A couple questions...

mommy13

Ok so I have a few questions.

1. I know nothing. I feel like I know absolutely nothing compared to a lot of people on here know initially. They just keep telling me they can't tell me much until after surgery. Such as prognosis, stage, hormone receptors etc. but I see people getting some of those results from their biopsy.

What other questions and things should I know?? I am going to be going for genetic testing eventually. But what other important factors should I know about my pathology. I haven't obtained a copy of anything yet.

And all at the same time I don't even want to know anything. I have to fight it regardless ... it just seems that more depressing if I'm triple negative or something else that will give me bad news. They just keep telling me it's aggressive. It grew .5cm in 1 month 1/2 and spread to my lymph nodes.

2. How do I tell my 4 year old? Do I tell my 4 year old? At first I decided I would only tell him when he started asking questions but was going to tell him as little as possible. Do I tell him straight up or just say I am sick etc. I am suppose to see a counselor but I don't know if I'll get in before my surgery date and I wanted to discuss this with her. I know he senses something. The weekend I was diagnosed he told my dad I was sick. I don't know how he knows..

3. Is it possible to work out during treatment? Is getting a gym membership a waste of money.. will I be too sick? I know everyone takes chemo differently but I've been looking into joining a gym and I don't know if I should during treatment or not.

NatsFan

Mommy - I am so sorry that you have to join us here, but you've found the right place for support and information. I think most of us here felt that the absolute worst part of this whole experience is right when you're first diagnosed and you're in for that whirlwind of tests and doctor visits. It's a whole new world with it's own language, and it's frightening and disorienting. Once you learn a bit more and once you meet with your doctors and get a "game plan" in place, it really does get better.

Get a copy of your initial biopsy report, and as a matter of fact, obtain copies of all your reports as tests are done. While initial hormone status can be determined from a biopsy sample, the most complete information will come when you have your surgery to have the tumor removed. At that point the entire tumor can be examined by a pathologist, and tests can be done to determine hormone receptor status, tumor grade, etc. You can also be staged at that point. I too had an aggressive tumor - 6 months after a clean mammogram I had multi-focal tumors and lymph node involvement. Almost 6 years later I'm still here and going strong.

I worked through chemo, but I also had a very understanding workplace. I'd usually take the treatment day off and the next day, then maybe a half a day for a couple of days after that. I know I was not at the top of my game during that time, but I was able to function at a reasonable level. But we're all different - some people sail through chemo, and others are hit quite hard and are unable to work. While exercise is extremely important, you may want to hold off on that gym membership for now. After surgery, you'll be on post-surgical restrictions for a few weeks, and walking will be about the only thing that's permitted. Then, during chemo, you may be able to work out, or you may not. If you can do some workouts at home, even walking through your neighborhood, then that's what might be better for you at this point, at least till you know how chemo will hit you.

I don't have kids or grandkids, so I can't help you about what to tell your son, but I'm sure some of the other ladies here will chime in with suggestions.

Take a deep breath and don't panic. IDC is the most common form of BC, and oncologists have plenty of experience in treating it. Learn as much as you are comfortable with, then turn off the computer and go outside or play with your 4 year old. Definitely stay off the internet except for BCO and other sites that have good information, like the American Cancer Society - you want to make sure that all the information you're getting is accurate and well-supported.

Hang in there - we're all here to support you.

ziggypop

Mommy ~ So sorry that you are going through this. It's especially hard when you are first diagnosed and are just waiting and not knowing what's coming. I'll second Natsfan's suggestion of taking a deep breath and not spending too much time on the Internet.

You are actually way ahead of where I was when I was first diagnosed - I didn't even know that there was such a thing as receptor status. If I could offer some advice it would be to take things one step at a time. There's no point in trying to think about decisions when you don't have the information yet to base the decisions on. Right now it sounds like you know that the nasty shit is about 2 cm and it's in at least one lymph node? Okay - here's the thing: if breast cancer is confined to the breast then it will not kill you. As much as you may like your breasts, you don't need them to live. So everything that the doctors do is designed to keep that cancer from spreading outside of your breasts and into other parts of your body. Having lymph node involvement isn't good, because BC tends to spread via the lymph nodes - but the nodes themselves are sort of like a string of pearls & it tends to spread from one node (pearl) to the next in the strand.

So when they do your surgery, they'll either do a sentinel node biopsy or an axillary node dissection. Here's a good link for understanding the difference between the the two dealing with the nodes:http://www.cancer.gov/cancertopics/factsheet/detection/sentinel-node-biopsy

Once they do this, they will have a better understanding of how many nodes are involved and as Natsfan said, they'll examine the cancer cells and determine more about them. This let's them know how best to treat the cancer.

With your four-year-old, one step at a time one day at a time. My 15 year old nephew came in after my surgery and was asking me about it and said, "So, I heard they took your lung out." He wasn't kidding, I don't know where he got the idea. You might want to consider having your child stay with friends or family for a few days after the surgery - just until you're feeling a little better. And then if you find out that you can handle him being at home & you think you're at a good point for him to see you, you can always have him come home.

Don't be afraid to call your doctors and ask questions.

SelenaWolf

Any "staging" that is done as a result of your biopsy is only preliminary and can change once your surgical pathology is in.  While the biopsy pathology can reveal some basic information about your tumor, the surgical pathology is more comprehensive.  That's why many doctors are reluctant to stage you until the surgical pathology is in.

Only you can decide what- and how much your child is able to process or handle about your illness.  I think that - once you start treatment - it may be difficult to hide it from him.  Perhaps asking a counsellor how best to handle this would be helpful.

There is no way I could have worked out during treatment, especially as chemotherapy progressed.  I felt pretty good for the first half, but the last half grew increasingly hard physically and I needed to rest a lot.  I continued walking throughout treatment because getting out was so good for me emotionally, but - by the end of chemo - I could only walk to the end of the street and back before feeling fully exhausted.  Radiation wasn't as hard physically and I started hiking with a friend half-way through.  Two weeks after radiation ended, I was hiking five miles, four times a week and feeling pretty good.

Anonymous

Two books which really helped me, prepare for asking questions:

The Breast Book, by Dr. Susan Love, the latest edition.

And the American Cancer Society has EXCELLENT booklets, FREE, on breast cancer, all about the types, stages, everything you need to know. Your local hospital oncology department will have them.

Also, your hospital will have social workers, to work with patients, and answer all the questions you have.

Good luck.

Oncearunneralwaysarunner

Mommy13 - sorry to hear about your diagnosis. I was diagnosed on June of this year at 31 years old. I completely understand the frustration that comes with having little information and being told that it will come. The information will come, sometimes it's just a little slower. I'll also echo the other comments that have already been posted.

When I first received my diagnosis, all we knew was that I had IDC and I have lymph node involvement. A suspicious lymph node was picked up when I had my first diagnostic ultrasound, hence why it was biopsied. After meeting with my surgeon, he wanted to explore the possibility of doing chemo before surgery and he requested that my biopsy results be retested for the receptors. I was also referred for a chest X-ray, abdominal ultrasound and bone scan. Trust that these tests will come if your medical team deem them necessary. If you have questions on wether or not the tests are necessary, ask, I never leave an appointment if I have outstanding questions. You have to be your own advocate. That how my staging was done and it took a couple of weeks to get all my results. I've had chemo and I have surgery in two weeks.

I don't think there is a right answer on the amount of research you have to do. I find I go through phases of searching for info. I search when I want to and don't feel guilty when I don't feel like researching. I found it helps to do research based on the info you have about your treatment and diagnosis. You can drive yourself nuts worrying about information that will not apply to you. Another tip I was given was to treat research as a job, only do it during the week and enjoy your weekends.

As for telling your four year old, I would be honest with him and answer any questions that he has but I would keep things high level. My daughter was 2 1/2 when I started chemo and although we didn't tell her anything, she picked up on things. She saw my bandage for my port mad asked if I had a band-aid. We told her that I had a boubou, that I was going to the doctor's for medicine and we kept it at that. When my hair fell out, we told her that the medicine was making my hair fall out. I don't know if it's the right thing to do but it works for us.

I would hold off waiting until after your first chemo treatment before signing up for a gym membership. See how it affects you and go from there. I found that I was completely wiped after my chemo treatments and I just didn't have the desire to work out. I went from training and running a marathon right before finding the lump, to doing very little because I didn't have the energy. I'm just starting to have the desire to get back into running.

Hope this info help. Just my experience so far.

mommy13

Thank you everyone for answering my questions. Its good to know I am just in the same position as everyone else who is newly diagnosed.

I have already gone for a bone scan, chest x ray & MRI. Everything came back clear. MRI showed everything we already knew. I got for an abdominal scan this week.

I just don't want to miss anything I guess. I haven't been researching on the internet at all. Just coming in here and chatting a bit. Trying to connect with other young people. It gives me some sort of comfort.

Oncearunneralwaysarunner: I am close to Ottawa and will probably be receiving my treatment in Ottawa. They have decided to do surgery first in my case. I guess because they feel the tumor is small enough and they're doing an axilla dissection as well. My surgery date is Nov 28th. Best of luck with yours!

I guess I shouldn't get ahead of myself. Try and focus on getting through surgery first and the rest will come after. Guess that's why they say one day at a time.

I have just been thinking about my son. We like to take baths together and well in a week or so I'm losing my breast so I feel like I'm suddenly scrambling for ideas as to what to say... I have set up an appointment with a counselor and I hope she can help with that.

Oncearunneralwaysarunner

mommy13 - I know exactly what you mean about wanting to connect with other young people in this journey. I get frustrated always being one of the youngest person in the waiting room for all of my appointments, or that the majority of products geared towards cancer patients cater to a more mature crowd. No that there is anything wrong with that, it just makes it a bit harder to feel like you fit in as a younger person. I've heard good things about Rethink Breast Cancer, their focus is supporting younger women affected by this disease.

Good luck with your surgery on the 28th and hopefully you will get to meet with the councillor before that. I'm having a lumpectomy with full dissection on December 2. Chemo did it's thing and my last MRI about a month ago was not able to pick up any sign of the cancer, making the lumpectomy possible. I had three tumours and my lymph nodes were already impacted. Chemo first in my case also made sure to prevent any further spread. I've had my chemo treatments at the Queensway Carleton Hospital and have nothing bit nice things to say about the staff and nurses there. Same with the staff at the Women's Breast Health Centre. The really help you feel comfortable throughout the whole thing.