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 this is the hardest time. Once you have surgery and get more information on your tumor and treatment plan, you just do it. When is your surgery?

Many of us (even with a positive lymph node) do not do chemo. A test called the Oncotype will determine that. Do you have any info from your biopsy in terms of ER, PR and HER2?

I asked my doc for a few Ativan for the waiting stage you are in. You need sleep. Ask your doc for help with the anxiety you are suffering from. I took walks and watched a lot of movies.

I bought the Mayo Clinic book on breast cancer at that time and tried to avoid research until I knew what I was dealing with. There is scary stuff online that is outdated or wrong. Distraction is your friend!

Hi Friends. I'm feeling pretty upset after seeing my oncologist today. I know this sounds crazy as I should be overjoyed but I just can't trust the opinion she gave me.

I was diagnosed with triple negative (TNBC) invasive ductal carcinoma in early June, 2023. I was staged at 1B, grade 2. Genetic testing did not show anything worrisome. I was advised to do surgery first and I had a unilateral mastectomy; sentinel node biopsy show 4/4 nodes clear of cancer. My tumor was measured as .5 centimeters.

Today, 2 months after diagnosis, she told me that I am cured and cancer-free. I do not need to do chemo as I am low risk and the chemo could potentially do more harm than benefit. (She spoke as if there is only one chemo to be tried and nothing else to be considered but to be evaluated every few months.) She said that if I wanted a PET scan I would have to pay for it myself because no insurance would do so under the circumstances. I asked many questions and challenged this some. I see her point but I have not yet encountered anyone with TNBC who has been "cured" by surgery alone. I only read of how aggressive it is and feel like I would just be waiting for it to come back if I did nothing more.

I may get a second opinion but I would really appreciate some feedback, especially from others who have had early stage TNBC. Thanks.

Get as many opinions as you need to feel certain and reassured. I got 4! Is there a tumor board at the hospital where you doc is? Is it a teaching hospital? I understand that you wish you could feel relief at this advice and also understand why you don't, yet. But you may feel relief after getting another opinion(s). Maybe go to the best oncology practice you can get to.

Thank you for responding. Appreciate you! My surgery is 1 1/2 weeks away. Biopsy showed invasive lobular carcinoma. ER +, PR +, HER2 Neg......
Had a hysterectomy 12 years ago & was on a hormone patch with estrace vag cream weekly ever since .....I was feeding the dam cancer......I will get some Ativan for anxiety & distract myself.......
Great advice

I would absolutely be looking for a second opinion if this were me. Mostly because It feels like she didn’t really offer you the information you needed to understand her recommendations.
You always have a right to have all of your questions answered, it also feels like there should be more discussion about the whole cured thing.
Do you have an idea of an out of network option for a second opinion?

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 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.

I recently read an article about how cancer surgeons should never say "we got it all." And to use the word "cure" seems unusual for an oncologist.

Again, is there a tumor board or did this opinion on treatment come from just this one doctor.

Getting second opinions (or in my case four opinions) means sending surgical specimens around: each doctor will want to do their own testing. Some hospitals had me at grade 2, some at grade 3. What would the current doc say if you are grade 3?

The best doc I ran into gave my full information and then gave me the choices. I would keep going with at least another opinion, and a tumor board decision would also be reassuring. You can ask your current doc about that.

@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!