No information is hard

AwayfromMom

Hi All,

My mom was diagnosed about a month ago with breast cancer. She lives on the other side of the world from me in the same city as my brother. We have all had various serious health scares, so dealing with doctors and treatments and prognoses are not new things. Also, my mom and I have a good, close relationship. Even though we're on opposite continents, we talk a few times a week (FaceTime). I've stayed with her for several months at a time when my family was mid-move. So, we're close.

Anyway, initially, my mom (and brother) gave me the impression that it was just two small lumps and a lumpectomy should take care of things. During the lumpectomy, it was discovered that the cancer had spread into 29 of 30 nodes (this number doesn't sound right to me, but I'm pretty sure that's what she'd said...although she was fairly doped up at the time). After waiting for the pathology, it was determined that it was hormone positive. Thankfully, her PET scan came back that it has not spread farther than the axilla nodes.

This is all the information I have. My mother seems to know much more, but won't divulge. I assume she's "putting on her happy face", which is her default. My brother just keeps everything even keel and reminds me that we aren't going to freak out over it. (I'm not actually a big freak-out person. But he seems to remember me at the age of 14 when I was indeed a typical drama queen and thinks I never moved beyond that stage. I'm actually pretty funny and chill.) I actually think he tells others this to remind himself that he's the "even keel" of the family. Anyway, bad psych 101 aside... I've been told not to come home repeatedly (I have a family with a 4 year old here, so hopping on a plane is logistically very difficult, and my husband just had his very own big nasty health scare).

I am extremely frustrated. I just want to know what is going on. I can't read about her cancer because there are too many holes in what she's shared. I asked her point blank tonight if she knew what stage she was. She said that her doctor told her that he didn't like to give stages because treatments have come so far that putting a stage on it didn't really help him get to the end of goal of getting her well. Then she got upset and said if she were going to put a stage on it, she'd probably be Stage IV because it had spread. I said, well, it hasn't gone beyond the axilla nodes, so maybe it's still 3. Then she said it's because of how big the tumor they removed from her breast was. Nobody ever said a word to me about her tumor being large. The last anyone had said was that it was removed. Period. End of story.

Anytime I ask a question (and I don't ask many... I try very hard to keep conversations light because that's obviously what my mom wants right now), the response is always snappy and usually in a tone that suggests I should have known the answer to the question because it's obvious to anyone who knows anything.

I guess I just want to know what is going on. I'm not going to continually spend hours discussing it with her or with my brother. I don't want that, and neither do they. But some information sure would be nice. I'm getting such piecemeal information that I don't know what questions to ask. When I do ask questions of my mom and brother, I'm met with eyerolls (it's all over FaceTime, so I get to see the lovely eyerolls).

I've already told them I'll come home to help during the chemo which we all assume is coming. They'll tell her more in two weeks. I think. My mom insists it's unnecessary. My brother works long hours, so unless she's going to take a cab to and from chemo, and take care of herself.... Yeah. I'm going home for a while. I'm happy to do so. I love my mom. I want to help, but honestly, I'm pretty sure her neighbors know more about what's going on with her cancer than I do.

Anyway, I'm just frustrated. I'd like some information. I'd like to be included like I'm a member of the family. I work VERY hard to stay in touch and spend vacations going home to see family rather than going on vacations to relax/get away/see things, etc.

Has anyone else dealt with something similar, where the stricken person just simply won't share information? I don't want to have a big conversation with her about it because me telling her that my feelings are hurt is just going to upset her further, which I don't want to do.

Anyway, thoughts? And thanks.

Moderators

Oh, this must indeed be so frustrating for you! Perhaps you could simply ask if someone (your brother, mother, doctor) could send a snapshot of her pathology report (her test findings) so that you are kept in the loop, then they don't need to discuss things with you, rather let you just see for yourself.

exbrnxgrl

Hi,

Dealing with a parent's illness long distance is indeed frustrating. Before I lay on the positive assurances, let me address a few things:

- converting to a mastectomy, when it was thought that a lumpectomy would suffice, is a decision that is sometimes made on the operating table. Prior to surgery, imaging and biopsy results help develop a plan, but once someone is on the operating table, those plans can change depending on what is found.

- There are no set number of axillary lymph node. Each person is a bit different and the nodes themselves are encased in fatty bundles, which are counted when the bundle is dissected. 29 out of 30 means that there were a lot of effected nodes, but the number itself is not an unusual quantity.

- It is unusual that the doctor won't stage your mom, at least in the US. Could this be particular to your country? Based on the info you supplied, I would say she is not stage IV. That is generally defined as spread to distant organs such as bone, lung, brain or liver. I am not a doctor, however, so don't quote me on this 🙂.

- Would your family be willing to send you the post-surgical pathology report? That would give you the details you are looking for. Sometimes, they are hard to read, but not impossible, especially if you can find a doctor to go over it with you.

Your mother is your mother, regardless of your age. Mother's natural instincts are to protect their children, especially when that child is geographically distant. You are an adult, of course and I understand that you don't want to be protected. My adult daughters live close to me so I couldn't shield them from my bc , nor did I want to. However, my elderly father lives far away and has had a rough few months. When I speak with him, he glosses over a lot and I have to call my brother for the unvarnished version.

Just let your family know how much you care and clearly explain that despite the distance, you want to be as much a part of this as possible. Tell themthat the dramatic 14 year old is long gone! With, email, Skype etc., keeping you in the loop should be fairly easy.

As far as going home to help, why don't you wait to find out what the proposed treatment plan is? Make sure that your family asks, very explicitly, how the treatment will effect your mom and how much help she will need. Your mom is lucky to have such a devoted daughter and it is clear that she cherishes you as well. So, get the path report and I think that will answer many of your questions. Take care.

exbrnxgrl

LOL! The mods were on the same wave length

AwayfromMom

Thank you, Moderators! That's a good suggestion. I'll see if I can do that. I think I needed to vent a little bit.

AwayfromMom

exbrnxgrl: Thanks for your response. The Mods were indeed on the same length. It's good advice!

Mom is actually the one in the States. I'm honestly not sure if she didn't really want to label it because then it's too scary, and the Dr figured that out. Or if the Dr is just really against the labels. I suspect it is more of the former. The "team" as she calls them all seem to be very caring and not brusque, keeping in mind the patient's mental/emotional state. She's very happy with that, so I don't want to mess with her warm fuzzies too much. On the "the team" is actually a Nurse Patient Coordinator who calls herself the Cancer Coordinator. I wonder if mom would give me permission for me to talk to her. Her job is to answer questions and help patients and families make sense of what's going on. I've only heard good things about her.

I will wait until her treatment plan to figure out when is best to go home. The thing is, I know she'd do better with me there. Anytime she's had health issues (which has been a few times in the last 20 years...she's in excellent condition but she's almost 70), she's always been so much happier (as has my brother) for me to be there. She's definitely a needy person when she's not well, which is how she approaches illness. Other people want to be left alone. She's the exact opposite. She needs a lot of emotional support which my brother is not awesome at giving. His has great strengths, but extended emotional support isn't really his wheelhouse.

As far as the 14 year old... it's a hazard, I suppose of leaving when one is a teenager to go off to college and never really going home to live again. You're a nutty teenager to everyone forever. HAHA!

Thank you for your experience. It's given me a few points to consider. I think I needed a good venting.

wrenn

My mother would be vague to keep me probing. Yours might just be processing the diagnosis and is being vague with herself.

It is frustrating but I think being direct about what you need ( and deserve as a family member) is the best solution. Tell her you need more information to understand what she is experiencing and that telling you everything is fine is not sitting well with you. You are getting mixed messages I think and asking for clarification is reasonable.

Best of luck to you and your mom.

DivineMrsM

Maybe take a step back and just observe. Send a card in the mail "thinking of you". Send a text here or there along the same lines. Talk about other things, funny, sweet, dramatic. Your mom may prefer some distractions. If it's been just about a month since diagnosis, she is still processing everything. Taking care of what you want or need is not on her priority list.

I'm not sure what the urgency is that you know all the intricate details of your moms bc. Do you plan to try to advise her what to do, what approach to take once you have the information? She may feel like you are trying to take control of the situation when it is hers to deal with and she wants you to respect that. Being almost 70 doesn't mean she is old or senile and can't figure things out. When you do go home, let the situation unfold and observe. It is better to make a few smart suggestions rather than try mapping everything out on a daily basis.

Your mom is blessed to have you as a caring daughter willing to help. If you go with her to chemo, you will learn a lot more about her bc. Just be patient, the information will unfold.

AwayfromMom

wrenn Yes, it's the mixed messages that is upsetting. I understand her processing, and she doesn't want to talk much about it. She would much rather hear about what my son did in PreK that day. I'm happy to oblige her. But being vague about it and then getting upset at me because I don't already know something is difficult.

TheDivineMrsM I've been working very hard at just sitting back and being as normal as I can be. This is something I'm good at with my mom. I don't want to manage her care at all, nor would I ever accuse her of being old/senile. She is most definitely not either of those things. She is wicked smart and in better shape than I am (except the cancer part...). And I love that about her. It's more that there are conflicting conversations which frustrate us both because she mentions something, and I say "I didn't know" and then she gets upset that I didn't know. Sigh. Mostly, I just want to be what she needs me to be. I'd also like to know what's going on so I don't ask questions that garner sighs, eyerolls, and exasperation on her part. Thank you for your thoughts.

DivineMrsM

Consider saying that in a card. Along the lines of "Mom, you are wicked smart and persevere no matter the circumstance and that is what I love about you. I am here for you no matter what you need."

Sometimes the written word plants a seed better than the spoken word.

If you see it upsets her when she tells you something she thought you should already know, don't admit it, just nod your head, say, "I see." And " "How does that make you feel?" Another thing I recently read was to ask questions in this way, "do you mind if I ask you....."...and then insert your request. Such as, "do you mind if I ask you if the doctor has said what chemotherapy drugs you will be getting?"

DivineMrsM

Or this: "Do you mind if I ask you if you would give your permission for me to possibly talk to the Nurse Patient Coordinator about some medical questions I have about breast cancer? It might really help me make some sense of things. ive only heard good things about her, and with her experience, she may be able to provide me with some insight."

Hopefully your mom would be receptive to this, and asking your questions to a neutral middleman like the NPC frees your mom's energy up so she can heal.