Calling all TNs
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MRI yesterday, done. So uncomfortable lying on my stomach with arms overhead for 25 minutes and not moving. I used my "gentle" breathing meditation techniques (can't breath too deep or else I'll move too much) and mental distraction. Don't have results yet, it was done late in day so hopefully radiologist will read it today (wed) and mo will call me tomorrow.
seraphina, I understand your concerns, In my R good breast I get twinges, feel lots of densities etc so always nervous about scans but mammos, US, and mri's have not shown anything of concern, but then why am I always concerned? I do feel great otherwise though.
Keeping Annie in my thoughts.
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sfgirl, can you encourage your friend to be more proactive in terms of asking questions? Is she being treated at a major cancer center? Did she get a second opinion before starting? Would she be comfortable having you accompany her to the next visit for moral support while she asks questions? I'm surprised that she is only getting manual checks every 3 weeks--my MO does a manual every week and I had an ultrasound after 4 AC cycles.
Shopgal, I sympathize with your decision making process. It can be confusing and dispiriting. Take your time--a break seems well earned. I haven't had surgery, yet, but I know I'll face that decision in meetings with my MO and surgeon. I hope you get lots of feedback from those who've been through surgery.
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Lisa,
Thanks for sharing your yoga teachers hand outs, that is creative and what a wonderful message! Hope your MRI results are in soon so you can take that deep cleansing breath . . . and sigh it out with peace.
Anne
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sfgirl, if I were your friend, I would be asking questions, not waiting for my team to tell me things. I made lists of questions before each appointment. It's never too late for a second opinion either. If she's not comfortable with her doctors or their decisions, go ask another doctor, preferably at a larger cancer center. All my best to her.
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Hi Guys! So much going on!
Cocker, you, your family and friends are in my prayers. May you all be surrounded with love and peace.
Meadow - ugh! One step forward, two steps back.
DiV - It sounds like you are on your way with treatment. Remember lots and lots and lots of fluid. Water, water and water. If you can't get the water down, ask for IV fluids. I went in and had to have IV fluids just to stay hydrated. I drink lots of water, but with the treatment, I was sleeping so much that I wasn't taking in enough fluids. And I always felt so much better after an IV.
And in my world... more lumps. GRRRRRRR.... Ultrasound today confirmed two lumps. Good news, I'm not crazy, there clearly are two lumps. Good news, the two new lumps look like the last lump that was removed (b9 breast tissue). The bad news - the location of new lumps are such that doing needle biopsy is very, very, risky to my implant... grrrrr... So after many questions, much discussion we have determined the best course of action is to wait and see what the lumps do. We have very good baseline measurements and in 3 months we will measure them again. They could be B9 or they could be something else. The good news is cancer is not an instant death. (I know bizarre way to look at this...) And so, I am comfortable with the plan. My family, not so much. That is what is so difficult about this stupid disease. It impacts more than the patient. I'm feeling fine - great actually. Nothing showing in my nodes, no pains, no clinical indications except the lumps. My family wants them out... I just went under the knife in October. And as I told them... I'm tired of the knife. My body seems to like to produce lumps. If we cut out every lump I get we could be doing this every 3 months for the rest of my life... and then there is the risk of infection, the recovery, the 6 weeks post op of doing no exercise, no lifting, no nothing. I cannot live this way! It isn't the life I want!! So in 3 months, if they grow or change I'll make decisions based on that. If they stay the same... they can stay FOREVER.... BLAH! And as I type this I am second guessing my decision. BLAH!! I do trust my doctors. They haven't misled me yet! Stupid CANCER!!!
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Thank you for replies and advice, and support
Just today, my friend told me she was "upgraded" to stage IV and being treated with IXEMPRA (ixabepilone). They did not find mets but her cancer spread from the breast to nearby tissue. Taxol has failed, as they told her.
She's really depressed about all this.
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Blah sfgirl! That stinks! You might want to reach out to the stage IV groups. There are ladies that have fought this for 10+ years and have a wealth of knowledge. You are a very good friend to be reaching out to these groups on her behalf. The best friend I had thru treatment didn't always have the words to say to me, but she was always there. Just there... She listened, she hugged me, she just was there. Prayers for you and your friend.
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Back to check on dear Annie. Sending you lots of love Annie. The card shower is a lovely idea.
Thank you all for the kind messages of support about losing Mom.
Luv - glad to hear the lump is disappearing
Gr1965 and CandyRyan- this group is a wealth of information and support. Sorry you have to join but welcome.
Loves green things - your mention of zings and pangs reminded me of something funny I had forgotten.
The day after my lumpectomy, I was brushing my teeth in the bathroom and I could hear this odd sound of water running or sloshing? My first thought was... Oh shit, the toilet is broken again! Nope toilet is fine. Went back to brushing my teeth, and again I hear it, so now I check the washing machine. Nope all fine. So I turned the faucets off in the sink and started brushing my teeth again.....to discover the sloshing sound was coming from my breast!!!! Apparently there was so much fluid in my surgical site that I sounded like the ocean. (Would have been nice if they had warned me of this possibility). For those that don't know me.....I have a very bizarre sense of humor. Since it was Christmas time, I took my phone and took a voice recording of me playing jingle bells with the sloshing of my breast. I sent it to some equally crazy friends and asked them to "name that tune" and the instrument it was played on. A few got the tune but nobody got the "instrument". Laughter is the best medicine!
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Oooops, forgot add
DIV I hope you are doing the best possible
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Kathrynn, your "Name that Tune" antic sounds like something I would do! I appreciate your quirky sense of humor. :-)
Lyn
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Information for All New Diagnosed or Existing Members:
Yale University has just launched an "Introduction to Breast Cancer" course on Coursera. Coursera is part of the MOOC (Massive Open Online Course) spectrum. Course is free ONLINE, unless you want to have a validated accomplishment certificate, then you submit a payment for $49. Courses at Coursera are typically very highly-regarded and informative, taught by official University Teachers from each perspective school. This one starts Feb 6th, but usually once you click "enroll" you can start right then, and you can always go at your own pace, even once the set schedule has ended.
This course is taught by a Breast Cancer Surgeon. I'll include the description here. Sounds like a great place to get a strong foundation on learning about breast cancer, as well as survivorship information. Thought of all of us, especially when newly diagnosed, and learning all the aspects of breast cancer. As a 5+ year survivor, I'm going to take the course as well as a refresher on information, and to get any new personal strategies. From past experience in some of these courses, it's usually a video you watch once a week for the assignments, and you can go quicker through the course if you want. Everything is preloaded. Before joining, you can see the syllabus to see what is covered each week in the course.
Course seems comprehensive, in that it provides links to resources for information, right in Week 1.
https://www.coursera.org/learn/breast-cancer-causes-prevention
About this course: Welcome to an Introduction to Breast Cancer! In this course, we’ll learn a bit about the leading cause of cancer in women worldwide – from the basic biology of the disease, to risk factors and prevention, to treatment modalities to survivorship. We’ll talk to leading experts, explore some of the milestone studies that have pushed this field forward, and have interactive discussions on discussion boards and social media. You’ll even have an opportunity to let us know what topics you want to cover on tweetchats, so we can try to make the content fit your interests.
There is something in this course for everyone – if you’re a breast cancer survivor or the friend/family member of someone with this disease, this course will help you to better understand this disease, and give you ideas for questions you may want to ask your doctor. Maybe you’re a healthcare provider or studying to be the same, this course is a great refresher on where the state of the science is, and we may even be able to offer continuing medical education credits for completion. If you’re a healthcare administrator wondering about how the interdisciplinary components of breast cancer care fit together, or an entrepreneur thinking about unmet needs in this space, or someone in public health interested in prevention, this course is also for you!0 -
Thanks for the information about the Introduction to Breast Cancer course, InspiredbyDolce. Have you ever taken a Coursera course?
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Yes, very well outlined and knowledgeable courses.
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I want to send Annie a card and I am just now seeing this, can you please send me her addy.
Thanks and God Bless!!!
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Luv - so very happy to hear your doctor thinks all is well. I hope you're able to get your IBS under control soon now that you've got some peace of mind.
Lisa - you look beautiful! It's great to "see" you! Do you have any results yet? Sending you love and hugs. xo
Marsha - huge congrats to you on 4 years!!!
Seraphima - that is certainly a stressful situation to continue to be in. I can only speak for myself, but I would elect for the mastectomy for the reasons you said. I wouldn't want to worry about additional follow ups on lumps, biopsies, waiting on results, etc. Having had a double mastectomy, I can say it was much more do-able than I ever imagined. The hardest part was regaining full range of motion. That did take a good 8 full weeks, but I was certainly able to wash my own hair and such within the first week. Regarding reconstruction, I considered living flat, but ultimately realized that was simply my fear and wanting to avoid of one more surgery. That one more surgery to exchange out the expander for the implant was quite easy. My reconstructed breasts are no where near perfect, but I look great in clothing. I would have been okay living flat, but for me, the reconstruction helped me move past the trauma. It's a highly personal decision though and I wish you the best and you weigh your options. xo
sfgirl - I'm so incredibly sorry for your friend. I agree, the stage IV groups would be an excellent source of support and information for her. You're an amazing friend to be here asking questions on her behalf. Sending your friend, you and her family prayers.
Curly - how frustrating!!! I'm so sorry!!! I can understand your families concerns, but you have to do what you're comfortable with. They will come around and understand. Sending you lots of love! xo
Meadow - hoping you're feeling better and better each day. xoxo
Annie - All of my love to you. You are never more than 2 thoughts from my mind. Sending love to your family as well. xoxo
Love to everyone else in treatment and beyond!
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Hello everyone. Had my six month checkup with my Oncologist and he said I'm doing great! So that was a relief! I go back in six months.Hope eveyone has a good day!! Thinking of you all and praying always!!
I hope Annie is hanging in there! Annie, we love you so much!!
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Wonderful, luvmydobies!
Lyn
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Huzzah Luvdobies, that's great news!
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Lovedobies👍👍👍
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Yay Luvdobbies!!!!
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great news Luvmydobies. You must be so relieved. X
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Great news Luv!
Hi Lisa! Good to 'see' you! Hair looks great! (soooo, - do blonds have more fun?
)Hi Ally and everyone! I hope you are all doing and feeling WELL!!
hugs from NYC!
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Hi everyone
Just when I start to think on a positive note, I get something to set me back. I'm post menopause, and now have scant bleeding for a few days. Going to OB/GYN tomorrow. I know she will do a vaginal ultrasound. Could be a fibroid, I have one I know of, but good grief. Will it ever end. Trying not to go off the reservation, because the future will come no matter my outlook, but i'm really bummed out. I've had this before bc and it was nothing, possible thick uterine lining, had biopsy and everthing. Funny I had no worries then, but now not so much.
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I had to call the office on Friday to see if they had my results of MRI yet (test done on tues afternoon) and finally got call back that everything looks normal! Yipee, now I can relax, at least until 6 months when the mamo and us are scheduled.
And anotherNYC, I wouldn't know about blonds. Lol. My hair is gray although looks kind of platinum in pictures and in my avatar picture is does lookblond I guess.
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Congrats to Luvmydobies and Lisaj514!
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I did chemotherapy number 7 yesterday. I have one more to go. I'm feeling good, and I'm so thankful.
I had neuropathy symptoms after chemotherapy number 5 (which was my first Taxol treatment). I iced my feet and hands several times a day, and it went away in a few days. I have not had any neuropathy issues since. I still ice my feet and hands every now and then for good measure.
I forgot to post this earlier, after chemotherapy number 4, my medical oncologist sent me in to get my tumor checked (via breast mri), and my tumor had shrunk by more than 50 percent (so it's no longer 4.5 cm). Thank God!0 -
inspiredbyD- you were the metformin guru back when I starred taking it after I finished treatment. Are you still taking it now that you are 5 yrs out? I haven't seen anything recently on the determined benefit or not for tnbc. My mo was supportive of it at the time and I'm still taking it 850mg 2xday. I've seen the np the past 2 visits and not the mo (the np did not know about the potential benefit f it for TNBC) and I was going to ask the Dr about any new research supporting the use or not. She was going to ask the doctor about it. I am now 3 yrs out and not having any side effects from it so still taking it.
Any news or info from anyone on metformin? I know this gets revisited every once in a whole
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Lisa great news!
amw your post took me back. My diagnosis was really similar to yours and I also had an MRI in the middle of chemo, and also had 50% shrinkage of tumour at that point. When I got to thesurgery it had gone completely (PCR) so I'm hoping it will be exactly the same scenario for you. XX
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AMW5, happy for you! Glad you are feeling well and that Your tumor has responded.
Lisa, I see my MO next Thursday for a 3 month check up/mammogram. I will try to remember to ask her. She goes to all the big conferences.
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Today I had my 10th and apparently last Taxol.My breast cancer breast feels full and a lymph node under my arm is swollen.Apparently the Taxol isn't working. My oncologist said she felt shrinkage on AC. She never did any scans.I had abc ultrasound today and will hopefully meet with the surgeon next Friday.Hae suggested another PET scan(I had one before chemo) and asked me if I have any new symptoms,which I don't.This scares me.
Rhond
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