Desperate for Information

Options
KristaM
KristaM Member Posts: 3
edited October 2016 in Waiting for Test Results

My Mother was diagnosed with triple negative breast cancer. They told her that her chances of living for five more years were very low considering how aggressive that it was. I'm exact as to the size of her tumor or all the details about it (I was 14 when she was diagnosed and she tried to hide what she was going through so I didn't worry about her). She had it removed from her breast and under went radiation and chemotherapy. I don't know all the names of everything and all the technial stuff about how all of this works but I do know that there are different types of chemo, some are stronger than others (If I've understood correctly?) and from what I know she was given the three most toxic, aggressive, and strong chemo's. They told her that she was "maxed" out on the amount of chemo and radiation she would recieve in her lifetime. I didn't know that this was possible. It has been five years since her initial diagnoses. She has not been declared to be in remission yet. They told her that once she has been cancer free for 7 years they would say that she is in the "safe zone" and in remission. (Doesn't seem like there is ever a safe zone for these kinds of things to me though). However, every three months since her initial diagnosis she has had to go for a mammogram. And I'm not sure what all medicine she has had to take but I know that she has like 3 pills a day she has always had to take (one of the medications had to be changed because I guess you can only take it for so long before your body becomes used to it and you have to switch to a different form of it?) BUT this past Thursday she went for her regular mammogram appointment and from what she told me, "they seen a spot and I have to get an MRI". I've done so much research and from what I've read it seems pretty rare to go from mammogram to MRI. It seems that typically after the mammogram they can give you an idea of what they believe it could be and also usually an ultrasound or biopsy comes next, not an MRI. I've done so much research and I'm not finding anything out. My mom is still trying to be protective by not making me worry so I know that she'll keep the details of what she knows (i.e. if the cancer is back how bad it is, what they can/cant do) and I'm NOT 14 this time. I am old enough to be there in ways I wasn't able to before and to help her in ways I couldn't before so I need to learn as much about all this as possible. I need knowledge and some understanding so I can be there for her as much as I possibly can be.

Have any of you had this kind of experience? (No cancer for 5 years- regular mammograph visit- spot seen- MRI?)

Does anyone know any information on the likelihood of it being something benign, or a cyst, or a mistake during the mammogram?

I couldn't find any information online about getting cysts or benign tumors after having cancer five years before? Or having cancer before period. I could only find info about cysts and bengn tumors BEFORE ever having cancer and it increasing the risk of developing cancer.

Also, with triple negative being such an aggressive cancer and them basically telling her that her chances of living more than 5 years were slim to none when she was first diagnosed and it being her 5th year what are the chances of it not being cancer?

ANY information anyone has will be so helpful. I don't want to swarm her with questions and stress her out by doing so right now because I know she is worried enough but I don't know what else to do or how else to find out information about any of this and I am so so worried and stressed out.

Comments

  • SongBirdGirl
    SongBirdGirl Member Posts: 9
    edited October 2016

    I don't know the answers to most of your medical questions but am a daughter with a mother who is currently going through heart issues. She is an 18 year BC survivor whose MO released her after 15 or 16 years. One of the the causes of her current heart problems was the BC radiation. So the limits might be to avoid other damage. Also, Mom let me read the letter her cardiologist sent to her PCP. It explained everything and Mom didn't have to. I learned what was going on and it was easy to write down for lookup later. Perhaps your Mom would be ok with something similar.

  • KristaM
    KristaM Member Posts: 3
    edited October 2016

    I am so sorry to hear about your mother. It is very tough! I wish you all the best and thank you for your comment. I will most definitely have to ask if I can just read the letter and reports. I have tried to attend doctors appointments with her just to be there for support but she doesn't like letting us know when they are. I think she's just so accustomed to handling everything on her own and not needing anyone. Don't know whether to push harder or just let her know I am here if she needs me.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2016

    I think a doctor should help a patient understand what kind of cancer they are dealing with, but they should not give a person an expiration date like that. They do not know how long someone will live! Actually, the fact that your mom has stayed healthy for five years already, after a TN diagnosis, probably means she is more likely to continue to be healthy. TN tends to recur earlier rather than later, so five healthy years is a good sign.

    Krista, I hear the tremendous love you have for your mother. It seems moms want to protect their kids not matter how old those kids are. And of course, she does have a right to her privacy. Perhaps it helps her feel better if the two of you can just be normal and ignore the cancer stuff. If that is the case, you help her by being that sort of relief for her. But maybe you can explain that without any information, you are likely to be imagining things worse than they actually are. And it may be that the calmer you are, the more your mom would be willing to share.

    If your mom has dense breasts, that could be a reason for the MRI. Try not to jump ahead. Wait and see, and if anything is up, there will be a plan to deal with it.

Categories