. Probably will have an answer by tomarrow. I had an easy time with all of it except the dye for the sentinel node that was a little painful. I will be starting rads in about 2 weeks. I will keep you posted on my results.
Bernadette
Posted 7/27/2005 7:54 AM (GMT 0)
HI Bernadette, I am just now catching up on a lot of the posts. Welcome! I see you have had lots of advice and hello's! It is a great bunch here, as I am sure you have realized. Good to hear you made it through your surgery. I will say a prayer for negative nodes for you!
I live in Eastern WA, in Kennewick. Jean of WA also lives here in Kennewick. We haven't had a chance to meet yet as I was on a 2 month trip and just recently got back, but I hope to meet her soon.
I had a double mastectomy, one at a time, one being prophylactic.
I had my final reconstrution done by a wonderful plastic surgeon near you in Mountlake Terrace. You have some very good Drs in your area!
I did not have to have chemo or radiation.Ichose tohave the 2nd breast removed as I had invasive lobular and it ofter mirrors itself in the other breast. I was fortunate to have found mine early and I had neg nodes.
Keep us informed on how you are doing. We will be with you all the way. L&H, Gail
Posted 7/27/2005 1:01 PM (GMT 0)
Hi Bern-
Yes, that SNB procedure is tough! The radioactive injection was very painful, thankfully it was over in a few minutes.
You are starting rads soon? Do you already know that you do not need chemo? Whatever the outcome is, we'll be there to support you!

And if you see pink feathers (imaginary or real!) wafting down, you know we are there. We have a cyber airline called Pink Cloud Express (PCE). We can board at a moment's notice and fly anywhere in a few minutes...so when you need us, just send a post to summons the plane. Joyce is usually the pilot, sometimes others fill in when needed. We usually fly wearing pink, especially pink boas....so the boas tend to drop feathers and that is how you know we're there!

Lori
Posted 7/28/2005 2:16 AM (GMT 0)
Hi Gail & Lori & lauri

Thank you so much for writing to me it really has helped to find people with similar problems. In answer to your question Lori I only know about the radiation tratments until they have the results of the lymph nodes. I have a feeling I will be doing chemo too don't ask me why but I just do. I just want to get started and get it over with.
Gail you live in Kennewick? Im from Wenatchee and have lived over here for 5 years now. You said that your Doctor was in Mountlake Terrace. My Doctors are in Edmonds which is right next to Mountlake
Terrace. I actually take the MLT exit off of I5 to go to my Dr.
Lori I had to laugh at your pink boas story that is great. Ill keep my eyes posted for pink feathers. LOL
Thanks again to all of you :)
Bernadette
Posted 7/28/2005 2:36 AM (GMT 0)
I have another question for all of you. If you are scheduled to have rads and chemo which one do they usually do first?
Thanks Bernadette
Posted 7/28/2005 2:08 PM (GMT 0)
Hi Bernadette, I think it is time to start a new thread here, your question above will be lost in all the other posts. LOL. I missed the fact you had posted after surgery. It sounds like you are doing great. And I don't know much about WA state but it seems like there is a chance you could meet up with Gail and Jean when you are up to it. I have met Gail a couple of times and she is a really great lady. Take care and rest and heal. I think but don't know from experience that usually chemo is done before radiation. It seems that is how most of our breast friends treatment seems to go. Hugs, MK
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