CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Mari ..good news that your surgery and recovery has gone so well ..Sorry there were some surprises with the pathology ..and your doctor didn't take the time to answer questions , and explains more to you .It's such a relief when all drains are removed !
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Mari, if it were me, I'd fine another mo. You haven't started chemo yet, so get with someone supportive and with good bedside manners. It's important. Any mo can write rxs for chemo. GL
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Mari, I echo these wise ladies. In your case a second opinion is wise.
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Mari, I "third" the rec for a second opinion. What you describe you were told doesn't match "T1N1M0" (tumor less than 2cm, one positive node, no mets). Demand a report writing e-mailed to you--the foregoing, as well as not telling you the exact stage, dimensions of each tumor and grade, sounds fishier than an aquarium. Heck, each tumor should have its own "T" size profile listed (T1a, b, or c--corresponding to <.5cm, .5-1.0 cm, and >1 but <2 cm). I assume your tumors are probably invasive ductal (IDC) or lobular, (ILC) but multifocality is more characteristic of DCIS; if you had both "Luminal A" IDC (ER+/PR+/HER2 neg) but one small T1b that's triple-neg, ask whether that one is DCIS. DCIS is quite often triple-neg. And it is almost never treated with chemo these days. Moreover, having 3 or fewer positive nodes would make your Luminal A tumors eligible for OncotypeDX testing if the triple-neg one was DCIS. That would tell you whether chemo would likely even work on those tumors, much less be worth the risk.
I realize that this pandemic is stressful on providers as well as patients, but your MO sounds confused as hell herself.
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hi and thank you all for responding. Happy Saturday 😊.
I have setup three appts - and they are all from diff hospitals-
I decided she will not be part of my team because she couldn’t be more detailed etc and just strongly recommended what she did - she said that she wouldn’t send for oncotype test but for mammaprint test - this test is if I am high risk or not -the whole time all drs have mentioned oncotype but she didn’t mention-
My report stated two node involvement and stated lymphatic invasion present - They are all grade 2 tumors from what I read not because she told me. I have been reading my report more closely to educate myself w terms etc-
When she mentioned chemo DDACT (dose dense) for 16 weeks I said this can come w many side effects such as neuropathy and she stopped for a second and asked me how do I know about that and if I had anyone who has dealt w this - I told her simply I do a lot of research and like to be well informed - I gather she wasn’t ok w me knowing and questioning all- she said because of my age 45 and premenopausal those were her recommendations -
I’m no expert but I’m Learning- I’m not that typical patient that just takes whatever - so for me or anyone to make this decision is not to be taken lightly -
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mari, I would agree with the others, sounds a tad disinterested in her work! Strange
Well hauled into nyc for liver biopsy at sloan. Long day, left home at 10 and not back till home till 5 ish. Dif from the liver biopsy I had 5 years ago at dif hospital, this was way up by my breast and I sort of remember it as much lower before. But they wanted me to stay on my back for 2 hours and the old one they required 6 hours. That is the worst part. No pain today or even last night but now glad to start treatment next wed.
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Mari, yay for you for getting informed and glad you are looking for a team that will support that! Once you have a plan in place that you are comfortable with, you will feel that spirit return....
Iris, glad that you didn't have pain!
Octogirl
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Mari, while I had an A+ team I learned so much more researching threads at each step of the way and asking questions. A good medical team + a wealth personal experiences and education is always the best. You need both.
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Hi! Not sure if this is the right place, but "crazy town" does feel right. My partner is a 2-time breast cancer survivor (2007 DCIS lumpectomy and 2017 stage 2B double mastectomy and multiple lymph nodes removal). Last week a CT scan showed masses in her lungs and we are scared stiff. We have no official diagnosis yet, but this doesn't look good. We have an oncology appt today to determine next steps/tests. What I'd like to ask of this group is any advice on anxiety medication? I'm pretty sure she has PTSD from prior treatments and I fear the toxic stress in her right now can only be doing more harm to whatever else is going on. She was prescribed a Xanax to take before the CT scan but it did practically nothing for her. She is not sleeping and barely eating. She has had a mortal fear of any scans that are in a tube and I am looking for any and all suggestions as she is likely facing doctors wanting PET scans or worse directly ahead. I know from our past experiences that this early time before a treatment plan is established is the worst, but I am seriously worried about her stress level right now. Please help!
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cjmm - Yes, glad you came to this topic. Is any type of meditation possible? I also listen on YouTube to Spirit Tribe Awakening, which plays music at frequencies known for positive/healing energy along with lovely visuals of nature, etc. They have a number of different options available, all of which I find bring relief.
Hopefully others will chime in with some helpful hints. Wishing you and your partner gentle, calming, healing thoughts.
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cjmm...sorry you are going through this again ...I can't help with advice on medications etc , but hopefully someone comes along soon who can help .Hugs
Molly ...thinking of you ...How are you ????
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Hi cjmm2020 - I'm so sorry for what your partner is going through! I had Ativan prescribed for me and actually take it from time to time when I need it (it works for about 8 hours). If she is suffering, a psychiatrist who specializes in anxiety is important, not only for someone to talk to, but medication management.
Thinking of you both in the days ahead!
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Not sure this will help regarding anxiety, but it sure has helped me over the years when life seems overwhelming. This story is true.
Many years ago, when my mother was dying of melanoma, I had to travel from Chicago to Dallas a few times. NOBODY is more fearful of flying. Crazy town does not describe my anxiety. I am opposed to drugs and thus feel I need to conquer my fears with the right thinking. So when I flew, always wanted seat with much leg room. I am extremely claustrophobic. So the moment the door is shut, I cannot breath. This particular flight I was sitting between an off duty pilot, and flight attendant. I immediately told them I was coming out of my skin. They both wanted to help. The woman flight attendant, a lovely young woman decided to share with me her greatest fear. Meanwhile the pilot was leaning in to hear. This is where it gets crazy.
This lovely woman explained she is afraid to get in water for fear of being eaten by shark. So she explained her history which started with a shark at the ocean. Over the years she was sure a shark would show up in a swimming pool, and eventually feared her own bathtub. At this point, I am stunned. The pilot is stunned as well. The woman knows her fear is crazy, but it is still a huge problem. She told me my fear of flying was justified. Lots of things can and do go wrong. The pilot agreed.
What both did not realize was that I no longer felt any fear. I felt fine. I had let go of my control of fear. It did not own me anymore. I actually enjoyed the flight. I was relaxed.
When I was told I had BC again, and would need more surgery, I thought of that day. I could be crazytown, or I could just relax and take it one step at a time. I was in control of my feelings. I never had any anxiety when going into surgery. I slept fine the night before. My surgery was goofed up time wise, but I stayed steady and just found my environment interesting. When I eventually came out, I was starving and ready to go home and fix me. My faith was strong. After all, I did not fear a shark in my tub. I was ok. I just giggle when I think of that day on the plane. Her crazy story helped me so much. BTW, she held my hand the entire time. So sweet, yet crazy.0 -
1Red, that is a beautiful story. I also took everything about BC one step at a time, one day at a time. They remarked at my lack of anxiety. Part of it came from my faith in God, part of it in my experience with recovery programs.
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1redgirl - I loved your story. Thanks for sharing it. I will always think of this now everytime I take a bath. lol
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cjmm, Ativan worked for me and so did Lexapro, I feel if I hadn't had these meds I would not have made it thru the first part of my bc diagnosis.
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1redgirl...I love your story ! I have a fear of flying too ..( even though I'll do it if there's a holiday and the end of it ...and a glass of wine to have on the way ! )..so next fight I'll think of your story :-
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cjmm (and partner): my sympathies as well. I can well understand getting PTSD--I did from a much milder/more treatable single cancer diagnosis. Definitely reach out for help with solutions for long-term issues, whether through personal medical intervention (therapist/psychologist/psychiatrist), short- and/or long-term medications or a combination of whatever works for you.
And please come back and keep us posted on how you (plural) are doing.
Someday I should swing around and revive the CrazyTown Inn.....
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Hey, cjmm...how are things going?
Hope things are ok for all of the Crazy Town visitors in this crazy time...I did have my regular follow up appointment with my MO: she did it remotely via zoom, which was great, if minimal (but I will admit I like it that way)...scheduled me for my next mammogram end of July and for an in person appointment in November, at which time she can do blood draws etc. It was easy! Wish all appointments could be done that way...
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I took a self-imposed vacation from here last week. Had some things that were bugging me that had to be taken care of, so I focused on that. Now that it’s done, I’m back.
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Welcome back, MOmmy!
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hello everyone !!
hope you are all doing great.
is there a reason why some drs don’t send out for mammaprint testing ?
Out of the four oncologists I have met, only two even mentioned it. The other just don’t bother with it.
However, all four said I would need the dose dense act therapy, followed by radiation but not said 100% and hormone therapy of tamoxifen followed by a monthly shot of Lupron - unless I remove my ovaries - so there’s a lot going on - and I’m stage 2 w two lymph node involvement -
Enjoy your day 😊0 -
Thanks Beaver
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Maribellaz, most MOs around here send out first not for Mammaprint but rather OncotypeDX. And they do the latter only for early stage (IA,IB, IIA, & IIB), grade 1 or 2, and 0-3 positive nodes). If all of those conditions are not met, then it is presumed that chemo will be necessary so there is no reason to do the genomic assay. In 2019 the last phase of the TAILORx study reclassified OncotypeDX scores of anything up to 24 (16 for women under age 50) as low-risk. Used to be 0-17 was low, 18-24 intermediate, and 25+ high recurrence risk. Low meant no chemo, high meant chemo is indicated because the tumor had been aggressive enough to be vulnerable to the chemo drugs; but intermediate left the decision up to the patient & doctor. To resolve any doubts, that's when either Mammaprint or Prosigna testing was ordered: both those tests have only either high or low-risk categories, with no intermediate. Now that OncotypeDX scores up to 24 are considered low and 25+ high risk, the decision is clearer-cut, and the justification for Mammaprint or Prosigna is pretty much moot.
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thanks chisandy for writing back -
It’s grade 2 and only two lymph nodes came back positive - stage 2A as per what one of the MOs wrote out.
I just feel many drs work differently and I would like to have this mammaprint testing done. I guess for peace of mind0 -
Hi CrazyTowners! I just popped in to see what condition my condition was in...haha...
Just completed guardianship for my brother...he has developed heart failure due to afib and severe apnea, 108 events an hour on average. With schizophrenia and mosaic down's and a kind of autism called Pervasive Developmental Disorder, he couldn't for the life of him remember all the medicines, get to all the appointments, or stop eating whole Papa John's large pizzas with sausage...much less exercise. Then his caregiver quit because he wouldn't listen to her about social distancing.I am so delighted to see some of the old names still on here. I really admire you ladies so much. I've been in a battle for my mind since I hit 50 and the change of life hit me like a freight train, and then six months later the breast cancer slammed in and my menopause-fueled anxiety, fear, worry and overwhelm just seemed impossible to deal with...these boards and specifically this group helped me get perspective and have some humor about it. God bless Slow Deep Breaths for starting it, her legacy lives on. So glad I had the chance to "know" her although virtually.
P.S. I've decided to go ahead and have the hysterectomy I mentioned last time I was here over a year ago, even though the pain isn't constant when it flares it is really debilitating and then some of the old me that worries comes back. Ok, that's my update. Going to try to poke in here once a week, set a reminder on my calendar so I don't forget! Carry on!
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hey eggroll, yeah many folks still hanging her. Not sure these days if I am ever out of the crazies! Gee, I got a phone call from Fidelity this morn, they manage my enormously not big retirement funds! No why they called but think they were bored! Told them the last report they sent to me, I did not understand! Typical but she had no answer for me!
Oh well, current side effects of new med are fine, but itching like crazy, crazy time!
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Hi Eggroll!
I remember you.....one of just a few on the board that live in our wonderful state....and we are both near the salt water......ahhhhhh
Di
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eggroll...Good to see you back ! Gosh you have got a lot going on with your brother etc ..he is so lucky to have you . Regarding the hysterectomy I had mine , plus BSO about 3 years ago .I was very nervous about it but it really was an easy recovery..nothing compared to breast surgery.i
iris..sorry about the itch .Can they give you anything to help stop it ?
Mari ..when do you start treatment ?
Octo ..my next breast appointment is August ..I'm not sure if he will still be doing zoom appointments by then ...but I'm hoping so..it's been so go just being able to get prescription refils etc from our general doctor without having to front up !
Take care all xx
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Di, I have family in the Seattle area.
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