Discussions

 I was just diagnosed with invasive lobular carcinoma on Monday 6/15/09. I am still in shock and prone to bursting into tears if you just look at me. I have an appt with an oncologist at 8am in the morning and I'm scared to death. My husband thinks we are just going to walk in the door and they are going to answer all our questions then and there. I know I will have to have more tests. Mine was found on my yearly mammogram last week. I was fortunate that they did the core needle biopsy the same day and I got the results quickly.  I still don't know the stage, but it is <1cm in size so I hope that is something in my favor.

I would like advice on what to expect on the first visit. I glanced at some of the posts already and it seems like everyone is very caring and helpful. So, I guess I am reluctantly joining the club that no one else wants to be in either. 

Hi hun I am sorry you had to join too, but you are more than welcome. We have some great ladies here, and between all of us, there isn't much we can't answer. You can come here and cry on our shoulders, or just vent and get anger out. We will take you by the hand and help you through this journey. You will be surprised how much you will learn at that first meeting with your onco. He should the kind, grade and what stage you are in. He is going to lay verything out for you about what treatment he recomends for you. It's not an easy journey, but you will make it like all of us have. So when things get too much for you, you come see us.We are open 24/7, you and women like you are our first prioroty. Honey we can answer questions the doctor's can't, because we have lived it. We either were there, are there, or going there. So I speak for all the ladies,   we extend our hand is friendship, so when you need us we are here for you. I will keep you in my prayers.

Cajun Lady 

 Robin, I found the hardest part of this disease was the waiting. Waiting for an appt, waiting for a test, waiting for results, waiting, waiting, waiting! So just take a deep breath and try to relax. Make sure you always bring someone to your appointments, especially in the beginning. You are still in a state of shock and you will not be able to remember everything they say. Take notes too. It helps to be able to come home and look up terms and procedures online so that you can become more familiar with it.

So welcome to our club. None of us wanted to join, but it makes it so much easier to travel this road with such wonderful support! Know that you are in very good company. I will keep you in my thoughts and prayers!

Hugs and Blessings - Sharon

Robin, an unfortunate welcome to our club. Know that we are here for you no matter what you need, a place to vent, a shoulder to cry on, a hug, and even an occasional kick in the pants. One thing when you go tomorrow is always get copies of all your pathology reports. That will make it easier for you to look up things later that you didn't understand in the doctor's office. And write down your questions. Don't count on your memory to remember them, because the shock will interfere with that. Right now is the toughest part, all the waiting. Once you know what you are dealing with, and you have a plan of action, you will feel a little more in control. I wish you luck tomorrow. My prayers are with you.

Another Robin 

 I also got a lot of information from the American Cancer society.  They have booklets with information for you to read. They also gave me a mastectomy bra. The will provide a wig if I need it also. I had may mastectomy on May 4.  I am still waiting for tests results and analysis to know if and when I need chemo. Waiting is hard!  I have an appt. with my oncologist on July 2. (That is my 15th wedding anniversary)  I hope the best for you!

 Hi Robin,

You got great advice from all the ladies here. The best thing I did was write down questions for each appointment and asked my daughter and boyfriend if they had questions and added those to the list.  Also made sure I had someone with me. 

The mistake I made was thinking I could go it alone. It was 6 months before I found this website.  It was great to learn others were going through the same symptoms physically and emotionally as I was.

So be sure to keep in touch at all times. This is such a warm, caring group.

Blessings,

Crismatic

 Hi Rockin Robin. Early Detetion is so important and since you have been having your mammograms and are so quick with your biopsey it can only be in your favor. Dont think any of us will forget the day we ere told we had breast cancer. Your emotions will be everywhere. Everytime I seen a doctor I was handed a booklet on breast cancer I was too scared to even read them. I didnt want to know it scared me worse. I just told myself Ill do the praying and you doc do the doctoring I wasnt even sure I was asking the right kind of questions when I did ask. So take a deep breath hold out your hand cuz you have freinds here!

 Hello everyone,

thank you so much for all your responses and kind words. I have seen my oncologist and surgeon. I am scheduled for surgery on 7/14/09 for a lumpectomy. Pending nothing found in my lymph nodes, will have radiation for 6 weeks and start on tamoxifen.  So, what can I expect from radiation and tamoxifen (side effects) I am 45 years old and pre-menopausal. I really appreciate all of your help, guidance and support. 

Robin, let me welcome you to this group of "Elite Women"... sorry  you had to join, but you have friends and we are all family....  You have your back sis...... 

The radiation is differant for all.  I had no problems with it... just a pain going everyday... you'll need to really take care of your skin with what ever your doc suggests (mine was aquphor)...  it would not hurt to start now with rubbing it on the area and just getting ready...  I did really well with the rads... just very little blistering and a few little itchy bumps....

Now the tamoxifin... some of the other gals would be better to talk about it... I had terrible side effects and had to quit taking it.... i gained 25 pounds in less than 2 months..... but others have lost weight on it.. so it too is differant from all... my side effects were more than tolerable... i was not only mean....... i was evil (and that is not my nature).... so i am off of it....  Ask anything you need to... we are all in this together.... holding you hand gal.... big hug from mississippi... bj

 Robin, before you start radiation you will go in and they will take xrays and stuff to gauge exactly where to do the radiation. They will put little tattoos on you, which are merely pinpoints, not too bad. I got 5. The radiation itself will be easy. You go in, take your shirt off, they lay you down and set the machine to zap in the right places, and then they do it. You don't feel anything.  After a few weeks you may start to burn, so they will tell you to put some cream on. I got a great recipe from Cajun Lady that I use 3 times a day. Its Eucarin Cream, Aloe Vera gel with Lidocaine, and Vitamin E oil. I use it religiously, and now I've had 4 weeks of radiation with no problem other than getting tired. It will fatigue you. You will need to rest when you feel tired.I can't help with the Tamoxifen, as that's not my regimen, but I'm sure other women will be on to advise you.

Robin

 Tattoo? Like a real tattoo? And what is the recipe for the skin lotion? How much of each item? 

 Robin... my tatoos were kinda like ink and they eventually faded... some are actual tatoos and may last... but it is not bad...

Hi sweetie, it's just the size of a freckle, I just got mine.OK here's the recipe, I got it from my cousin who's a rads tech.

5 parts Vitamin E Cream

5 parts Aloe Vera Gel With Lidocaine (in suntan lotion part of the store)

2 parts Eucerin Cream 

Make sure none of the ingrediants are oils, they have to be creams

Use after each treatment, but make sure none of the cream is on the skin before treatment. Wash your chest with soap and water before you go for treatment.

Put it on several times a day after your treatment, keep it in the fridge.

  Cajun Lady.

hit the wrong.. key... it would just be like a little dot...  that is all... with the ink they used for me.. it was differant colors... my hubby said i looked like a decorated indian going to a wedding.... so he named me "ONE TAN-T I T".... just gotta keep the humor going!... bj

 Talk to your oncologist about the recipe first. I got approval for Vitamin E oil, as I couldn't find cream. So I changed the recipe for myself. I use 5 parts Eucarin, 5 parts Aloe Vera gel, and one part pure Vitamin E oil.