Newly diagnosed, so many unknowns

Moonchild

I was diagnosed on 12/26 after a needle biopsy following a yearly mammogram which showed an "area of concern." Having been through the same thing last year, with a lumpectomy showing atypical benign results, I was quasi-prepared for bad news. But I suppose that even thinking you are ready for the bad news is not even in the realm of the believable, once you really hear it. Right now, I am in a state of vacillating panic and calm, because I don't have enough clinical information yet. The only thing I really know is that I have invasive lobular cancer, and that the doctor believes it is Stage !. What I don't get is how she can even say that before doing the lumpectomy and the lymph node testing? I know the prognosis is supposedly good at this point, but I know I will have to go through six weeks of radiation; the decisions on chemo are pending.

This will be my fourth lumpectomy; I suppose I have been lucky so far. The weird thing is that I have always felt instinctively that I would get breast cancer. It turns out that my paternal grandmother had breast cancer; I've known that for years. But I just discovered that all four of my paternal grandmother's sisters also had breast cancer. So my doctor thinks I should get genetic testing to determine the mastectomy option, for prophylactic reasons. But what about the ramifications of genetic testing on health insurance?

The worst part, actually, was the anticipation of telling the kids, which we did last Thursday afternoon. I was terrified of telling them, I was nauseated and couldn't eat or sleep. My mom actually told them; I knew I couldn’t get through it without breaking down. My daughter immediately began crying hysterically, and my 13 year old son just looked stricken; I’m sure he has yet to assimilate this, and that there will be many days of questions yet to come. I obviously haven’t said anything to the kids (and don’t intend to) about the genetic testing part; my 16 year old daughter certainly doesn’t need to hear this at her age, since it will have an impact on her as well.

I'm having problems falling asleep, and all my dreams seem to be related. I know this is an unconscious outlet, but I'm exhausted.

Susan956

Dear Moonchild....

Sorry for your need to be on this board. While we can not give specific answers we do understand the panic at first learning that you have cancer. Typically the Doctor can get fairly close prior to doing the lumpetomy. (Mine was expected to be a 2A and became a 2B. All I can say is get a good team of Doctors that you trust and then make sure that you are your own best advocate. Kids normally calm down when we manage to get our emotions in check. My son did much better.. when I told him I was too mean to let something like this kill me.... After a couple of tense weeks... he started to believe it... and became a great supporter rather than someone that I had spend energy calming down. You will be amazed how well your kids will do. The reality is that breast cancer is very treatable... and you will make it through this bump in the road of your life.

So try to take it easy on your self and take it one day at a time as you get more information. You will have good days and bad days... but most all of us make out OK in the end. just a few bumps and bruises along the way.

Take Care.... God Bless....

Susan

jamilli

When I found my lump and was at your stage of not knowing just how good or bad it was, two people got me through it. My husband told me, " I was going to be all right" and a physician on a web sight said that "no matter what the cancer is, there is a treatment for it."

The point of it all is that you need to be surrounded with positive emotionally helpful people. You need to let them be there for you. I had two doctors tell me before they knew anything that they didn't think my lump was anything to be concerned about. They, like your doctor, were just trying to be positive and they didn't want me to freak out.

It sounds like you have a very supportive family. The kid part is a totally different thing. In a way I was lucky mine are so young and don't really understand. However, my 6 year old daughter did not want to have anything to do with my tears and anxieties, she just wanted me to be mom. She made this very clear and it was very helpful.

Be strong and surround yourself with positive thoughts and be diligent with your health care providers.

You are going to be okay.
Jamilli

24242

I am sorry you have been going through such a difficult time. It isn't easy having to deal with all the unknowns.
You have said that your daughter doesn't need to concern herself with this at her age but in fact this very thing might go along way to saving her life someday. I was only 6 when my paternal grandmother was going through her cobalt treatments back in the 60's and that impacted my life and gave me the ability to fight for the help I needed to get a diagnosis of breast cancer that doctors were reluctant to give since I was too healthy, too well built too athletic at the time. I had done examinations of breasts since a very early age so found the lumps very small. That is what is necessary to be able to find cancers at early stages with young women. I guess I would like you to consider giving your children the best chance at life that they may have. Good for you for being on top of it all and to your doctors for having their eye on you because that is what is needed to beat such a disease.
My thoughts are with you all,
Be good to yourself always,
Tara

LesleyH

Welcome, and I am sorry.

The truth is your doctor cannot tell the stage until after the surgery. Mine said I was Stage 1 or 2A and I was Stage III. But one step at a time. First they will do the surgery and then make decisions as you need them. Often with lobular, a bilateral mastectomy is suggested because lobular often occurs in both breasts and is so hard to see on the mammogram.

As for genetic testing, I would say that if you are under 50, you should go ahead. If you are under 50, the diagnosis of BC is going to affect your health insurance anyway - for you and your daughter. It could save your life because it will suggest treatment options.

Good luck.

Warm New Year hugs,

Lesley

susabella

Welcome, Moonchild,
You've found a wonderful support group and I'm so glad! You will find many friends here who will try to encourage you and ease your fears. I am 8 weeks post-mastectomy (bilateral) due to DCIS and LCIS. Because of an extensive family history and being premenopausal, a mastecomy was the choice for me. My mother died 12 years ago at 56 of BC, her aunt died from it, my paternal grandmother survived due to a mastecomy at 40, but her sister died at 38 from BC. Both sides of the family, so I will be getting the genetic testing. I will wait to talk to my daughter about this till she is a bit older as I don't want her to feel that it is inevitable for her. It may not be, but it could also save her life and let her have choices when she is ready. Fortunately in Massachusetts, many of the privacy laws will help protect my ability to be insured. Like you, I have 2 children, a daughter, 17 and a son, 15. Telling them was the hardest part. I had been fairly open with them, as it took me almost a year to get an accurate diagnosis, 3 biopsies total, and they knew something was up. They were amazing. At first, my daughter shut down a bit and avoided me and any discussion. My son was the opposite and hugged me all the time as if I was about to disappear. I kept focusing on the positive and kept telling them what the doctors were telling me, that it was completely treatable. I may not have always believed it myself, as BC fills you with fear. One thing that helped is when my sister reminded me that cancer happens to the whole family, not just you. Everyone is affected, so it was best for us to include the kids whenever it was appropriate. We let them ask any questions, offered reading material, support groups, etc. They got more relaxed as time went on, and saw that I really was going to be okay. After the mastectomy was hard, but they helped alot around the house and my husband and I have talked alot about future plans, and they know that life goes on even when bad things happen. While I would not have chosen this lesson for my kids to learn, it is part of life, sadly. I did find the waiting part that you are dealing with the worst. I did better once I had an accurate diagnosis and a plan of action, and I hope you will too. Don't be afraid to get a second or third opinion if you need one, you must be comfortable with your decisions, and they are yours! Make sure your doctors make you are part of the process, we are all different here! We can all sympathize with your fatigue, I think that's one thing we all have in common here. Rest when you can, this beast makes sure you know your priorities! The small stuff doesn't matter right now, like dust bunnies, etc. Please be patient and loving with yourself, you deserve it right now. It does get better, but we all have rotten days. This is a great place to vent when they come. Keep in touch and let us know how you are.

Hugs and prayers for you and your family,
Susan

kathydaly

Sweet Moonchild,

I, like everyone else am sorry to welcome you to this site. But, I am so glad you have found us right away, it took me 15yrs, lol!!

Yes, I don't think anyone can understand the reality of it unless they've heard it themselves.
I am sure she can tell all of that by the mammo. They can see so much and remember they were looking for it and had previous ones to compare it with.
Keep trusting your gut feelings on things, as you did and probably will have occasion to in the future, your body will "speak" to you through them.
My sister and I had the genetic testing done, and those results are given to no one w/out your permission, no one, insurance companies can't get their hands on them. They also did it for free for us because they thought she and I were an interesting case. Are you going to a teaching hosp. We were at Memorial Sloan Kettering in NYC. Where are you located? I shared them w/my oncologist and as a result she helped me decide to have my ovaries removed prophylacticly because of what was discovered.

My kids were 8(only daughter), 5, and 8 mos. old.
So, my doctor told me not to use the word cancer unless she brought it up(which of course she did) and then to refer her to other women she knew but didn't realize they'd had breast cancer and how well they were doing. It was about a few weeks later that she asked me if she could get it someday and could boys get it? I spoke to her truthfully but minimally.

Also on that first day w/my breast surgeon, he gave me a prescription for valium, which helped me to sleep, and also on some bad days. I asked him for it , he didn't just give it to me. It helped enormously in those beginning days.

That 1st day after my surgeon had told me everything, and he asked if I had any questions, that was the only one I asked him, how do I tell the kids. I think your daughter probably has a lot of questions she's afraid to ask. Perhaps the best way to get her converse about it would be by talking about the enormous strides that have been made in BC treatment. I don't know, but if my 5yr. old daughter was asking what she was asking your daughter has them too. I know you know all this, so I'm just passing on what my experience was with that, maybe it will help a little.

I know that kind of sleep too, and it is not good for you now, I don't think. I would say, maybe, call your surgeon and ask if he can give you a prescription for now. I'm probably talking to someone who doesn't even take aspirin, lol?

If you're afraid to call your surgeon, not a great sign, like someone said get a good team. You really need to like your surgeon and oncologist (eventually) and feel really comfortable with them, you'll be seeing a lot of them.

I'm sending you warm huggs with prayers and love for you and your family, Kathy

cabbott

When I was first diagnosed, I didn't know anything about breast cancer except that women died from it. I mean, I was truly so ignorant that I worried if I had a month or a year left on this planet. Fear is not strong enough to describe how I felt and the feeling went on for days and nights.I decided I better read like my life depended on it (which I realized it did and that made me giggle for the first time after I got the c. news) and I'm glad I did. It took meeting others and reading a bunch, but I finally got it through my head that breast cancer was going to be something I would have to learn to live with. It has meant many doctor visits, some surgeries, different bras and such, but so far I'm a member of the survivors' club. I was diagnosed in 2002. Finding a support group like the one here or a group in your town can help with the fear and desperation. Making a plan to deal with the cancer helped me a lot too. My son was 10 when I was diagnosed and worried constantly that I wasn't telling him everything. My husband didn't want him exposed to me crying so we tried shutting the bedroom door when I got phone calls. When we found him huddled in the bathroom with his ear to the wall adjoining the bedroom, I said the heck with shutting the door. I explained to my son that I was going to cry when I talked to folks about the cancer on the phone but he could come in or leave as he wished. I promised him I would always tell him everything the doctor told me. He, like me, was just afraid that I was going to die any minute. When he was certain I was okay for the near future, he quit being so scared and got back to being his confident self. He is my number one supporter and for us the decision to be very open worked. I have not had genetic testing yet because I was the first in the family to get cancer. Now a much younger relative has been diagnosed and she is being advised to get tested. If she turns out to have something inherited, I might go for the testing too. It could be important for my son to know so that he can protect himself and any daughters. He is already interested in exercising and eating right as an adoloscent so that he can prevent cancer from gaining a foothold as an adult. I have heard that some doctors will do genetic testing on "Jane Doe" so that labs could not possibly inform the insurance companies, even by accident. Even those who do test positive for breast cancer genes are not doomed to definately get breast cancer but they certainly need informative counseling to advise them on their chances and what they should do to give them the best chances for a long and healthy life.

Moonchild

Thank you, from the bottom of my heart, to all of you who have shared your wisdom and support. It brought tears to my eyes to read your responses. My girlfriends have been tremendously supportive, but the support of a another woman who has experienced this horror is irreplaceable.

So, I have an appointment scheduled for this Thursday with a major Philadelphia breast cancer surgeon for a second opinion. I am grateful to a friend of my mother who managed to arrange this for me, though I do feel comfortable with my current surgical oncologist for the lumpectomy. I am fortunate that I live literally three minutes from Fox Chase Cancer Center, so I will pursue any further treatment there. But again, I'm just in this waiting mode.

My kids have really been fine since I shared the news with them, if a little more "huggy." I had a pink breast cancer bracelet, which I gave to my daughter, asking her if she wanted to wear it, and she immediately put it on. I have an appointment scheduled with my son's therapist, and will make sure that my cancer is the major topic of conversation. And I have called the counselor at my son's middle school to tell him of the situation, to make sure that they are aware of any acting out which may occur down the line.

I think one of the hardest/strangest things right now is that it is now one week past the diagnosis, and I'm just waiting. I mean, nothing has changed in my life in terms of what I'm feeling physically; I think this is why I haven't seen any different behavior in my children. Life is going on, though the other shoe, so to speak, will drop soon, once I have the lumpectomy and begin whatever treatment is prescribed.

I've always been a writer, though I haven't kept a personal journal for many years and feel the opportunity to share in this forum will be a positive thing for me. I have started journaling again; any outlet, right?

Again, I thank you all for your wisdom.

24242

Moonchild said:

Thank you, from the bottom of my heart, to all of you who have shared your wisdom and support. It brought tears to my eyes to read your responses. My girlfriends have been tremendously supportive, but the support of a another woman who has experienced this horror is irreplaceable.

So, I have an appointment scheduled for this Thursday with a major Philadelphia breast cancer surgeon for a second opinion. I am grateful to a friend of my mother who managed to arrange this for me, though I do feel comfortable with my current surgical oncologist for the lumpectomy. I am fortunate that I live literally three minutes from Fox Chase Cancer Center, so I will pursue any further treatment there. But again, I'm just in this waiting mode.

My kids have really been fine since I shared the news with them, if a little more "huggy." I had a pink breast cancer bracelet, which I gave to my daughter, asking her if she wanted to wear it, and she immediately put it on. I have an appointment scheduled with my son's therapist, and will make sure that my cancer is the major topic of conversation. And I have called the counselor at my son's middle school to tell him of the situation, to make sure that they are aware of any acting out which may occur down the line.

I think one of the hardest/strangest things right now is that it is now one week past the diagnosis, and I'm just waiting. I mean, nothing has changed in my life in terms of what I'm feeling physically; I think this is why I haven't seen any different behavior in my children. Life is going on, though the other shoe, so to speak, will drop soon, once I have the lumpectomy and begin whatever treatment is prescribed.

I've always been a writer, though I haven't kept a personal journal for many years and feel the opportunity to share in this forum will be a positive thing for me. I have started journaling again; any outlet, right?

Again, I thank you all for your wisdom.

Moonchild,
I believe the greatest gift we can give our children is exactly what you are giving them the truth. So often the uncertainties are so many that talking about them make the fears greater but our children have to be apart of what is truly going on in our homes. I use to wish that my cancer diagnosis would change the way my angry teen behaived but be careful what you wish for because my angry teen just got angrier and could think of more reasons not to care about anything. Funny I thought it would have the opposite affect and that he would maybe start to care about things. He just realized at that moment what was the point to carring really since you were just going to die.
My son is now turning 25 and I couldn't be more grateful for having survived long enough to see the tide of change come through him, something some mothers never have the opportunity to see. Cancer changed everything and as much of it that was bad there was whole pile more good that came out of it and being grateful was one.
I think we can encourage our children to live better lives and remind them they too have to be aware of risk factors and try to do things that help thier bodies along the way. I can only remind my son of the things that aren't good for us and hope that he too will want to help change the coarse of his being.
I can only hope that your kids will be able to see the positives and not get stuck on all that is negative.
We are so glad you found us because it took me along time to find a place like this, long after my cancer fight was done. But I too am so glad I found a place to lay my fears and all that I have.
Look forward to talking with you,
Tara

LesleyH

Moonchild said:

Thank you, from the bottom of my heart, to all of you who have shared your wisdom and support. It brought tears to my eyes to read your responses. My girlfriends have been tremendously supportive, but the support of a another woman who has experienced this horror is irreplaceable.

So, I have an appointment scheduled for this Thursday with a major Philadelphia breast cancer surgeon for a second opinion. I am grateful to a friend of my mother who managed to arrange this for me, though I do feel comfortable with my current surgical oncologist for the lumpectomy. I am fortunate that I live literally three minutes from Fox Chase Cancer Center, so I will pursue any further treatment there. But again, I'm just in this waiting mode.

My kids have really been fine since I shared the news with them, if a little more "huggy." I had a pink breast cancer bracelet, which I gave to my daughter, asking her if she wanted to wear it, and she immediately put it on. I have an appointment scheduled with my son's therapist, and will make sure that my cancer is the major topic of conversation. And I have called the counselor at my son's middle school to tell him of the situation, to make sure that they are aware of any acting out which may occur down the line.

I think one of the hardest/strangest things right now is that it is now one week past the diagnosis, and I'm just waiting. I mean, nothing has changed in my life in terms of what I'm feeling physically; I think this is why I haven't seen any different behavior in my children. Life is going on, though the other shoe, so to speak, will drop soon, once I have the lumpectomy and begin whatever treatment is prescribed.

I've always been a writer, though I haven't kept a personal journal for many years and feel the opportunity to share in this forum will be a positive thing for me. I have started journaling again; any outlet, right?

Again, I thank you all for your wisdom.

A quick comment on your decision to journal your experience. This is a very good thing. Numerous studies show that it actually does improve healing.

Best wishes and warm hugs.

Lesley

helpmeob1

Here is the first thing you need to understand about a cancer cell. It is a cell with amnesia. It's a cell that is cut of from the brain and no longer in communication with the rest of the body. Get a cluster of these together and you have Lord of the Flies at the cellular level.

There is a compound out there that brings order back to these cells and essentially makes the cell remember or even realize what is was designed to do immediately upon contact. The cell that once lacked purpose and was destructive begins to act and behave with order submitting to the body's authority.

This is wild stuff I realize. As out there as it sounds if a cancer cell does an about face and aligns itself with the same purpose of the body it lives in it immediately stops being destructive.

Cheers!

James

ireallywishihadthat (at) yahoo.com

ClareT

Dear Moonchild: I was diagnosed with invasive lobular carcinoma this past August. I have two daughters, ages 15 & 18, each handling the diagnosis and the ramifications differently in their own way. I have been very open about everything I (we) are going through. For me it has been chemo (just completed), a mastectomy next month, followed by radition and then reconstruction. I also just had the blood draw for the genetic testing, but do not have the results. I did tell the girls I had the genetic testing. That was one of the first questions that popped into their minds after we told them about my diagnosis "does this mean I am going to get breast cancer?" So, they were already aware they now had this predisposition of fear of breast cancer. If the genetic test comes back negative maybe they can have some peace of mind (although just because it's negative doesn't mean they are exempt from getting breast cancer as we all know) and if it's positive they need to know so they are aware of the importance of breast exams and earlier screenings.

To me the first month or two was the hardest because there were so many unknowns, determining the right treatment plan, going brain dead on information overload. Once my treatment began and we got back to somewhat of a routine around our house, things did get easier. But as many others have said before me, attitude is everything. Stay positive!

Peace!

ClareT