A place to greet and meet newbies to stage III
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thanks, JerseyGirl
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Hi! I am new here( literally just joined today)....
Been full of anxiety, as my doctors have me baffled. I just want to be around to watch my 1 and 3 year old little girls grow.
I have been told my cancer is a "fluke" by my doctor.
Then they throw all of these treatments and statistics at me .
I just feel so lost.
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__asher__ - I literally just started treatment with a similar diagnosis (although mine has spread to lymph nodes according to the sentinel node dissection.) It sucks, but eventually it will become tolerable and you'll get through. Just finding out is the worst part, I promise it will get easier. And as JerseyGirl says, people here are supportive and informative, so certainly ask questions!
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clevelandgirl, we're here for you
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Hello All
I was diagnosed 12/24. I knew from the skin involvement it was going to be bad (umm clear mammo just 9 months earlier) , i have IBC stage III, with lymph node involvement verified by biopsy.Triple Negative on top of it all. I'm on chemo now, 3 down of AC 1 more to go, and 4 of dense dose taxol on my regimen then surgery and radiation. This forum has been a mental health saver. I can't believe I can say I feel better now that I'm in treatment. I've had some rough chemo (6 days in hospital after first infusion)
All on this sight gave me the best early and even later advice, take it a day at a time. I'm an over thinker, so that was hard to do at first, but with so many things going on, scans, tests, speculation etc, on will treatment work etc, this sight has been a life saver.
What I've found personally (can only speak for me) is when you are diagnosed at a later stage initially, especially in my case (was told with such a large tumor and smaller one, skin involvement and suspicious lymph nodes, they thought I may have been a stage IV out of the gate, (PET and bone scans, and CT's have so far showed no spread even had a lumbar puncture to check spinal fluid) my view was grim from the start, and now is somewhat brighter. My MO was always clear and straight with me, that what matters is how my cancer responds to treatment and even she is now, cautiously optimistic. BCO I can't thank enough. Just reading about others that have made it, and are making it, helps me so much. No matter my personal outcome.
Thank you for starting this thread, because you see so many others, that are stage 0, 1, etc, but to be a III out of the gate is your life looking and talking to you in real time. There is a difference. Thanks so much hopefour for starting this thread. You are right, we need it.
Also on another thread I saw when you have stage 3 the kitchen sink is sort of thrown at you. Good. We need it. Need to see if everything and anything works to kill and get us to NED.
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Thanks so much, FighterGirl ❤️.
Hi Cleveland,
Many hugs to you.
The nasty thing in my body was called "wild". 😕
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hi Cleveland girl, and jersey girl too!
I was dxed with stage IIIc bc, 12nodes pos, lymph and vascular invasion, my sentinel AND auxiliary node completely replaced by tumor, AND her 2 pos, ! I could go on and on about my nasty prognosis,
But that was almost eleven years ago. I am well and thankful everyday. I come on these boards to tell my story and also to let you know there are plenty of us out there living way beyond this bc experience.
Keep strong, have faith, surround yourself Only with positive people and come here often for support. You will get through this difficult time!
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Wow, IKC! So inspiring! Thank you!!!
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IKC, thank you!! I am also stage 3c her 2 positive amd had 17 nodes affected. I have a hard time having hope for myself. Thank you for coming back here to provide hope.
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Thank you, IKC!!
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Thank you, lkc!!!!! you are such an inspiration!
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IKC - thank you.
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IKC - You provide such inspiration. Thanks.
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I'm newbie-ish to this site, and especially to reaching out to other women with breast cancer. Not sure why it's taken me so long... I was diagnosed with IDC, HER2+, Stage II just about a year ago. By the time I went through neoadjuvant chemo and a unilateral mastectomy, I was Stage III. I had 3 lymph nodes (16 removed) and clear margins, but my tumor just didn't respond (like not at all: chemo, it laughed, what's that?) to treatment. Anyone else have that experience? Do you have a good explanation why some tumors don't respond? Finished up radiation in January and am on a clinical trial through the end of this year. The old joke about every headache is a brain tumor? Guess that's what I'm coping with right now, a lot of fear and anxiety that it will spread. It's a strange juxtaposition, to be "getting on" with life--feeling decent, making meatloaf, taking kids places--but not really know what's next. Do you get used to that? Best to you all!
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Hi Sunny,
I'm sorry you're going through this. When you went through chemo did you have any targeted therapies like Herceptin? You mentioned you had clear margins, so they were able to get it all out including the nodes? Have they done a PET or CT scan? I know when I was diagnosed it helps immensely to have one done to ensure it had not spread beyond the sentinel nodes and breast.
It's hard to deal with the unknown when it's so unknown. Hopefully you can talk to your oncologist about what you can do to keep track of things so you're not so worried. In the meantime, this is an amazing group of women who have great care and info
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Hello everyone! This is my first post, but I've been reading along since I was diagnosed back in October (which by the way, is by far the absolute worst month to be diagnosed with BC).
I am 37 years old and scans initially found a 5+cm tumor in my right breast. PET scan confirmed that my nodes were positive. I completed 8 rounds of chemo (AC + T) and just had a right mastectomy with ALND last week.
During chemo there was some concern that the main tumor did not appear to be shrinking based on the clinical exams. After round 6, an MRI showed that the nodes were clear and that the tumor showed treatment response but it could not be accurately measured. So I completed chemo.
After my surgery the BS said the nodes appeared clear. But my pathology report came back with 7/15 nodes positive and the main tumor measured 8cm!
I'm really thrown for a loop by this news! Radiation and Hormone Therapy have always been part of the treatment plan so I know they are next. But I also know a poor response to chemo doesn't do my prognosis any favors. I see the BS on Wed to go over the path report in detail.
Any advice or input is appreciated. Thank you!
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Hammie, you might ask your onc about recent research about women who don't have complete pathological response that are given more chemo after surgery--I believe it's capecitabine (Xeloda). And look into Metformin and Zometa to help prevent recurrence.
And hang in there. There are lots of us who were sent reeling with a lousy path report and are doing fine. Gentle hugs.
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Hammie, my diagnosis was very similar to yours as was my treatment plan. After my BMX, I learned that the neoadjuvent chemo didn't shrink my tumor much & I was totally discouraged. But my doctors gave me a different perspective....they said the chemo ate away at my tumor & made it less dense. They didn't expect me to have a complete response due to my high ER factor. The chemo is better targeted towards the cancer cells that are not ER positive or for cancers that are Her2 positive. My doctors went on to say that for cancers such as mine (high ER & PR factors) that Hormone Therapy would be my biggest friend in preventing a recurrence. For that reason, I went on to have my ovaries removed following radiation. The doctors told me that for some types of breast cancers, the only hope is chemo as some women are not impacted at all with hormonal therapy. And those are the cases where they really want to see a complete response to the chemo. I hope this helps. Good luck on Wednesday!
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Thank you for the responses!
sbelizabeth... I read some of the studies about Xeloda and have made a note to ask my MO about it. Thank you!
Angiel... I have heard similar things from my dr's regarding response of ER+ cancer to chemo. They have also said that the hormonal therapy will likely be the most important part of my treatment. From what I'm hearing so far, it sounds like my cancer was less dense as well after chemo, but not necessarily smaller.
One thing that concerns me at the moment is that my cancer had a very high Ki67 score (it was over 70). My MO specifically told me that she expected my cancer to respond well to chemo because of the high Ki. Does anyone have any experience with a high Ki cancer and a poor response to chemo?
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Hammie28 - my Ki67 score was over 60, and I had a good response to neoadjuvant chemo. My MO and surgeon both told me that they don't expect a complete response with ER+ cancers.
The other thing they told me that was very helpful is that imaging always underestimates the size of tumors - that they don't really know the exact size until they can actually see it. Same with nodes. I had at least 10 nodes show up positive on initial MRI at the time of dx, and then after chemo they all looked clear. When pathology came back after surgery, two were still positive, so I wound up with an ALND.
Hang in there. When they told me at least 10 positive nodes I was beyond discouraged. Good luck on Wednesday.
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Hammie28--MY ki-67 was in the 70's--75, I think. Like you I had a huge tumor. I had surgery first then chemo, but I guess it was effective! It has been a while, an uneventful while. Like you I did ACT. Dose Dense. Be of good cheer. Weesa
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Hello,
I tried coming to this forum a few months ago when I was still stage 1 and found it not as anonymous as I would have liked. I made a new profile and am back. Double mast March 16th. I'm typing with chopsticks because it hurts to reach the keyboard. Hurts to laugh too. I was laughing at this today on FB:
My Jackson-Pratts (I got 4) are far more painful than the double mast surgical areas. Those darn drains are the whole reason I sleep sitting up. I tuck them up into the top of my Softee mastectomy shirt and they look like really lumpy bosoms. But it makes it so I can go out in public. If I'm lucky they'll be gone on Friday.
Welcome to us all, I'm so sorry you've had to come here but there's loads of goodness to be found.
cb
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cb123
this is hilarious I can't stop laughing
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Hi all
I'm new to this board. I just wanted to say hi.
Happy Tuesday!
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Welcome, El Tigre! Sorry you're here but glad you found us.
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Howdy and welcome, El Tigre. I too am sorry that you find yourself here. But so glad you found us and that we are able to support, encourage and walk with you through your journey.
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thanks! Happy to find this board but i wish none of us had to be here
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I can't remember if I posted here, but hello everyone! Just finished chemo, waiting for the results of the CT scan on a lung nodule, then start rads later this month. Had lots of delays first beginning chemo with drains in for 5 weeks then infection then iron infusions followed by last month by my insurance wrongly dropping me adding another month in chemo delay. Looking forward to all of us posting in the 5 and 10 year out boards!
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Well welcome to you both..El-tigre and Artist928. This was a life line of comfort and strength for me the first three years after DX…I still come for the comfort and offer my encouragement to others now. You have joined a group of woman that live the courage others wonder if they have, show their determination to survive by taking the next step, showing up for the next appointment, who are now blessed with the undeniable gift of empathy so freely offered to all in need….yes welcome to an amazing group of woman who have known deep sorrow, but reach each day for Hope!
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Hello, Artista and El_Tigre, and all the others who have joined recently. I haven't checked in here in a while. I'm sorry you all have reason to be here, but glad you found this forum. I think you'll find lots of support here. For those just starting or in the midst of treatment, hang in there. It does end.
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