Diagnosed this afternoon

Jen2957

I posted an update in the Waiting for Results topic thread, but I guess I have graduated up to the “Just Diagnosed” Forum. I had core needle biopsies done on four lesions one week ago today, and the results came in this afternoon.

There was one lesion on the left breast and pathology showed that it was from benign, fibrocystic changes. Yay!

There were three lesions on the right breast:

One lesion on the right- the larger of the three at 10 mm - is a prior ruptured cyst with chronic inflammation. No atypical findings. Also yay!

The two other lesions were confirmed as IDC. Both the 7mm and the 9 mm lesions are listed as "Invasive Ductal Carcinoma, Nottingham combined histologic grade 2. Associated intermediate grade ductal carcinoma in situ.” Not so yay

Both malignant lesions are ER+/PR+ @3+ intensity and both are HER2- @1+ intensity

So…a little farther down the rabbit hole we go! I assume things will happen very quickly over the next few days and weeks. I would love to hear any tips for helping me become as informed and organized as possible to prepare for the options I will be presented. I have a binder I've been trying to keep everything in so far. And I have been reading some of the relatively recent new studies that have analyzed treatment options for various situations and whether there is a significant difference in outcome for certain combinations.

My biggest question for all of you who have "been there, done that" is, "what thing or things do you wish you would have approached differently and why?" I find such comfort in the supportive, but REAL discussions in this group and apprecaite as much insight as I can get.

oldladyblue

Hi Jen2957, Welcome to this topic, sorry you are here, but it will help to hear from other women. To answer your question: I wish I would have gotten a second opinion earlier as soon as my OncotypeDX test came back, and I wish I would have started chemo already. Surgery was scheduled pretty fast, but it will be over 2 months since my surgery (and over 3 months since diagnosis) before my chemo begins. I only read yesterday online that chemo should start within 4 weeks as waiting decreases chemo effectiveness which increases chances of getting metastatic breast cancer later on. None of my doctors told me that. Because I had a choice of chemo/no chemo, and then when I decided on chemo, a choice between 2 different chemos (AC or TC), my head froze up and I didn't make fast decisions. Then the waiting time for a port for AC chemo and a 2nd opinion on which chemo is right for me took over a month (and still hasn't happened yet). Now I regret the waiting time, I won't get my port till next Friday, and my 2nd opinion is next Thursday. I wish you the best navigating your cancer treatment quickly.

Salamandra

I wish I had got pharmaceutical anti-anxiety help earlier. My cancer center actually has a mental health unit and I could have gone there earlier, but I think any of my oncologists or even my gyn or family doctor would have been willing to prescribe me something temporary if I had been more honest with them (and myself) about the extent to which anxiety was impacting me. For me, ativan has been great, but there are a ton of options and a good doc will help you find the good ones for you (if this applies to you, if not, maybe it will to someone else reading).

I wish I had taken preemptive advil for my radiation set-up session. The doc recommended it but I forgot. Oops!

I wish I had waited to start hormonal treatment until after I was done with radiation. I was eager to start doing everything I possibly could ASAP. It turned out though that I had some serious side effects from my first hormonal treatment that I erroneously blamed on radiation. It probably would actually have saved me time in the long run to find the right anti-hormonal for me if I had been a bit more patient up front.

Related, I wish I had known that even though it's not considered "active treatment", the hormonal therapy can be even more difficult than active treatment. It took me a while to find the drug that worked for my quality of life, and it was very difficult in the meantime.

I wish I had understood how long it would take to get the full picture of my cancer. I felt like I kept getting surprised about all the elements of the surgeon's predictions about my cancer that actually needed some time/tests to be validated. (It turned out that for me, all her predictions were correct, but it took the full pathology and testing to know that).

Some things I'm glad I did as I did:

I'm glad I took time off of work from radiation. At the time, my job was very stressful and a huge source of anxiety all on its own. Physically I probably could have pushed through and worked, but emotionally, mentally, and logistically, it was really helpful to just give myself that break. If this applies to you and you are in the position to take time off (which I know I was lucky to do), I would say it's ok to give yourself that gift if you feel it would help. I had to take unpaid time off work for it, but my health insurance continued and I had enough savings and job security to feel comfortable doing so, even though I am single.

I'm glad I had friends come with me (either in person or virtually) for doctor's appointments, and that I had a good friend come with me for the surgery and the day or two after. I don't remember if you are partnered or not, but just because you/someone is not partnered does not mean one has to or should go it alone.

Related, I'm glad I was very open with my friends, social circle, and work, about what I was going through. I found kindness and support in places I did not expect, and I felt very loved.

I'm very glad I found these boards, participated in ongoing community threads, especially the radiation and starting hormonal therapy threads for my month, and used them as a research help. It has been priceless.

Of course everyone is different and the most important thing is to listen to your own heart. Good luck! For me, I ultimately found the physical aspects of cancer less trying than the mental aspects.

Moderators

Jen, we hate you had to join this forum. As you can already see, the members of this wonderful community are here to help with support and advice. Please, keep us posted on how everything is going, we're thinking of you!

The Mods

ceanna

Jen,

Sorry you now join us, but hope you find us helpful. It's a lot to take in at first. Glad you are starting an information binder. You may find it helpful to write down questions for the doctors as you think of them and then write their responses down so you can review later. If you are going to a breast center, make use of their nurse navigator to contact with questions and information. Get a 2nd opinion when possible or questionable. Often, it's okay to wait to get that second opinion. Don't Google and don't post on your social media. You will only receive a lot of opinion or false information that way. I found that telling only a very small number of people of my diagnosis was good for me. I didn't have to answer "concerned" people's questions because they didn't know my situation and I didn't have to hear what happened to their "great aunt." There are many great existing threads here about diagnosis, treatment options, and follow up that you can keyword search (see the Search icon on the left side of a BCO page). Otherwise, pose your question as a new thread and many will, hopefully, respond. All the best. (((((Virtual hugs)))))

oldladyblue

By the way, Jen, I posted that I was wishing my chemo had started already, but now 6 hours later I am wishing I hadn't agreed to chemo. I'm still waiting in the "land of indecision" for my 2nd opinion meeting which is coming up soon. This overwhelm of info and hard decision making is driving me into insomnia and a boatload of bad dreams and worries. So I can understand your worry.

Jen2957

Oh my goodness! I am repeatedly overwhelmed by the tremendous kindness and support from everyone. I have read each of your posts a couple of times and have made notes of some of the excellent advice you have given!

Oldladyblue: I was officially diagnosed four days ago, and it already feels like an eternity of waiting to get a surgical consult set up! That being said, I also feel weirdly okay to have time to process everything. I am most anxious about finding out if I have lymph node involvement so that I can know my official stage. I did kind of (darkly) laugh a bit at your follow-up post about completely changing your mind about chemo 6 hours later. I feel the same way about everything associated with this! Geez! It’s like having cancer-associated schizophrenia! Is that a thing? I think I’ll make that one of my new self-diagnoses. 😉

Salamandra: Thank you for your perspective and your honesty on the mental health challenges of this. If I could just get out of my head for 5 minutes, it would be great, but more than that- I wish I could control the anxiety spikes! I am already on Wellbutrin, but it doesn’t do a thing for these crazy, blind-siding anxious feelings. I also very much agree with not throwing every treatment at this thing concurrently bc it eliminates the ability to narrow down the cause of any SEs. I am tremendously thankful to have an excellent support system that includes my husband of 26 years, our daughter, my mom, stepdad, dad (though he is in Colorado and I’m in Ky), and others whom I can rely on to assist with anything I ask. My husband will want to be there to take notes for me as much as possible and as an exec of a VERY family-friendly organization, he will be given the flexibility to do whatever he needs to do in order to be there. I am a former high school English teacher, but retired myself 😂 a couple of years ago, so the difficulty of dealing with work demands is out of the picture- I can’t imagine how much more difficult it would be if I had to teach during this. I was also one of those gluttons for punishment who served as dept chair, on committees, etc- you know, the kind who needed to learn to say no. Lol

Ceanna: I have been going back and forth on the social media part, so it was good to read your perspective. On one hand, I want to kind of control my own narrative and perhaps further shed light on this process; but on the other hand, I don’t want to be seen as pandering for sympathy or attention (or every opinion of everyone I’ve ever known or may never know). The second opinion seems daunting, but necessary, I think. I am just beginning to try to figure out timing on that, so your insight on being able to wait a little bituntil I get a better handle on things relieves some anxiety.

moth

I did & do post on social media but control replies & maybe close comments on platforms that allow it. It is an easy way to communicate with everyone & I preferred it to responding to individual emails & texts.

It's hardest at the beginning. Hang in there. it gets better.

californiateri

Jen2957 - I found it very helpful when I was first diagnosed, to read the articles that are on the home page of this site. It helped me to understand the whole situation and was able to ask better questions from my doctors.