Topic: Stage 2 Sisters Club

Oct 4, 2019 11:13AM MexicoHeather wrote:

2020 Retreat LPHOH

Hi. Retreat opportunities for Little Pink Houses of Hope are listed for 2020 on the link above. If you are currently in treatment or have recently finished, take a look. It's is focused around a free, week-long retreat for you and your family. 🤩🤗I have volunteered with them for two years and they are fantastic people.

Oct 17, 2019 10:00PM MexicoHeather wrote:

they make a good lemon balm, too. I will give it a try.

Oct 22, 2019 08:10PM runor wrote:

Trying to keep my head above the water and not let the waves of depression / panic close over me, but I think I'm losing the battle. Was supposed to have my annual mamm in September. Began trying to not think about it in August. Tried not to think, the mamm is coming, the mamm is coming. Used to be I had a mamm and walked out knowing that cancer happened to other people. Well that happy little bubble of delusion has burst. I do not feel safe. Because I am not safe. That is the truth. So I anticipated all August the mamm that was supposed to happen in September and all September passed without the phone call telling me when to come in. I phoned my doc about a week into October and said, basically, what the hell?! Oh, yup, he'll put a rush on that mamm. Here I am. Still waiting. Still trying NOT to anticipate that my life as I know it hangs on a thin, thin thread and that stinking mamm can tip me off my precarious perch. This state of clenched dread has now gone on for too long and I'm getting really grumpy, somewhat snappy, not sleeping anymore and daily feeling more and more desperate and yes, terrified. All those statistics start playing in my head like a nursery rhyme I can't shake, "radial scars have a 50% increased risk of breast cancer in the opposite breast..." Shit. I just had to say this. I am not keeping my shit together very well. I need to take my own damn advice but having a tough time of it just now. The mental noise that never quits. Tinnitus of the soul

Oct 22, 2019 09:13PM ruthbru wrote:

Runor, take HikingLady's advice and talk to your doctor about your anxiety. BC is an shattering diagnosis and it would be surprising if a person did NOT have any post-traumatic stress issues!!! We need to be proactive about our mental health as much as our physical well-being. Medications and/or counseling can be a godsend in helping you get a better handle on things. (Just a note, a mammogram delayed by a month or two is not going to make any difference in the long run. You should be proud of yourself for catching the mistake!)

As far as self-help goes; make a serious commitment to exercise, it is the #1 non-medical thing you can do to reduce your chance of recurrence. If you take a class and/or find a friend to workout with, it can actually be fun! Go on a shopping spree, update your wardrobe, try a new haircut/color; if you look good, you do feel better! Try some things you've always wanted to do but never took the time; join a Book Club or a choir, take cooking lessons or Spanish lessons or Tango lessons, or whatever! Plan a fun vacation with family or friends. Get a pet or volunteer at an animal shelter. If you are doing things that are interesting and engaging, you don't have as much time to sit around and think (plus you are tired at night so you will have a better chance to sleep). If this sounds like a pep talk, it is. When I was about as far out as you are now; I decided that since I had done, and was doing, everything I personally could do to prevent a recurrence; then either it was going to reoccur or it wasn't. If it didn't come back, I was wasting a lot of time worrying about nothing; and if (heaven forbid) it did, then I decided that I really better be getting out there and live while I could (which is actually what everyone should be doing, cancer or not).

Oct 23, 2019 08:31AM HikingLady wrote:

runor You totally have exercise covered in your life! Lots of people think that they 'shovel sh---' metaphorically while doing difficult desk jobs, but you literally do it! Sounds like a beautiful, rural life. Keep us posted after the mammogram. I'm all in favor of therapeutic yelling. I do plenty of silent inner screaming. Where I live, any louder would frighten the neighbors....

Oct 25, 2019 11:28AM pink_is_my_colour wrote:

Runor: I had to laugh when you talked about yelling at your dog to quit eating sh**. I have three toy poodles and they love to eat each others. In fact the male dog will try to eat it as it's coming out the end of the other dog. Then, of course afterwards, they want to lick my face. Well, no thanks to that. I feel your pain. I use to go to mamos and wonder what all the fuss was about. Not anymore. I don't know if the anxiety of the test will ever go away. I've learned to accept that there's going to be anxiety going forward. It's still early days for us in our recovery. It's a new normal which has its good points and its bad points. For sure I know I have to be on top of the medical profession at all times. I had a similar experience this spring with my mamo. I didn't get a call to say when it was scheduled. When I called they said there had been no requisition put through. Family doctor had faxed the requisition to the wrong phone number but no one followed-up to see if it had been scheduled. Now, I know, that's one more thing I have to make sure gets done each year. Hang in there girl. It will get easier. Sounds like you're going through an angry stage. That's good. Let it out. Once it's done then you can move on.

Feb 26, 2020 07:24PM Mariadelpilar wrote:

count me in too! So glad to hear about others’ experiences.

Feb 26, 2020 07:34PM nonomimi5 wrote:

Hi Stage 2 sisters - Can someone explain to me what is the difference between the stage and the grade? I was diagnosed at Stage 1 before but became Stage 2 after the surgery. I am assuming because it was bigger than they first predicted. Was does the grade represent

Feb 26, 2020 10:40PM HikingLady wrote:

nonomimi5 Hopefully your MO can explain your post-surgical pathology report carefully to you, because there's a lot to absorb, for sure....

Histologic "grade" is used to describe what the cancer cells look like using a microscope. Most cancers are graded by how much they look like normal cells. Low grade or grade I tumors are well-differentiated. This means that the tumor cells are organized and look more like normal tissue. High grade or grade III tumor cells are poorly differentiated. This means that the tumor cells don't look like normal cells. They're disorganized under the microscope and tend to grow and spread faster than grade I tumors. Cancer cells that do not look well-differentiated or poorly differentiated are called moderately differentiated, or grade II. (URMC Rochester-link below)

https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=85&contentid=p00554

Then, there's a further bit of information, called the proliferation rate, which is how fast the cells are reproducing or going through their life cycles.

https://www.breastcancer.org/symptoms/diagnosis/rate_grade

The stage can change after surgery (and the post surgical stage is the official one that counts), because of the size, location, shape of tumor, whether there's any vascularization or lymphatic organization near the tumor, and whether there's axillary node involvement. So, the pre-surgical staging is a guess, and then they refine it after the post-surgical path report. The staging guidelines have changed a bit over time, and they're usually established (in the US) by the NCCN (National Comprehensive Cancer Network).

Mar 18, 2020 09:00PM GoKale4320 wrote:

I recently had a bone density scan done, and today my primary care doctor emailed me. She didn’t have a numerical result, but she said I have osteoporosis. She is recommending a drug for it. Has anyone taken one of these:

Evista

Prolia

Zometa

How did you tolerate it? Any side effects?

I see the MO on April 16th. So will probably discuss it with him, too. Evista is supposed to have some benefits for breast cancer survivors so I might lean towards that.

Thanks for any thoughts about this.

Mar 19, 2020 01:48AM HikingLady wrote:

GoKale4320 Are you on an AI? That often does cause bone density to drop. I had osteopenia diagnosed before starting my AI, so I've been on Zometa now since 12/2018. It causes me no problems. I feel tired and slightly icky the day after each infusion, but that's it. I have the infusions every 6 months.

Mar 19, 2020 01:41PM bravepoint wrote:

GoKate4320 - I just finished 3 years of Zometa infusions every 6 months so 6 treatments all together. I felt horrible after the first one, so achy and sore I could hardly move. It got better with Tylenol and a day later I was fine. The other 5 had no affect on me at all.

Mar 19, 2020 05:23PM nonomimi5 wrote:

GoKale - Happy Birthday

Mar 23, 2020 12:25PM GoKale4320 wrote:

Since I turned down Tamoxifen post-treatment in 2017, I decided to take Evista because it is also a SERM, similar to Tamoxifen. Later, I can see about adding Zometa or Prolia ( Prolia is not covered by my insurance). So I hope I will get two benefits (bone protection and lower recurrence risk) with Evista.

I looked at NutritionFacts.org for more info on osteoporosis treatment with nutrition. Apparently, prunes protect existing bone and almonds help build bone. Legumes are also good. I will try to incorporate these on a regular basis.

This morning, I took my first dose of Evista. I will update again in a few weeks to let you know how it’s going.

Nov 9, 2020 11:20PM stephilosphy00 wrote:

HI, stage 2 sisters, I have been on hormonal therapy (Lupron and Aromasin) for almost 4 years. I just realized my onc had ordered BCI test for me to determine my late recurrence rate and my benefit of taking hormonal therapy for 5 extra years. I will need to pay at least $1000 out of pocket for the test.

I actually don't want to get the test, I think my young age and one positive node automatically put me on high risk of having late recurrence. I really want to stay on Lupron and Aromasin for at least 10 years or just as long as I can tolerate them fine. I am curious to know the results but I think end up it's all about luck.

Anyone here had declined BCI test and opted for 10 years of hormonal therapy? What's your experience?

Thanks!