L & H,
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
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
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
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
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
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
L & H,
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
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle." -Albert Einstein
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
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
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
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
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
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
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