What in the World is Going On!?

cbdowel

Just received a call on Thursday at work that I have invasive lobular breast cancer. Had gone in for my first mammogram thinking I was 41, and just checking a box for routine care. I have been floored, devastated, crazy with paranoia and grief since and it is only Sunday. The only other info she gave me was that my “mytotic index” was low and that my something category was 2, intermediate which she said were both good findings. She said I am scheduled to meet with the surgeon on Tuesday, but when will I know more?? Every single existing ache and pain has my mind spinning that its spread. I was so fatigued yesterday I thought I was dying and woke my s.o. up at 4 a.m. asking him to google if we should go to the ER for my fatigue since I have sworn off googling myself. I really do not know what is next, how to think straight, or what to think. I am going mad.

Cindy

AnnC2019

So sorry to hear Cindy. It is really hard when it happens. It is true what others say, that once you have a treatment plan in place it will help. You will have good times between moments of despair and anxiety about the future and still be able to enjoy life. I enjoy my life even with the cancer parasite vying for attention intermittently.

I suddenly have a problem with my eye, most likely caused by anastrozole that could cause me to lose vision in my right eye. honestly, besides shedding a few tears and worrying I am just going about business of the day. You develop a resilience that helps you keep going.

The best of luck to you in the coming weeks. I got through the mastectomy and radiation fine. It seems really scary but once you’re in the middle of treatment it isn’t so bad

gb2115

Hi Cindy, sorry to hear about your diagnosis. You'll know a lot more once you see the surgeon. It's normal to be hypersensitive to every ache and pain, and definitely fatigued. Don't go to the ER for fatigue, they won't do anything for you. Do let the surgeon know, but honestly, finding out you have cancer really takes it out of you. I don't think I slept for weeks. But it turned out ok. Hang in there!

Dani444

Cindy, I am sorry you have received this diagnosis. Getting this diagnosis can no doubt just wear you out. I can remember waking in the middle of the night and it taking about 5-10 seconds then I would remember, crap, I have cancer. Then then the anxiety would keep me awake. This is really a hard time, the time between diagnosis and getting more information and a plan. You may have some more testing to do before you come up with a solid treatment plan but your first appointment will give you tons of information. If you can take someone with you to help listen to what the doctor is saying, it gets overwhelming and it is very easy to forget the details. Here are some links of questions you may want to ask your doctor.

questions

questions

There is a lot of great, up to date information on the main page here. There is also a forum for those with ILC that has good information. I hope you can find moments of peace while you wait for your appointment. I distracted myself by starting a binder with calendar pages, mileage tracker, and pockets for copies of my medical records, bills and such. I hit the craft store to find stuff to decorate the pages. I also would keep pages for notes, and write down questions as I thought of them. I took this to all my appointments. Feel free to come back and ask as many questions as you need, or if you just need to vent. We are here for you.

2019whatayear

Cindy that totally sucks. I hope you have your follow up appt super soon so you can get the whole picture and start your treatment plan. RE: fatigue. Make sure you are drinking water. Just being a little dehydrated can make you feel tired and being tired makes this harder. Deep Breaths. We are here for you.

AliceBastable

Cindy, sorry about your diagnosis. But look at all the fabulous people here who have been in your shoes (or bra 😁)! I found it very helpful while going through the various appointments and tests to do as many fun things as possible - concerts, picnics, day trips, weekend road trips - do whatever fun things you and your family enjoy most. Build great memories so when you look back on this period, it won't be just medical crap in your mind.

Beesie

Cindy, here's the first thing to know: Your reaction is absolutely completely normal. Especially the part about the anxiety and thinking that every ache and pain means that it's spread. And the fatigue... yes, getting news like this is a shock to the system, and it's exhausting.

At this point what you know is that you have ILC which is grade 2 with a low mitotic index. What that means is that the cancer cells are not dividing and multiplying quickly, and yes, that is a good thing! Since you went into your screening thinking that this would a standard baseline screening and then you'd be good to go, I'm guessing this means that you've been feeling well and had no indications that you might be sick. That's pretty normal too. But what that means is that you have no reason to believe that every ache and pain might be a sign of something serious. Normal aches and pains are just normal aches and pains, the same as you had before and the same as everyone gets.

But your mind, being in shock, is telling you something different. And being in shock, your mind might even be creating some of these aches and pains - psychosomatic symptoms are very common after a diagnosis like this, and they can certainly feel real. Once I understood that my aches and fears were just a normal reaction to the shock of the diagnosis, what worked for me, whenever I would start to panic or have bad thoughts, was to give myself a figurative 'slap upside the head'. I'd even visualize it, seeing the palm of my hand hit the side of my head (and the visualization usually brought a smile). At the same time, I'd remind myself that this feeling of fear and these aches were just the normal reaction of my brain to the news of the diagnosis. In other words, I created a simple way to talk myself down and I used it every time I started to feel anxious or upset or started to feel strange 'symptoms'. After a while it got easy to cut those thoughts off really quickly. That was a good thing, because it took months before my mind stopped going to those bad places. All perfectly normal!

Take care of yourself. Recognize that your reaction is normal. You don't need to push yourself. Everything - the appointments, the testing, the surgery - will happen. At this point, you just have to show up. There will have decisions to make but as you get more information and see your doctors, the pieces will come together. For now, just be kind to yourself.

Susi-Q

Hi Cindy, getting the diagnosis is definitely scary and I relate to the fear that your fatigue could be something serious. I had a cough right after I was diagnosed and thought the cancer had spread to my lungs (It hadn't). I called my internist and he calmed me down. He has been an excellent resource for me. Get a copy of your pathology report so you will know exactly what you are dealing with.