Why was I stronger DURING treatment than I am now?
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I wont have the surgery at U of Chicago if I can help it as they misdiagnosed my breast cancer, The pathologist actually broke down and cried during the meeting. My son's best friend is a pathologist and knows them all. I have a friend who had part of her lung removed and only found out later that she did NOT have cancer, at another hospital. Pathology is so uncertain! I'm definitely sending my slides to Sloan and/or md Anderson. Wouldn't it be nice if it was all a mistake? I have an app at md Anderson for Jan 29 which seems a world away. They spend 3 days evaluating and then come up with a treatment plan. If I can get into Sloan before then I'll go. There is a big conference coming up, wouldn't you know it? But from what I gather from the path report this is a rare and aggressive cancer so I'd better go somewhere big, where they see these kinds of things.
Thanks so much for the support, you mean the world to me.. Be well everyone!
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Timbuktu, sounds like this nasty beast is causing havoc, again. Sending lots of positive thoughts & energy your way.
To all, thought I'd jump in & join this group as my " suffer in silence" mantra has totally crashed. Last 2 appts. with RO, I have come unglued, literally, crying, soo embarrassing. Went to PCP yesterday and got some meds...Why did it take 6 months to get any type of meds sleep & anxiety? I guess it's my fault for not being the squeaky wheel.
Looking forward to reading back on your group & chiming in..
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Timbuk, i am so glad you are getting a second opinion. just because there are abnormal cells, does not mean it is cancer. the girl that lives nextdoor to me, has been having cervical abnormal cells for 2 years, and they do a biopsy every other month on her. she is only 23, and some docs have advised complete hysterectomy, its a long story, but she has chosen to just keep doing painful biopsys, sevral times a year, until it is definately cancer. abnormal cells do not cancer make. i so hope for you it isnt, but am glad you are getting second opinion. *(((HUG)))* ....
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....holeinone! good for you for squeaking! i began squeaking from day one! so much so that my boyfriend, for one of my birthdays, gave me a leather beautiful doctor bag! its better than a big old purse, and it is where i keep all my meds, including things like clonopin, which i only take when i have to go see them! they do make me nervous. and, if i have to go thru this again, i am putting my foot down. some of my massive depression from last time had to do with how treatment and docs were taking all my time, and, all energy was sapped and could not muster the will or desire to make any art, or anything creative.
so i will squeak loud and long if it happens again. good for you for getting around to it.
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Timbuktu: I have this mental image of all of us hand in hand in a circle, you in the middle, just recieving love and comfort. It is a nice image. Please keep us updated; we care so very much.
Holeinone: Welcome. Glad you found this thread and I must chime (squeak) in and tell you that one of the biggest things I am challenged with is squeaking my wheel and not suffering in silence. It helps so much that others know this is not a cake walk after treatment. I still hesitate before mentioning anything other than positive ~ I'm not talking about these ladies, but the folks walking around in my daily life who think I should simply be estatic to be alive. I could be projecting but I don't care. So there.
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Purl, your image brought tears to my eyes...
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If you are projecting Purl then so am I......lovely image.....
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Timbuktu... I'm hand in hand with everyone here in Purl's circle surrounding you! Love, Prayers and hugs to you!
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Timbuktu
I have been out of touch with the site for several weeks. I am so very sad to hear you are dealing with this.
I am sending you love, light and a hope that all is okay. Please keep us posted. You are surrounded by love. You are in my prayers.
Julieho
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Gosh, this is the dearest group of people on earth! Maybe it's true what they say about suffering, it brings out humanity.
I'm sitting here at the computer doing research and getting more and more frantic. It sounds as though I have a very fast growing cancer that is usually detected after it has already spread. It's so frustrating, the waiting!
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maybe they caught yours early though, how long do you have to wait? Thinking of you.......x
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Well, I started bleeding on Nov 11. Then it stopped a month later so I thought I was ok.
The gyne who did the d & C said it was tiny so she was "hopeful".
Oh boy, that did not sound great.
On Tuesday I see someone but at a hospital I don't want for surgery and then Jan 28 I have an app with a Sloan dr in New York.
But that's the first meeting. and it's 10 days away. I want this out ASAP! Well, we've all been there... But my bc was supposedly not
so aggressive.
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Timbuktu - You have been on my mind so much and I just wanted to check in and send you love and let you know you have been on my mind.
I am glad you have a second opinion team but I know how frustrating it is to have to wait that long. Hopefully on Tuesday you will have more information from the surgical team you don't want to use that will at least provide you a more thorough understanding of whats going on. I know for me the unknown makes it all that much more difficult.
Love and prayers going your way.
Julieho
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Thanks Julie. So well said! I think I'm going to go with the dr I see on Tuesday. With a fast growing cancer I can't afford the wait.
Hopefully, they will catch it early but either way I can go to the other places once this is out of me. Every day is intolerable.
I can't believe I'm going through all of this again. It's been 2 1/2 years since the bc was diagnosed. I'm finally feeling better, after the chemo. Here we go again! But life...no one said it would be easy!
I just came back from seeing August: Osage County. I wanted to get my mind off of everything. Who knew that two of the characters would have cancer? But oddly, it made me feel better. The cancer was almost an aside to their miserable lives. lol Life went on in it's own horrible way and the cancer...just one more misery of many. As I write this I can't see why it made me feel better but somehow it did!
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Timbuktu,
Glad you got out and did something fun for yourself. I plan on seeing that movie, great cast. Hoping all the best for you on Tuesday...
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Middle of the night panic. I don't know what to do. When I went to U of Chicago they misread the mri and the pathologist missed the micromet. How can I go back there? If they don't see lymph invasion or micromets when they are there they don't take out nodes.
But where to go? I think they will be the quickest. Panic, sheer panic.
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Tim...I just saw this post and am sorry you had a difficult night. We all know how those are and it's terrible. I hope you were able to get some sleep and I hope things looked a little better in the morning. When you are facing this type of uncertainty, the nighttime is the worst.
My advice is to go to U of C on Tuesday and see what they say. As you noted, it's soon and you want some answers quickly. I would also suggest that you explain to them your concerns about what happened in the past. They may be able to give you some comfort about their plan going forward. And if you don't like what you hear, you have many other options.
We are here for you in Purl's circle (beautiful Purl, just beautiful).
Rabbit
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Words are insufficient, truly. One heart touches the other here. No one else really gets it and may they never have to. Thank you.
I wound up taking a Xanax and enjoying a blessed night of sleep.
When I woke up I was focused and raring to go. I called Sloan and begged to see the dr sooner. The nurse was wonderful.
She called me back and told me I have an app for 12:30 tomorrow! Lesson one, never accept no for an answer!
Lesson two, there are such good people in this world!
They promised me that I would have surgery quickly. I will need tests of course but I'd need them here as well.
I hope I'm doing the right thing. I trust their team and the dr was recommended by the head of clinical oncology at the breast center, who treated me 2 1/2 years ago. I feel I'll be in good hands. And besides, I get another trip to New York!
I'll keep you guys up to date I'm sure...those middle of the night anxieties are horrid But if there's one thing I've learned it's that we should listen to ourselves, to our anxieties. They are what can get us moving!
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Timbuktu,
Yes !
I think you are doing the right thing. You are moving forward...keep us posted...0 -
Excellent news, Tim! Hopefully you will get answers soon. Please keep us posted!
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Tim,
i am thinking about you in this difficult time.
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i am thinking of you too, timbuktu.
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Gosh you are all great! Cheerleaders!
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Fantastic, Tim!
You'll be in my thoughts and prayers tomorrow!
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way to go Tim. We are our own best advocates.
Please let us know how everything goes and if you possibly can enjoy NYC a little. I grew up in Manhattan. Born and raised and was there until I left at 24 for a farmhouse in rural Vermont.
Take us with you in your heart. We are all here for you.
Much love,
Julieho
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Julie, I grew up in Brooklyn and you touched a nerve. Part of me is thrilled to be going home! lol Crazy, huh?
It reminds me of that Woody Allen movie where he is petrified that he has a brain tumor. He's walking down Madison Avenue and says to himself "Nothing can happen to me here on Madison Ave".
I just feel safer in New York, it' s home, still.
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Hope all goes well today, and enjoy being home even for a short while, home is the most healing place
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Tim, I am so happy to see how proactive and assertive you are. I've never placed doctors on a pedestal since I worked with so many. Still, when I got my BC diagnosis I was so scared I ignored my onc's personality ( his medical advise was sound.) as soon as I finished my treatment I switched oncs. Nothing near to your courage! I once had a friend who was trying to help me be more assertive. She said something that sounds harsh but was really helpful to me in standing up for myself-- she said: you wouldn't be so concerned about what other people think of you when you realize how seldom they do (think...)
It makes me laugh when I think of this but not so much when I'm in a crisis like yours. I'm in the holding hands circle and you will be in my "good wishes" state of mind as you go through this journey.
Hugs,
Peggy
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Hi everyone,
Tim - I think you are in NY today and I pray you are getting answers, a plan and feeling supported by the team there. I hate to throw out what is likely a trivial issue but you ladies have been my life-line and I posted this on a discussion board just now that deals with thyroid nodules post breast cancer but you are my "team" so wanted to get your experience, strength and hope.
On an MRI they did last month to look for explanations as to why I am having such severe joint pain, mild neuropathy of hands and feet and muscle/ligament tightness and soreness they found a nodule on my thyroid. They recommended an ultra-sound which I had last week. I just got the report which is below.
The radiologist recommendation was to keep an eye on this and repeat ultra sound in 3 -4 months or "alternatively" do a Fine Needle Aspiration.
I see my oncologist tomorrow for a routine follow up anyway and will discuss this with her . I am feeling like I want to push for the FNA.
As you all know, I have a genetic mutation (not BRCA) but a rare one that predisposes me to cancer, a ridiculously high rate of familial cancers and my mother had 5 separate, new cancers over the course of 15 years).
Furthermore, because I was in a high risk group I was getting annual mammograms and MRI's on my breast. On the routine MRI done on my breast prior to my cancer diagnoses they found something that they called me back in for. They ultrasounded it and said they didn't think it was cancer so didn't biopsy it.
Six months later, in the exact same spot after my routine mammogram the same "cyst" had tripled in size from what they had found on the MRI 7 months earlier. This time they did an ultrasound and immediately recommended a biopsy, which as you all know showed it was an agressive cancer and HER2 positive. Now a double mastectomy, heavy duty chemo and herceptin for a year later I am a bit afraid to just "wait and see" on things found via ultrasound. I have researched this some on the internet and taken note that thryoid cancers grow slowly which is why they often take a "wait and see" approach to findings. I am a bit frightened of the FNA procedure but just think I should insist on that. I would love if any of you would share your thoughts, experience and as always your amazing strength and hope.
(Report is below)
Thanks - Julieho
capsular is an indeterminate heterogeneous well-circumscribed nodule in the mid lobe of the left thyroid which measures 2.0 x 0.9 x 1.4 cm and has a cystic component. This nodule can be seen on the CT from August 20, 2012 and although not able to be definitively measured on that study, appears similar in size, therefore favoring a benign etiology.. A benign-appearing ovoid nodule in the lower pole of the left thyroid is well-circumscribed and has a spongelike echotexture. Impression: 1. Indeterminate left midpole thyroid nodule. Recommend followup ultrasound in 4-6 months, or alternatively an FNA may be obtained. 2. Benign-appearing left inferior pole thyroid nodule. 0 -
Jenny, thinking of you today, hoping for the best..
Julieho, I have no knowledge of thyroid issues, nodules. My advice would be listen to your MO , but go with your gut. If your instinct tells you to have the biopsy, I would definitely go for it. I feel like we have all been through so much trauma, that the lets wait & watch mantra does not work for me.
I have an inflamed axillary node that lite up on the Pet Scan. My BS took 7 nodes, that one got left behind. It's still there, large and inflamed. My RO is "pretty sure" it's nothing. I broke down in tears last week, telling him I needed to know for sure, & if its cancer, lets take care of it. He is going to scan it again after I am done with rads, if there is any doubt I want a biopsy.
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