Mom with "small" Triple Negative - feeling overwhelmed

Kayla23

Greetings,

I was on this forum several years ago after my own cancer scare. I had lumpectomy with Stage 0 and thankfully no further treatment. We have been thrown into this damn cancer world once again. My mom had her routine mammogram (normal) and because we have dense breasts, I insisted she have the ABUS (whole breast ultrasound). And lo and behold, they found a tiny 1 cm mass that needed to be biopsied. Everyone told her it would probably be a nothing thing that at MOST would be a lumpectomy and maybe a little bit of radiation. Well, well, well, after talking to breast surgeon, it isn't JUST that. That THING turned to be Triple Negative. This little thing. Anyways, the surgeon (who I do like) is having my mom to have an MRI to be sure nothing else is missed. But at the meeting it was so overwhelming. Talked about all of the things that will need to happen right before/during surgery. Will have to take out lymph node (will have to worry about the lymphedema thing), will need the radioactive seed (in breast?) put in before surgery and colloid silver (?) thing in armpit too to test lymph nodes. Inject blue dye too. Talk of possible more surgery after if issue with lymph nodes. Also mentioned the damn chemotherapy too. It sounds likely she may have to have it, but it's still now at a "we'll see" status. Need to test the tumor after excision. Then mentioned about possibly needing to put in port if chemo needed. WHAT IN THE HELL ARE YOU GOING TO DO TO MY MOM? All from a tiny little thing. I know this sounds like I'm rambling but I'm just so overwhelmed and scared for my mom. I'm scared of chemo and how it could hurt her worse. How do I get support that will really help us get through this? Thanks for listening.

LisaAlissa

Kayla, I'm so sorry you're back to "cancer-world." But since you're back, I'm glad you found your way back here again.

You may want to get a referral to a medical oncologist before surgery...they've increasingly been doing chemo before surgery, which allows them to check the efficacy of the regime against the actual tumor. I'm not sure if the triple-neg is one of those, but presumably you'll hear from others about that.

Hang in there!

LisaAlissa

SpecialK

I realize that this is overwhelming and I am so sorry that you are back here again and worried for your mom. All that you mentioned is standard of care and the very same type of treatment surgically that any of us with an invasive cancer receives. A port is also standard pretty standard - if she needs chemo - which, if the tumor is deemed TN on post-op pathology, she most likely will. Chemo for aggressive subtypes of cancer is to be expected and offers your mom the best chance at being cancer free post-surgery, but there are a variety of regimens and some are gentler than others. What type of support are you seeking - help with understanding her diagnosis, emotional support, or physical help with day to day matters during her post-op and possible chemo? Many of us who have been here a long time can help point you in the right direction for those things? Does your surgeon or center have a nurse navigator?

Kayla23

Hi there,

Thanks for the responses!! I've calmed down a little bit (well for today!) I think her surgeon does have a nurse navigator/coordinator. We are meeting with another oncologist tomorrow (he's one of the best in the area). Have so many questions. I've read articles that chemotherapy isn't the greatest to triple negative -that there are new treatments being researched (PARP inhibitors). I just can't believe this is happening. I don't want her to get more sick (not that she's looks ill whatsover) and certainly don't want drugs to hurt her. I guess the support I/we need is that I want to be able to be there for my mom, yet deal with being sandwiched with the responsibility of running my own household/family life. I'm not yet sure what my mom needs. She is such a strong independent woman. Maybe it would be good to be paired up with someone who has been through this recently (and has a happy ending...please?)

Has anyone heard of Imerman Angels? They pair you up with a cancer survivor mentor who has been through your exact diagnosis.

Ok- I have to get back to work. Thanks everyone for being here!

have a happy, healthy day!

MTwoman

Kayla,

It is pretty common in the diagnosis phase to feel overwhelmed and caught off guard. The unknown is pretty scary. Once your Mom (and you) have had a chance to better understand her diagnosis and treatment options, and your Mom gets a chance to make some decisions and get a plan in place, I believe you will start to feel more confident. You will be able to understand what your Mom wants/needs as far as support and assistance, and how much of that you will be able to provide. That lets you both set good limits around what is helpful to her and what fits into your own family life. Letting her set those limits is very important, as those of us walking the path need to be in charge of who/when/where/what kind of support comes our way as much as possible. Please let us know how we can help. ((hugs))

Kayla23

Hi-

I guess at the moment I want to know how to calm the anxiety/worry/panic in my mind. I just don't want to lose my mom. I'm at the "this wasn't supposed to happen" phase (for a lack of a better term). My mom is seriously one of those people who you have to catch up to - she's always on the go, always in motion, always doing something, always helping others. I find myself crying in the shower, in the kitchen, just with this feeling of dread. I just don't want life to change for her (and selfishly, for any of us). I want her to be around for a good long time...I just hate cancer! And I know at every step of the way I'll learn more about this chapter of our lives. I want to be sure she's getting the best care (medically and physically/mentally) and hope this whole darn thing doesn't last very long.

So I guess in the meantime, how to calm that panic??

Thanks!!!

Kayla23

Wow. So much has happened since I last wrote here. I'm feeling nervous/concerned again. My mom is going ahead with chemo. It was a tough decision, But after talking to several experts, it sounds like it's better to deal with this at the microscopic level, than wait until it becomes metastatic. I cannot believe this is happening. I'm glad the doctors feel that my mom is strong enough to withstand chemo (it's not a long course, well compared to others I guess). but I just want to do whatever I can to protect her from feeling any ill effects. And we all need to survive psychologically. What support helped/helps you? (patient and caregiver).

Thanks!!

MTwoman

Kayla,

thanks for coming back and updating us on your Mom. It is very typical these days to hit triple negative bc with chemo early. That way, they know how effective it is on the particular woman's cells before surgery. Some women even have almost no 'lump' left after their neo-adjuvant treatment (that's chemo before surgery). I think that you might find the "For caregivers, families, friends and supporters" forum on this site very helpful, given that there are others who wonder about similar questions. I think that wanting to "protect" your Mom from feeling "any ill effects" is admirable, but she is going to need to chose what types of complementary treatments and/or supports she wants/feels is necessary. Has she signed up on this site to discuss her treatment option with other women who are/were triple neg? Or does she have a nurse navigator to help her? I think that making sure your Mom has access to support on her own, would be really useful in addition to you being ready/able to provide what support she wants. Hoping she does well on her proposed treatment!! ((hugs))

KSteve

Kayla - There is also a wonderful thread on this side called "Calling all TNs" that has a great bunch of supportive women and a few men on it. Feel free to find your way over there for additional triple negative specific questions/concerns. Chemo is definitely the right call. I am 6-1/2 years out from a large TN tumor and doing great. Your mom is lucky to have your support.

Hugs,

Kathy

Kayla23

Hi everyone,

A lot has happened again since I last wrote. My mom just had her first chemo. She did so amazingly well. So far the main side effects are a little bit of indigestion, feeling a little loopy, some fatigue (so she rests - but we make sure she does some active walking for at least 1/2 hour a day). So far so good!!! I don't want to jinx anything!!! I still can't believe we are in this chemotherapy world - so surreal. Just hope the rest of the treatments go ok too!!!