Newbie & scared

Never thought I'd be told you have breast cancer! I'm newly diagnosed and can't eat or sleep less than 4 hours a night if that.....Lost 10lbs from worry.......have surgery coming up.......worried about the lymph node biopsy....breast MRI showed enlarged axillary lymph node......oncologist said don't worry about it & then wrote all about it in his notes on my patient portal........It consumes you......I go to bed with it on my mind....I wake up with it on my mind..........Health is wealth......

@holykrap0 ER+PR+ and HER2- is good news because you will be able to treat with anti-hormonal drugs (aromatase inhibitor). They will do an Oncotype test to determine benefit of chemo but if your ER+ PR+ are high you can hope to avoid it.

Lobular can be harder to detect, I was told. There is a doctor at Dana Farber who specializes in lobular- Otto Metzer MD- and he has a good video online if you can find it.

Ativan helps get some sleep which helps so much. I didn't use it much but it helped to know it was there. And yay for Netflix!

I understand where you are coming from. I might still look to get a second opinion. If only to confirm it all in my own mind. If the second opinion feels the first doctor had it all right, then I might be able to relax a bit. I have a friend who said she would keep getting opinions until two agree. She got 5, lol.
Please keep me posted how you move forward, and how you are adjusting to your new membership in the survivor guild.

Thanks for your response. I have scheduled a second opinion. I feel more relaxed knowing that I have a plan of sorts. I know there is no "perfect opinion" but it will help to hear what someone else thinks. Also to see if they give the same answers to my questions.

Yes, I have many options, hypothetically at least, because I am on traditional Medicare. I feel like my questions were answered but after a while it felt like I was arguing as though I wanted chemo and it was clear that she was not in favor of doing it, or that I wanted a PET scan (or something of that sort) and that I wasn't going to get that. Since my only known tumor has been removed, I'm not sure what a second opinion would do, other than to re-evaluate the potential risk-benefit question.

As a little background, I had not been feeling well in a number of areas prior to the diagnosis of the TNBC. Some of these are in the process of being worked up, others are just mysteries, some treated. I won't bore you with the details but when a number of things in my body haven't seemed normal to me, I can't help but wonder if some of them could be related.

Also, I was initially told at diagnosis (by a breast cancer nurse) that I would be starting with chemo. However, when I saw the oncologist and the surgeon in separate appointments, they both said to start with surgery. So I went along. At that point, I hadn't read very much. Now I am understanding that it is a common practice to do chemo first to get a sense of its effectiveness with the patient's particular variety of TNBC and that sometimes, not always, it offers some protection against recurrence and gives additional information about prognosis. I wasn't told this or given this option and so I'm feeling like I wasn't given the chance to get this possible protection. My tumor is gone now (thank God) so that gives them reason to say there is no reason to do a systemic treatment that might result in serious side effects. So I understand their reasoning. But I'm also feeling vulnerable without either the possible protection and/or a look at whether there could be metastasis in other parts of my body (unless other doctors decide to scan me piece by piece). I realize it is unlikely with a small tumor found early but it still doesn't feel right.

I also see that part of my reaction is purely psychological - i.e. to spend two months getting used to the idea of having cancer (and an aggressive one, at that) and then having to switch my thinking to, no, I don't have cancer anymore and I don't need to do anything but be watched. Thank you to anyone who has read all of this. I need to spill it out to people who will understand.

To bpknitter: I am triple-negative as well. Do you recall what chemo you used? I am approaching the point where that will be discussed. I know everyone is different but I am interested in learning more about what others have used.

Yes, I have many options, hypothetically at least, because I am on traditional Medicare. I feel like my questions were answered but after a while it felt like I was arguing as though I wanted chemo and it was clear that she was not in favor of doing it, or that I wanted a PET scan (or something of that sort) and that I wasn't going to get that. Since my only known tumor has been removed, I'm not sure what a second opinion would do, other than to re-evaluate the potential risk-benefit question.

As a little background, I had not been feeling well in a number of areas prior to the diagnosis of the TNBC. Some of these are in the process of being worked up, others are just mysteries, some treated. I won't bore you with the details but when a number of things in my body haven't seemed normal to me, I can't help but wonder if some of them could be related.

Also, I was initially told at diagnosis (by a breast cancer nurse) that I would be starting with chemo. However, when I saw the oncologist and the surgeon in separate appointments, they both said to start with surgery. So I went along. At that point, I hadn't read very much. Now I am understanding that it is a common practice to do chemo first to get a sense of its effectiveness with the patient's particular variety of TNBC and that sometimes, not always, it offers some protection against recurrence and gives additional information about prognosis. I wasn't told this or given this option and so I'm feeling like I wasn't given the chance to get this possible protection. My tumor is gone now (thank God) so that gives them reason to say there is no reason to do a systemic treatment that might result in serious side effects. So I understand their reasoning. But I'm also feeling vulnerable without either the possible protection and/or a look at whether there could be metastasis in other parts of my body (unless other doctors decide to scan me piece by piece). I realize it is unlikely with a small tumor found early but it still doesn't feel right.

I also see that part of my reaction is purely psychological - i.e. to spend two months getting used to the idea of having cancer (and an aggressive one, at that) and then having to switch my thinking to, no, I don't have cancer anymore and I don't need to do anything but be watched. Thank you to anyone who has read all of this. I need to spill it out to people who will understand.

I appreciate all of the supportive replies. I think my emotions about this are complicated so I'm taking time to try to work them through. I think there is a combination of things - having only 2 months between diagnosis and dismissal is confusing. Just getting used to the idea of being a cancer patient when I'm told I'm not anymore. Of course, it is a good thing not to have cancer or to not need chemo but something in the way it was told to me rubbed me wrong, especially being told that I was "cured" and "cancer-free". At best, that seems an overstatement that cannot really be backed up.

There were other things that rubbed me wrong, such as being told there was only one kind of chemo that can be used and so it was either that (which would do great damage to my body) or nothing. She did later explain that "nothing" include close monitoring by a breast cancer nurse. Also, I may be feeling a bit of abandonment as she won't be following me anymore since I'm no longer a cancer patient. And she was 20+ minutes late for the appointment and blamed the copy machine (really?)

So, in a short period, I go from having something serious wrong with me to having nothing wrong with me; from having a supportive treatment team to having quarterly visits with a nurse. I truly am grateful that things are not worse, but I also have a sort of anger and grief to work through, as odd as that may sound. I won't be surprised if my 2nd opinion matches the first, but I'm hoping that any conversation that comes out of it will have a different flavor.

As a note for anyone else going through something similar: I'm a psychologist and I know this sort of paradoxical reaction is not so very unusual. I once knew someone who was considered terminal and, in the middle of mentally adjusting to impending death, got better. It was a rough road for sometime after that. Our emotions can go in many different directions at once and I tend to think it is better to ride the waves than to pretend the waters are peaceful if they're not. I am who I am and I trust it will get worked out in the end. (I'm not saying I FEEL that way at the moment, but that's what I believe.) Again, thanks for all the sharing.

@mkb4435 I know how you feel, but you are still a cancer patient with check ups. I don't see my oncologist at all but she told me she is my "oncologist for life" which was comforting!

I would not, personally, trust a doctor who used the word "cure." That is imprecise and has emotional consequences.

I did not have chemo but my oncologist considered chemo for me, and I have accompanied friends to oncology appointments. My impression has been there are several possible regimens. Again, this doctor may be imprecise in language and may mean they consider one drug to be most effective. Is that possible?