Let's start a group!

hiking3

Is anyone still doing this group?

hiking3

I am a counselor too. I have breast cancer.

Gorger

Hello Hiking3.
Yes, I am still moderating the group. It would be lovely if you started a topic. I welcome you to post something.
My oncologist told me that those that belong to "groups" live longer for some reason, so...let's do it! I'm excited to hear what you have to share.
Signed Gorger(well...no more, I'm at my goal weight. Yahoo!)

Gorger

Hi Mary.
I am glad you are getting your eye doctor to check your eyes while you are on the Tamoxifen. It did permanent damage to my eyes. I now have cataracts and I had angle closure glaucoma caused by the cataracts that were likely caused by the Tamoxifen and I was about 2 weeks away from going blind. I had to have laser surgery to stop me from going blind. ( I am not the usual case so don't worry too much about it ) but make sure that the person who checks your eyes has the right equipment as my optometrist first missed it. Only my ophthalmologist found it. Thank god!
You mentioned that you feel grumpy and exhausted. Those can be symptoms from the Tamoxifen. Personally I think Tamoxifen is like the old birth control pill. In the 1970's the Doctors prescribed a huge dosage. I personally believe that the dose of Tamoxifen is too strong. They give the same dosage for a 300 lb. woman as they give to a small person. My oncologist asked the pharmacist to give me two smaller dose pills a day, so I took one in the evening and one in the morning and it helps stop the "crankys". It's easier to take and doesn't give you the big cranky pill once a day. I looked up some Italian studies that say a lower dose works so I wish they would do studies on lower dosages. I am going to talk to my oncologist about that soon.
I then took Letrozole which may have caused me to have a stroke. I am not lucky with drugs. I had trouble with balance and speech . It has taken me months of working out at the gym to get back to normal and I used hand drumming to get my cognitive skills back. It's been a nightmare for me.
You mentioned being scared all the time and feeling like your time is short. We are living on borrowed time - luckily we were able to catch our cancers in time so I am very thankful to have additional time in my life. If you look at the old graveyards from the 1800's, most people didn't live past 30. It's only in today's time that we have expectations of living to 72. I try to turn it around and rejoice that I have today to be in the world and enjoy my kid. It's an extra day that I wouldn't have had if I was born 50 years earlier and had the same problem, with less treatments available.
The trick is this: Ask yourself this: "What would I do if I didn't have this cancer." And then do it! Make a bucket list of all the things you would regret if you were lying in palliative care and start working on them. It will keep you so busy you won't be able to have time to worry. I have parties, travel. Every time I have another scare I am reminded of what is important to me- and then I do it.
We are all going to die regardless of cancer. People just have their heads in the sand about it. The only difference is that we have the insight and experience to know differently. Now, with that knowledge, what are you going to do about it?

SuzieQ430

Thanks Gorger for all of your advice. I meet with my oncologist in November to discuss Tamoxifen and get put on it. I am scared at all the possible side effects of it. I already have cataracts, so I wonder how quickly I will need surgery once I am taking tamoxifen. I am glad that I read your information about splitting the dose up into 2 a day pills rather than 1 pill a day. That is something I will have to discuss with my doctor when I see him. I don't want the "crankys".

I have found that because of my cancer I am doing more things now than I did before. I guess I finally realized how short life is and it was passing me by. You are right, if you keep busy, you don't worry about it. It is when I am not busy that the worry creeps in.

Gorger

When offered a drug or a treatment, I always ask what my statistical increase in life expectancy is. Each person is different and they can calculate the benefit the drug will have. They won't always tell you unless you ask. I ask because I want to know- before I take a drug or treatment- so I can weigh out the risks verses the benefits. The half pill in the morning and the half pill at night is WAY better.
Another way to fight an estrogen receptive cancer is to lose weight.

mbryanlpc

Hi Gorger, Hi everyone, Hi Hiker, fellow counselor I am so relieved to see you guys back. I was starting to worry this group had broken up. I am doing better now. I started taking Effexor, which has 2 benefits, helps the depression, and helps the hot flashes caused by the Tamoxifen. I am emotionally better, almost done with my radiation, just 2 doses left!! Last week, all the skin came off the radiated area, very gross, kept me home a couple of days. But, I am starting to see real healing now (they are doing the last 8 doses of radiation in the scar area only, allowing the rest of the skin a chance to heal). Gorger, your advice is so true, and my main goal is to get to see my daughter as soon as is humanly possible. It may have to be Thanksgiving (she lives 8 hours away), but it is happening soon. I talk to her daily - trying to get her to follow through starting mammograms this year (she is 28). Since I am under 50, and her paternal grandma died from stage IV breast cancer, they want her to start now. She stays busy, but my daily nagging will get her there Another thing I have done that I love is, I went Halloween costume shopping. As of last Wednesday, I have lost 61 pounds!! So, this year, rather than hiding my fat, I am showing off my new physique, and going to be Supergirl!!! Anyway, I hope you are all well. I will check more often. Again, so relieved you guys are back!!!

Gorger

Thank you for keeping in touch. It sounds as though you may want to consider getting checked for the BRCA1 or BRCA2 gene if you are worried about your daughter and you have breast cancer in your family. I had genetic testing and apparently don't have the genes.
Stats show that Mammograms do miss a certain large percentage of cancers. Isn't it approximately 17 to 23% that don't show up?
Mine didn't show up either time. Apparently if you have dense breasts, it doesn't always appear on the xray.
It might be beneficial if you tell your daughter to check herself manually. So many people rely only on the Mammogram and they don't check themselves by hand. When my lump didn't show up on the Mammogram my doctor said I had nothing to worry about and when I insisted on a biopsy and he was wrong, it was a big surprise for him.
I find a good alternate way of manually checking is to do that Yoga position called "down dog" and let everything hang downwards - then you can feel for lumps better than if you are always lying flat on your back. It's not an easy manoeuvre but you will figure it out when you try. It is amazing, you can feel every little thing that way.

SuzieQ430

Gorger, thanks for the advice on the downward dog position for examining breasts. I have dense breast as well and my cancer did not show up on a mammogram, only an ultrasound. It took the doctor almost a year to find my cancer, and by then it had spread to the lymph nodes.

Gorger

Wow!

mbryanlpc

That's a really good idea. I am starting yoga class soon, so will figure out if I can do it. Thanks

TBYessa

Hi, all! It's been a long time since anyone posted so I'm going to assume you're all in a groove and loving life. I was diagnosed in 2018 with Triple Negative Breast Cancer and finished treatment that November. I have to say it feels like a movie I watched and not real-life. I think I compartmentalized the situation to power through it. My son was 3 yo at the time and I didn't want to believe it to be true. I've done okay since then, but never really got the extra 15-20 pounds off. My bloodwork was a little haywire the past year so my onco started testing for tumor markers...one of the markers is elevated and now I'm back to anxiety. I've had a PET scan, brain MRI, and CT scan of chest and abdomen, but my onco said it takes a million cancer cells to clump together to show on a scan. I have to get my mind right and take responsibility for my health. I was on a lower carb way of eating and the tumor marker went down a smidge so I want to follow that route and see how it goes. I've had a blip in my accountability after we went to Hawai'i for a week and then on spring break to see family. It has been difficult since I've always used food to soothe anxiety and stress. It's always something!