Not the news I wanted to hear

[autumnfire]

Update #1: pandce.proboards.com/post/8508838
Update #2: pandce.proboards.com/post/8571757
---
This weekend I called my mom to see how she was. Our family has been going through some medical problems and I'm so far away from everyone that it's really hard to get the scoop unless I call and prod. By asking how each person is doing is usually when I get news on them. My parents hate to make me worry so they like to wait to tell me when things are wrong. My brother may have heart issues (He's been out of wind and his ekg came back showing some problems further tests need to be done), my uncle needs triple bypass surgery on wed and my mother had a growth on her leg that was biopsied this past friday

Any ways I called on Saturday to see how everyone was. My brother there's no update as tests are still under way including a sleep test? Uncle, well not much more than we already know. Then it came time for my mom to let me know how she was. She tells me
M:"It went fine, it's cancerous." The way she said it though was like it was no big deal.
"He went really deep to the bone and got it all."
Me: "So you already have the results? They did a scan to confirm he got everything?"
M: "Doctor said he's 99% sure it's cancerous."
Me: " Are you getting any further testing to see if it's spread?"
M: "It likely hasn't. I could see the bump so chances are I'd see others."
- I don't know a lot about cancer but I do know that you don't always see it for it to be there.
Me: "Well you don't need to see it for it to be there."
M: "He'll run some blood work but I'm fine."

I guess this was one of those conversations you had to be a part of. But she was so breezy about this and I'm not sure if she's trying to protect me or if what she's saying is true and it's really no big deal at this point. Given my families track record of waiting until things are really bad I'm not sure what to think. She said it's not Melanoma which again I don't know a lot about cancer but how does she know/ her doctor know it's not a certain type of cancer? Then tells me there's 3 levels? And hers was the middle. Again I have no clue what she's talking about and I really don't want to Dr. Google. I just want to know if I should be worried or play it off like it's NBD until she gets her biopsy results. Logically I know to wait to hear things, but internally I want to support her and prepare myself if this could possibly be something more then my mother is playing it off to be.

I don't even know what I'm looking for here. Experience perhaps? Overall it was a confusing weekend and I hope my mom's not putting on a brave face because I want her to feel supported if she needs it.

[trafficgirl]

I'm sorry. I wonder if she's being breezy because she's not ready to deal with the fact that she just had a cancerous mass removed and that there may be more elsewhere. Or she could be trying to protect you.

Either way it's not easy and I get the feeling of wanting to prepare. Unfortunately it sounds like there's not much for you to do.

[autumnfire]

Jan 26, 2015 16:21:54 GMT -5 @evelynrichards said:

I'm sorry. It must be hard being so far away.

Thank you, it is, especially at times like this.

[autumnfire]

Jan 26, 2015 16:27:36 GMT -5 trafficgirl said:

I'm sorry. I wonder if she's being breezy because she's not ready to deal with the fact that she just had a cancerous mass removed and that there may be more elsewhere. Or she could be trying to protect you.

Either way it's not easy and I get the feeling of wanting to prepare. Unfortunately it sounds like there's not much for you to do.

You nailed it on the head. Exactly what I was thinking. Well one of the many things I was thinking, that perhaps (and rightfully so) this was her own defense/ coping mechanism.

Hate it when I can't help fix a problem.

[candyland]

I'm sorry. I agree that maybe she doesn't want you to worry.

[autumnfire]

Jan 26, 2015 16:29:46 GMT -5 candyland said:

I'm sorry. I agree that maybe she doesn't want you to worry.

Many thanks

[dirtyred]

I feel for you trying to deal/learn about medical issues over the phone.  I have to do it with my parents as well.

As for the "three levels" your mom spoke about, it could be the grade or aggressiveness of the cancer.  A grade 2 tumor is in the middle of the scale--not aggressive, but if given enough time, will spread.

[lemons]

She may not know much til after the biopsy results are back. I suggest staying away from Dr. Google, though.

[calledout]

I hate it when parents don't give you info:((. Two bits of advice from me. First - can you go with your mom to her f/u appointment? It sounds like your are OOT, so that might be difficult. Perhaps she would agree to patch you in over speaker so that you can hear the doc and maybe ask a question or two?

Second - The best top I ever got in this dept was to make the obligation mutual. So you say something like "we have to promise to never ever keep health info from each other, even if it's hard or scary. I will tell you everything. Will you do the same?"

Not sure if that will work for you, but it seems like sound advice (that I never used, for the record, lol:). My mom never told me anything and it caused me so much anxiety).

[pelirroja]

I'm very sorry.

[autumnfire]

Jan 26, 2015 16:31:58 GMT -5 mofongo said:

I'm sorry:( Was this done by a dermatologist? Does she know if it was a mole, or more of an under the skin growth? Scary and frustrating for you;( My dad used to try to protect me from medical info and, while I understand it, it made me so angry.

Truthfully I don't know who did it. I did see them over the christmas break and it was a big big bump on her leg. I'd say roughly an 1 inch high and 3/4 inch wide? Right on her shin.

I'm sorry your dad did the same. I know she wants to shield me but at the same time I'd like to know all of it so I can make my own choices you know to help, or to worry etc. It'd be hard but she's the one going through it and I'd want to help support her in whatever way I could. Even if that meant being her ear to talk off if she needed it.

[autumnfire]

Jan 26, 2015 16:31:01 GMT -5 dirtyred said:

I feel for you trying to deal/learn about medical issues over the phone.  I have to do it with my parents as well.

As for the "three levels" your mom spoke about, it could be the grade or aggressiveness of the cancer.  A grade 2 tumor is in the middle of the scale--not aggressive, but if given enough time, will spread.

Thank you for the explanation and support. I greatly appreciate it.

[autumnfire]

Jan 26, 2015 16:31:47 GMT -5 lemons said:

She may not know much til after the biopsy results are back. I suggest staying away from Dr. Google, though.

Thank you, and I agree about Dr. Google.

[autumnfire]

Jan 26, 2015 16:32:10 GMT -5 calledout said:

I hate it when parents don't give you info:((. Two bits of advice from me. First - can you go with your mom to her f/u appointment? It sounds like your are OOT, so that might be difficult. Perhaps she would agree to patch you in over speaker so that you can hear the doc and maybe ask a question or two?

Second - The best top I ever got in this dept was to make the obligation mutual. So you say something like "we have to promise to never ever keep health info from each other, even if it's hard or scary. I will tell you everything. Will you do the same?"

Not sure if that will work for you, but it seems like sound advice (that I never used, for the record, lol:). My mom never told me anything and it caused me so much anxiety).

Thank you for the suggestions. I really appreciate it.

I can't go right now as I'm 8 hrs away. But honestly if she ever wanted me to come and I'd make it work some how.

I like the idea of a mutual obligation. This is certainly something we've talked about before. I've let her know that I can handle bad news and while it would suck to hear I'd hate to not have the option to react if I needed to (if you get what I mean). Normally my family waits until after a crisis is over and is okay to tell me. Luckily since my brother started dating my SIL I've had an in and she lets me know if something is really bad. So I guess my mom telling me was a step in the right direction. Although she only mentioned the biopsy after I asked her what the bump was on her leg.

Thank you again. I really appreciate it.

[autumnfire]

Jan 26, 2015 17:57:38 GMT -5 googled said:

I'm sorry, I hope everything is ok.

Many thanks. Hopefully we hear something this week.

[autumnfire]

Jan 26, 2015 18:00:40 GMT -5 suzubell said:

I'm sorry My ILs are the same way, hiding information until we straight up ask for it and then breezing over it. Come on, we are all adults. Just tell us what is going on!

Really wish they'd get the bolded memo...

[TheSeaward]

my parents are like this. when my mothers cancer returned, my brothers and I took a more proactive approach. for starters, we insisted that one of us be at all of their dr appointments so we could get the information first hand.

[autumnfire]

Jan 27, 2015 16:39:34 GMT -5 TheSeaward said:

my parents are like this. when my mothers cancer returned, my brothers and I took a more proactive approach. for starters, we insisted that one of us be at all of their dr appointments so we could get the information first hand.

I'm really sorry about your mom's cancer returning. I like the approach of being proactive. But the only way I can really do that is via the phone. But I liked the idea that was mentioned to have me on the line when she goes to her appointments.

Thank you.

[starburst604]

I'm sorry, I can relate. My dad has had a myriad of heart and stroke issues and is infuriatingly blasé about it. He has even kept stuff from me and my sister until after he's been treated and out of the hospital. He apparently was in the hospital for a week last winter while he was vacationing in FL and casually mentioned it at a BBQ over the summer like it was NBD, then dropped the bomb that he needed more surgery.

We finally pried some info out of him by stressing that it's important for us to know our family medical history for our own health, especially in regards to heart disease. I stopped short of coming along uninvited to one of his cardiology appointments because he finally gave us some details. If your mom can't/won't share with you, could you ask her to have her doctors call you and explain things? They will usually do that with authorization from her.

[autumnfire]

Update: I had a good chat with my mom and I let her know I was there for her. That my inquiries were because I wanted to know and help in whatever way I could while being so far away. She told me this past weekend her follow up is monday. I asked her who is going with her and she said no one. I asked her to reconsider because she said it wasn't a big deal. I told her regardless she should have a second set of ears there and just someone there to be with her. She told me she may ask my grandma to go if she felt it was necessary.

This morning I texted to let her know I was thinking of her and to ask who was going with her (if no one was going I was going to ask to be on a call with her and the doctor) She let me know my father was going with her. All of this is a big relief in the sense that she'll physically have someone who can go with her.

Her appointment was at noon and I can only guess that any news she gets is going to be with regards to next steps more then what exactly is going on. Thank you all for your support and thoughts.

[Bernadine]

I hope she gets some good news.

In the future, do you think she'd agree to call you and put you on speaker when she talks to her dr, since you can't be there in person?

[autumnfire]

Feb 2, 2015 13:18:48 GMT -5 Bernadine said:

I hope she gets some good news.

In the future, do you think she'd agree to call you and put you on speaker when she talks to her dr, since you can't be there in person?

Thank you.

I'm not sure if she'd be okay but it's definitely something I'm going to ask depending on the outcome of this pathology report. Ultimatley I don't want to be too pushy but I do want to know what's up without having to worry about it being sugarcoated. Probably something I'll just have to relay once more when we talk.

[autumnfire]

Update #2: I spoke with my mom and she said it was cancerous but they got it all and that it wasn't attached to the bone. that he made sure to 'cut wide' and the surrounding tissue wasn't cancerous.

I asked what the plan was and she said she's to keep an eye out for future 'bumps' on her skin and to come in immediately. That they would remove it no matter what. That was pretty much the plan.

I haven't been down this road before so please forgive me for going on about this. I'm greatful for the update I truly am. But it seems unfinished to me. Like them doing the biopsy should have been step one of 2 or 3. I didn't expect her to get all the answers. What I expected and perhaps wrong of me to expect, some kind of follow up blood work or scans to validate their claims that it's all gone and that it didn't spread or that there isn't other issues.

I'll fully admit my mother is a heavy smoker and part of me wants them to do a full scan to ensure there's no other types of cancers (because of her smoking I've kind of come to expected cancer to be an issue at one point in our lives), or at the very least some kind of blood work. It's just not sitting right with me and I can't pinpoint why. Perhaps it's because of my lack of knowledge about all of this but I just can't shake feeling the diagnosis is incomplete?

[hopecounts]

Yeah either her doctor is being to blasé about this or she is not giving you accurate info.
A PET scan would be expected then a decision as to whether chemo/radiation would be needed.