Here I am

MinusTwo

I'm not scared off either. Interesting that my son also told me I shouldn't read here - but he was wrong. First of all - for me, knowledge is power. Second I got tons of support from this group that allowed me to make it through - twice. We're not about to desert you.

Glad you got an appointment with the oncologist. Do ask all your docs why they aren't considering chemo first since you're HER2 positive.

Brightness456

Thank you for sticking with me. I haven't even spoken with the nurse navigator yet. I've just been trying to absorb information and keep up with appointments. I'll have to call her in the next few days.

I'll try to remember to ask about chemo first. its the middle of,the night, and once again I can't sleep.

Thank you for the lifeline. This is so frightening.

Icietla

((Hugs))

ChiSandy

This is the time in your life that you must be your first priority, and be your own strongest advocate. We women have the “disease to please," and our instinct when we get a diagnosis like this we worry not just about our loved ones and how they will be affected, but also about their attitude about how we're handling it.

Don't go there. It is time to be as “selfish" (note the quotes) as you need to be. Depending on your loved ones is neither an intrusion nor a burden—you'd do the same for them without resentment or judging, right?

And forget all this bulls#*+ about “positive mental attitude." It may help you get through this ordeal emotionally…but NOT if you have to force it. And neither the course of treatment nor progression/response of your disease are driven by your attitude. If I had a dime for everyone who chirps that “positive mental attitude" is key, and that the lack of it can impair your recovery, I could buy a pair of boxing gloves so I could slug them.

I believe healthy people's obsession with the “positive mental attitude" of their friends & family going through a disease is a sign of being too emotionally immature to be able to tolerate negativity. It makes them uncomfortable and forces them to realize that not only are you dealing with a life-altering disease, but that, why yes—it IS really all about YOU. They should be worrying about how you feel and how to help you—not about how you're reacting to it and how that affects them.

If ever you needed an excuse to say, “Yo, over here—I need your help but not your opinions," this is it.

Brightness456

Thank you chisandy. You put my feelings into words about this. I tried to explain to my daughter yesterday that I could pretend to have a good attitude to make her and her brother and sister happy, but inside I'd still be hopeless and negative and I'd also be lying, which goes against my nature, thus would be far worse. I told her this is a time I need to be my true self. She's such a black and white, come up with a solution and move forward kind of person though. I know she loves me and she's afraid so I try to be patient, but they're all having a hard time with me trying to think of me first since what I'm feeling isn't what they normally know me to feel. They're afraid too I'm sure. I've always been the rock of strength and confidence and safety to them. Still, I feel like my best way to get through this is to do what I think is best for me even if it's not what they want from me and even if it's grieving deeply for as long as I need.

I woke up once again in a nightmare. I was yet again being abandoned by my ex (legally separated for several years), but this time it was because I was disfigured and the new woman was beautiful and alluring. I remember in past crises feeling safest in his arms. This morning I'm facing this frightening crisis alone. My bed is shared by no one. My,house is shared by no one. I'm so glad you all are here. I've never felt so isolated and sad and hopeless in my life, and I've known some pretty significant trauma and grief in my life. Spookiesmom mentioned some women who overcame relationship tragedy and abandinmentduring breast cancer. I want to believe my life will be happy and joyful again. I just don't.

Off to get ready for today's round of appointments. Thank you everyone.

Brightness456

I'm not even sure where to start. I met with the genetic counselor today. My daughter and my sister were with me. I panicked and could hardly participate in the conversation until it was nearly done. Then I had blood drawn and we went on to my next appointment with the PS. He said he thought a lumpectomy and radiation may be possible rather than a mastectomy, although he needs to discuss it with the BS and of course, depending on the genetic counseling, a BMX (is that the correct abbreviation) would be necessary. Nonetheless, he thinks my chances of successful reconstruction are good whichever path is necessary. I left the hospital feeling a little bit of hope that maybe I can make it through this. Just this one piece of good news, that I'm a good candidate for successful reconstruction, gave me a tiny ray of hope. I know I'll still have to face chemo and maybe radiation and I may lose my hair, but at least I'll have a shape when I address those potential issues.

Oh, and I talked with my son, who almost never calls or comes around, for maybe 3-5 minutes this morning when I was in a panic. He has no patience for any emotions other than support from me to him.So apparently my children all want to medicate me. And my sister agrees. I feel like the last thing I need is to feel foggy from medication when I'm finally coming out of the fog of shock. I'm not criticizing anyone who needs medication. I admire people who are able to advocate for what is best for them. At this time I do not want to take anxiety meds. I want to read and educate myself. I want to know what the worst case scenario could be so I can prepare while hoping for the best. I don't spend hours on the forum. I spend some time though and it helps.

I'm so upset and angry that I'm not sure I'm making sense. I ended up arguing with both my daughters and my sister. Now I have no one. No one is supporting me in the way I need. They all want me to act fine with this and if they have to artificially medicate me to get me there, that's what they want. No one wants me to express my emotions as they really are, just the ones they want. And the irony is that I was actually feeling like maybe I can get through this. I felt hope for the first time, not much, but some at least, and because I won't let them cajole me into taking meds, they pushed and pushed and I pushed back and made everyone angry and hurt even more and now I truly have no one.

For the first time today, I thought maybe I can actually get through this and now everyone is angry with me. I honestly don't know what to do now.

Brightness456

Well this day has been a peach. I started a new thread about my latest reason to whine, but it was suggested to delete that and post my issue here. Unfortunately, I'm not sure how to delete the other thread, although I was able to delete my posts. I could not copy and paste that post to this thread so I'm starting over, but it will be an abbreviated version because I'm emotionally spent.

My children and sister are all angry with me because I don't want to take anti anxiety meds. I actually started to feel a little bit of hope today that maybe I could make it through at least the first step. But I'm not happy enough or positive enough so they want to put me in meds so I'll pretend that I'm not devastated by this change in my life. And truly, today I actually thought maybe I might make it through this. But I'm not happy enough for them.

And truly, I'm normally a relatively positive person. I normally support my kids and overcome hurdles life throws at me. This one just took me a little longer and they weren't okay with that so they wanted to med me into compliance. And they don't think I should read this forum because they think you're filling me with worst case scenarios, but for me, I'd rather know the worst or the most likely so I can start adjusting and accepting it now and I can prepare for it, while still hoping for the best.

I don't feel like it's unreasonable to grieve. This didn't really hit me until July 5. That was one week ago. I think a week is reasonable to accept that you have cancer. Apparently not for my children and sister. I'm really hurt and now I might really be alone in this. And maybe that's best so no one can make me feel worse for being sad.

I feel like the little bit of hope I had simply wasn't good enough for the people around me. And I'm really normally a nice person, but I actually yelled back to them and I'm normally Mary poppins.

Spookiesmom

So don't tell them you read here. Or invite them to come here and read for themselves. Tell them to check out BCOs recommendations from everywhere. Sure, we have our ups and downs, setbacks and advances. That's life. There are sisters here who go it alone because they DONT HAVE family.

They aren't doing you any favors right now. You have to put yourself FIRST, because it really is ALL ABOUT YOU. Not them.

Tappermom383

If, as Spookiesmom suggests, your children and sister read some of the threads here, they will find a great deal of positivity and support. We each have choices to make; my choice is to not read the negative threads (the titles usually give you a hint). I chose to follow through with radiation so why would I read people complaining about how terrible it was? I found great suggestions and tremendous support from my sisters who also started rads in May. And when someone is down because of soreness or blistering, we all lift her up. My husband doesn't understand why I spend so much time here and he's not interested in looking at him himself or even hearing about anything I read. But that doesn't stop me from connecting with my online friends.

Spookiesmom told you and ChiSandy told you - this is YOUR time. If you can't get the support you need from your family, find a friend who can bolster you up - maybe someone at work, at church, from a club you belong to.

Try not to jump ahead of yourself. The waiting is truly the hardest part but when you get your treatment plan in place, then you can take one step at a time.

MJ

MinusTwo

Brightness - apparently some other people think you should go ahead & start new threads. When I see a new thread I try to go back & read everything that went on previously. It sometimes gets difficult, which is why I made my suggestion. Sorry if it caused a problem.

Anyway - of course you are right and they don't understand. Actually - they haven't been there. They haven't walked in your shoes. I don't think anyone can really understand who hasn't personally had BC. Of course you do need time to grieve. You don't need to take meds if you are adamantly against them. It might be useful to talk to a nurse navigator or someone with your treatment group who HAS seen it before and can empathize.

Interesting - my son told me not to read here because it would all be negative. Six years later, I've seen more positive than negative. It has been so wonderful for me to 'meet' with other women who had a clue what I was talking about. I've even had meals with members in different parts of the country when I traveled there. And the support has been amazing.

Once you have a treatment plan, I would suggest you join a surgery or chemo thread with women going through the same thing - such as Chemo July 2017. I found it very helpful to share day to day issues through out treatment.

Brightness456

Thank you, thank you ladies. I really needed someone to get it. I'm so disappointed that they all said whatever I needed they were here for me, but when I told them what I need, they all told me how they know better than I do. I'm really hurt and disappointed. I need to face this reality in my way, not someone else's way, and my way is having as clear a head as possible and feeling my true emotions.

I've got a counseling appointment today, so I'll talk with her. I'm also going to see if there is a breast cancer support group locally so I can perhaps meet with real people.

Apparently, my youngest was going to mix pot in with my food when she was home and not tell me. Really, you're going to unwittingly and unknowingly drug me? I raised those children. They didn't raise me, yet now they're treating me like I should only have the control they deem necessary over my own life. I do love them and I do know they love me, but it appears their comfort is more important than my control over my own health. Truly disappointing

MinusTwo

Brightness - thanks for my laugh for the evening. REALLY - nothing against MJ, but mixing it in your food w/o you knowing? No thanks. Maybe you don't want to continue to share all your feelings so freely. As I said, there is no way they could possibly understand. In their defense - they just want to fix you. So not what's needed.

Brightness456

I forgot to add, genetic testing results will take probably two weeks, so I'm planning to call and schedule my surgery for after July 26. The PS said he thinks a lumpectomy with rad will work rather than MX unless of course genetic testing indicates BMX is needed. Even then, because I already have implants, he thinks they can go ahead and give me new implants during surgery since my muscles are already stretched for them, so at least I'll have a shape while/if I have to deal with losing my hair and nails. I know it's superficial, but after everything that happened in my marriage with his cheating over and over, my self esteem took a hard hit and feeling like a normal woman with breasts matters to me (not that I'm implying a woman without breasts isn't a woman. It's just my issue because of things that happened in my life and I'm not willing to deny my feelings for my own self)

Ive got several questions for the nurse navigator now that I was able to calm down and start thinking. It's just so sad that now that I'm finally starting to be me a bit again after only one week since the full news really hit me, my family is angry and not supporting me.

They really hurt me.

Icietla

It is devastating to get a diagnosis of breast cancer. One gets that very hard blow, then has to be psyched-up to fight for one's life, whatever that takes. You were already hurt from another hard blow, besides. If you were not experiencing fears and dread at all, there would be something wrong with you. It is normal and natural to care very much that you are in for fighting for your life. For others to tell you that there is something wrong with you for caring about your situation -- for having your feelings about your situation -- is very disrespectful.

Of course you are not as you were before your diagnosis. You will never be quite the same (as before) again -- never!

You were a nice person before, and you are still a nice person. Your cancer will not change you that way. But being a nice person does not mean always having cheery and agreeable, go-along-to-get-along disposition. It does not mean that you should sacrifice for others the caring you owe to yourself.

Everything ChiSandy says, yes! This should be all about you. Now it is time to focus on yourself and your own needs.

(((Hugs)))

Brightness456

Oh my goodness, you all are quickly becoming my new best friends! Thank you so much for understanding. I'm so disappointed in my family. I raised my children (and really my sister to some extent) to be kind and compassionate and to try to put yourself in another's shoes before you criticize, so this really stings. Still, I recognize they are all afraid and need me to convince them this is no biggie. The problem is that it is a biggie and I need most of my energy to go to me right now.

The sad irony is I feel like the tight grip of fear and panic finally broke free yesterday and now I can start focusing on fighting this, but they are not here to see that I'm starting to do what they needed me to do a week ago.

I love them and I know they love me and I suppose we have to work through this somehow, but for now I'm seeing my counselor this morning then I've got errands and phone calls.

I want each of you to know that if nothing else goes your way today, you've all helped a stranger on the internet

Beatmon

one thing to remember is all they see are all the pink ribbons and all the Positivity crap that we are subject to over and over. It wrongly makes it appear that early detection gives us all smiles, a cure and a run to take part in.

The MJ was wrong! But if You want it, go for it. Please don't forgo prescription drug help just because they were in favor of it. Many, many women on these boards have found a little bit of medicine does clear their head and help them see through problems that at this point seem insurmountable. I actually take a small mg xanax at bedtime to help quietedown my racing thoughts. Don't take it all during the day, but I'm glad I have it if needed.

It is a very very hard time you are going through now. It will be better once your plan for treatment is in place and started. Treatment actually becomes boring rather than nerve racking. The fun part of the day is seeing the staff who are generally very friendly.

It is a pisser for sure but you will make it through it. And if that ex has not paid your alimony that was leveled against him and health insurance why not find a lawyer on contingency and go for the money legally owed you! (Probably after you get the cancer and move taken care of)

Best to you and please continue to come here for support.

Brightness456

No, my ex has always been financially generous and consistent. I suppose he was just ready to finalize the divorce and move on, but since this has happened, he's said he'll hold off while I get through this.

As for the MJ, that's not really my thing, although I have no problem with it for others and I might be willing to consider anything if I need it later.

I do have a question though. Am I correct in thinking that with a lumpectomy I'll need focused rad at the site and chemo, while with a MX, I will only have chemo, and if I have lymph involvement, I need rad on that regardless of the surgery? I was thinking about it earlier and wondered why if you have a bilateral MX, you still need chemo. Isn't it all cut out at that point? I guess because it could have started to spread out into some other part of your body?

Anyway, today has been closer to my normal personality. Not there, but noticeably closer. I guess I'm debating just getting the lumpectomy, but needing rad vs just biting the bullet and getting rid of them both so I never have to worry about this again. Probably extreme thinking though, right?

None of my family has reached out today, which is quite hurtful. I feel strongly that it was unreasonable to treat me the way they did. The good thing is I was able to call the surgical coordinator and ask questions today. I saw my counselor and she said it's totally reasonable to spend a week grieving and not being at my best.

I'm sad and afraid still, but I'm not devastated and I'm not hopeless anymore. At least not today...

MinusTwo

Back to the drug thoughts - I asked my MO about a glass or wine or a gin & tonic each night and he was perfectly OK with that. Although he did recommend that I might want to skip a drink on the day of chemo, he had one patient who was a fellow doctor who immediately went home after chemo and drank three large vodkas.

I have Xanax and I took one for each MRI and CT and PET/CT. No way could I sit still the necessary amount of time w/o jumping out of my skin. But you will have to have someone drive you home if you take it.

I also have Sonata for sleeping. I requested just the 5 mg and my doc was happy to prescribe. You can take as late as midnight or 1am and still wake up by 6am with no dry mouth or groggy feelings. I think in the last 5 years I've taken maybe one pill a year when I absolutely had to get to sleep & my mind was racing.

You're doing great Brightness. This is not the time for you to be responsible for convincing family that everything will be OK. It might be different if your kids were pre-teens, but they are grown. You must focus on YOU & be totally selfish for now. Hope it went well with the counselor.

ElaineTherese

Re: chemo -- just because surgery cuts out the lump doesn't mean that cancer cells haven't escaped from the lump and have entered the bloodstream and/or lymph system, looking for a new home. If your breast cancer is HER2+, it is likely Grade 2 or 3, which means that your cancer cells have been dividing relatively quickly.

Cancer is a systemic disease, not a localized one. Chemo provides systemic treatment, and is supposed to help prevent metastasis to distant sites (bones, liver, lungs, brain, etc.).

Spookiesmom

I had the works. Chemo, surgery, rads. I had 11 nodes out. Prior to all of that was more tests than I can remember. I felt like setting up a camper on the hospital grounds. The purpose was to see if it had spread. Thankfully it hadn't.

I chose to have BMX, for the same reason you said. I did not/will not do recon. My choice, everybody is different with their reasons for or against.

I am being watched for reoccurrence for the rest of my life. Just got my labs back today, 5 years later still NED.

Glad you're feeling better, keep on keeping on

Brightness456

Thank you. I'm confused though. You had BMX, yet they still check you. Is that because it was in the nodes? I guess I was thinking if I went ahead and had them both removed, I could rest easy. Well, other than other types of ca popping up, but I thought that would remove the risk of any breast ca.

Geez, you really have to be smart to navigate this disease...

ElaineTherese

A bilateral mastectomy does not guarantee that you will never have a recurrence; breast cancer cells can move to other parts of your body and set up shop. Moreover, a bilateral mastectomy cannot remove all of the breast cells. So, even a local recurrence is possible.

At best, if you get a bilateral mastectomy, you don't have to have mammograms anymore. For many women, that's an advantage because they would rather avoid the anxiety that accompanies those scans.

kira1234

Brightness I'm stage 1 and just had a reacurrance. I chose to have a BMX no reconstruction. I'll also be watched for the rest of my life. I will continue with blood tests 2 times a year. Check my diagnosis. Both times very early

Spookiesmom

And I still have the port. I don't loose sleep worrying about recurrence but figure that's one less thing to do if the ca comes back. I go for a flush every 2 months, see MO every 6 months.

It's just a blood draw, the vampires take gallons to check on all the other stuff wrong with me. No biggie.

And yes, no more mammos.

MinusTwo

There is no cure for breast cancer. Whatever treatment you decide on, you will be watched for a long time to come. You can get to NED (no evidence of disease) but there are no guarantees. I chose BMX because I didn't want to ever deal with it again. The stage (DCIS) indicated that I didn't need any further treatment. I had clean margins & clear nodes. Unfortunately there was something like a micromet that escaped - so two years down the road I had a local recurrence in a lymph node up by my collar bone, only it had morphed to IDC. And HER2+, so chemo before ALND surgery & more chemo & rads & herceptin for a year.

My MO checked me every 3 months for the first year. Now he checks every 6 months. At five years, he will move me to every year. At first there were some CT scans. Now it's mostly complete blood work and a physical examination.

mustlovepoodles

Brightness, it sounds like its time to pull back from your family. For whatever reasons, they are unable to support you in a way that is helpful. I am completely aghast that they would even THINK about drugging you. Holy crap! No help at all is better that that kind of help.

My family was mildly concerned when I told them I had cancer. Of course, I played it pretty cool with everyone. Told them not to worry, I'm not gonna die. And they totally bought it. My kids were mostly oblivious and my sisters pretty much ignored the whole business. My brother called me up twice, drunk and blubbering about how he'd kill himself if I died. I had to stop taking his calls. And my mother--dear God. She used to tell me stories about other women who had cancer and they all ended with a hearty "AND SHE DIED!" I had to limit my conversations with her, too. The one and only real support was my husband and even he dropped the ball when I was hospitalized for sepsis, very sick and in excruciating pain. "Aren't you just over-reacting?" No, you idiot. I'm dying here. Go straight to hell and leave me alone.

I had to have a BMX due to gene mutations. I did not have reconstruction. I really thought I'd be okay with it--after all, im 60--but I'm decidedly not okay. I feel very disfigured and sad. I will be pursuing DIEP recon later this Fall.

LisaAlissa

Hi Brightness,

As you consider your treatment decisions, you might find Beesie's post on LX vs MX vs BMX helpful. It discusses some of the research, as well as a list of things you might want to consider. Some of those might be important to you, others not.

The nice thing about the post is that it doesn't try to push you one way or the other. It simply lists some of the things that have been mentioned by others as being important to making their decision.

As long as your doc has offered you a choice, the choice you make will be the right one for you! That list (and the process of thinking through it) is a good way of working out which right choice is YOUR right choice!

HTH,

LisaAlissa

ChiSandy

Hi again, Brightness.

I am a child of the Sixties, where the prevailing ethos was “Better Living Through Chemistry” (that was the motto plastered all over the DuPont pavilion at the ’64-65 NY World’s Fair). That was not for me. But suddenly, I had intractable dysmenorrhea, so I was on the Pill for several years, still a virgin, even before my first kiss. My dad was bipolar and then had three heart attacks in as many weeks when he was 50. Our kitchen counter looked like a pharmacy. Smoked my first joint senior year of college—and realized it really didn’t give me anything but paranoia and asthma. One New Year’s Eve after graduating from law school I went to a party and was dosed unknowingly with acid in the pink lemonade. I vowed I would never take any kind of psychoactive drug, so long as God would give me my brain back. I never even got drunk till I was 32 (and it was an experience I cared not to repeat).

Then, suddenly, eight weeks after my son was born, a dark filmy curtain descended before my eyes—like Sylvia Plath’s proverbial “bell jar.” The shrink explained that when carrying a boy, testosterone can cross the placenta into the mother’s bloodstream—it’s a two-way street. Testosterone is the prototypical steroid, an “upper” par excellence. But eventually, after delivery, the “happy juice factory” moved on, and when all the testosterone disappeared, I crashed resoundingly—and being 34 and a new mom, self-doubt also made me anxious as hell. So I, who swore never again to take anything that would alter my mind, began the delicate dance of finding just the right cocktail of antidepressant and tranquilizer to draw me out from funk to functionality. And sure enough, though it was a long process, it worked.

Depression and anxiety are every bit as physiological as they are psychological—perhaps even more so. There is no shame in balancing the brain chemistry to be better able to navigate and manage the stress—it’s not an “escape” nor a “crutch.” If you need it, you need it. If it helps stop the paralyzing fear and helps you be “you” even as you acknowledge your legitimate fears and work around and through them, well that’s what it’s there for. It is no more “immoral” to get you back on an even keel with pharmacological assistance than it is to take aim at tumor cells with chemo and radiation.

And if others disapprove or can’t handle that, well screw ‘em…till they can. They’ll come around. But don’t make yourself more of a wreck agonizing about what others think.

Brightness456

LisaAlissa, that site was very helpful. Thank you!

My oldest daughter texted last night that she hoped my day was nice and I was feeling a little better andmthat she loves me. I responded appropriately, but didn't try to engage in conversation. Maybe everyone needs some breathing room for a few days.

I'm having a hard time understanding the whole lumpectomy/MX/BMX reasoning. If BMX doesn't erase the risk and the risk is still the same, why would that be a reasonable option? Solely to avoid mammos? And are the blood tests as good an indicator of potential recurrence? I do understand possibly avoiding rad with MX as opposed to lumpectomy.

I'm taking in everything everyone has written. I appreciate the feedback and support

I slept pretty well for 7 hours straight! And I woke up and started thinking about it, but not in a hysterical panic way. Thank goodness for real rest...

ElaineTherese

Hmm, it is the case that a bilateral mastectomy reduces the chance of a LOCAL recurrence when compared to a lumpectomy. However, patients who opt for a lumpectomy + radiation do not have a greater chance of metastatic cancer (cancer that has set up shop elsewhere) than BMX patients.

I chose a lumpectomy because you can always take more breast tissue later. However, once your breasts are gone, they are gone.