New and VERY SCARED!!!
I'm just starting out on this not so wanted journey. Dx on July 1st with a hand written path faxed coversheet to my OB stating; ILC in right breast of 6cm + ( US tech put in the biospy report that she felt the tumor was much bigger- around 10cm, but that sonically could not confirm due to screen limits). Two axillary nodes were also biopsied and confirmed positive. I have an appt with two surgeons on Thur to discuss my immediate wish for a dbl mast and lymph removal. What I am going crazy with is the secondary symptoms of possible ovarian cancer. I have the twinging/achiness in my pelvis along with low back pain. I have a pelvis scan on Tues to see if my fears are true. Anyone else have these symptoms only to be found neg? I am so hoping it's just my mind playing with me. Of course these symptoms showed up after I researched that ILC can spread to the ovaries. Thank you ladies for your input.
Comments
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Hi mlv: Sounds like you might have second-year med student disease! (Reading about it causes symptoms to occur!) Just concentrate on your issues ABOVE the waist and we're keeping fingers crossed about a negative scan on Tuesday.
Stay with us -- we'll do our best to help you through it!
Hugs, Linda
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mlv....sorry that you have to godown this journey, but glad that you found us...the women here have a great wealth of information.
could your pelvis and back pain be stress/anxiety related?
BC is a hard road, but doable....I'm 4 years out since finishing chemo.
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Hi mlv,
I too am sorry you have to take this journey. We are all here for you with a wealth of information and support. You will find alot of comfort here just by reading what everyone has posted when you feel down. Come to us when ever you need help and we will be here for you. I agree with Linda. Take it one step at a time.
Pam
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Hi mlv,
I'm sorry to hear that you are facing bc-you will find lots of support and information here-glad you have found this site. Know that so many women have made the journey and come out the other side of this diagnosis. Hope this makes you feel better-I had pelvic pressure and pain at the time I was diagnosed and going through chemo-I was supposed to have had an ultrasound to check the pain out a long time before that, but I blew it off. Then I got the cancer diagnosis and thought, "oh my god it's in my ovaries, too." My onc wasn't too concerned, and I ended up having a pelvic ultrasound because of wacky periods from being on Tamoxifen, and it showed just a couple functional cysts and nothing else.
I'm wishing you all the best as you get more information and a treatment plan together.
"another ILC gal"-Catherine
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Welcome mlv - you will find the wonderful women on this forum the most supportive women in the world. They have kept me sane throughout this whole ordeal.
I do hope your scans are ok. You can get through this we're all here to help.
Sue
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Thank you ladies for all the support. I unfortunatley am not new to seeking help online for a personal crisis. I gave birth to twins in 2008 at 17 weeks. I thought that was a devestation I could barely get through. The help of online friends and knowing I was not alone helped me through. This dx is so much harder. With the twins my husband and I were both grieving with our loss. This dx has made me feel very lonely as now it's me who could lose everything. My son turned 1 just one day before my dx. I also have a 4 yr old daughter. I swing between I WILL FIGHT THIS to OMG they will grow up without their mommy. Everyone is so right... the waiting game is probably the hardest. Every twing, every symptom I read leads me to a dark place. I am trying to just come here and read instead of "researching" my every pang. Again, Thank you for the initial support and I look forward to the day I can return the <hugs> to someone else.
Michelle
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<<<<<<<HUGS>>>>>>>>> Michelle. Feel free to reach out to any of us any time via private message.
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Michelle
you will be fine.... bear in mind that lobular cancer is usually slow growing--- and are often er/pr+ which is a good thing.... lots of options for treatments.... I think it is normal that every ache and pain seems larger than it really is, but the likelihood is just that your body is under stress.... this is a very difficult thing. BUT, this is the worst part-once you have more information you can make good decisions and you will feel much much better.... I am so sorry about your earlier loss.... please keep in touch with us.
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Michelle -- remember that the measurement numbers on ILC are usually bigger than for IDC because ILC is long skinny strands rather than dense lumps.
Good luck during your waiting-for-results period which as noted is the scariest part.
Lauri
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Had the ultrasound today. They did both US on the tummy and intervaginal. The tech was pretty closed lip but did say at the end that she did not see anything that "jumped" out at her. I will take that as good news. We'll know what the results are "offically" tomorrow. She also shared her success story of her coworker who was diagnosed with a 12cm ILC and node infiltration. She has been clean for almost 10 years. I took both of these bits of info as positive messages.
Now onto the surgeon appts on Thursday.
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Michelle - thanks for checking in with us! I bet that area below your waist is feeling better already!
(((Hugs))), Linda
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mlv: Best wishes for Thursday!!!!
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Thanks for sharing that story of the tech's coworker! Another inspiring, hopeful story.
I just sent you a PM, Michelle, in response to your message.
Hope you have a good weekend!!
Catherine
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Hi Michelle,
We are neighbors - I'm in Sacramento. What you are experiencing now - we have all been there. I had a cough when I was first diagnosed, so of course, I thought it had spread to my lungs. Turns out I was fine, and you'll be fine too.
I had a day when I hated everybody I saw - I took my son out to lunch a day or two after my diagnosis. He was 12 at the time and all those people I saw, happy, getting to watch their children grow up - I was so mad at them!
But, here I am still. He's 13 and I expect to be here many, many more years. Once you get your treatment plan started, you will feel much, much better. The early days are full of fear and unknowns but you will get past this and be fine.
Try not to make decisions emotionally. Women tend to do that anyway, and this is an especially emotional time. But, you need to research your disease and study the facts and treatment options so you can make the best decisions for yourself.
Good luck neighbor.
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mlv: Every time my ILC was imaged it was a dramatically different size. When it finally came out then they could tell me what I had. I had a full body scan an MRI and a couple of biopsies before surgery. If it didn't look good the techs wouldn't look me in the eye. I too have cramps which are huge ovarian cysts. I think I shook from head to toe for the first 2 months after diagnosis. Now that I have had surgery and am into chemo I have more and more moments of truly believing I will beat this and live a long healthy life. You will too!
The only other advice I have is get some relaxtion/meditation stuff on your ipod. I am a big worrier and have trouble sitting still to meditate but over all it helps.
By the way I have family visiting from El Dorado Hills right now.
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Thank you again for everyone's positive comments and support. It is so helpful. Boy has alot happened in a short amount of time. As I posted above, I had the US on the Ovaries. Official report came back with a negative for cancer in the region - YEAH. The mind can be a terrible trick player. Went yesterday and "interviewed" two surgeons. Both came highly recommended. The one in the AM was very personable, clicked well with both my husband and myself, ordered up all my lab work and could do surgery as quickly as Thur (7/15). She was not a fan of CT/PET scans before surgery as she felt they directed focus away from the main issues - BC. We felt good we had a plan in place leaving her office. Then we met with the second surgeon closer to our home ( Roseville for CoolBreeze's reference : ) He was very confident but easy going about his approach during our meeting. He immediatly had me on the table with an US probe stuck up my armpit. It became very clear he wanted to know exactly what he was dealing with. He ordered the CT/PET scan and explained that yes we could go after the BC, do the mast and recoup for 3 weeks ( barring any complications) but what if the cancer was in a vital organ ( lungs, liver, brain), do I really want to waste 3 more weeks with "cosmetics" or did I want to go after the life threatening issue immediately with chemo. Well, let me think about that for a nonsecond. He then called his surgical scheduler who informed us he has a surgical opening for Monday or not unitl the week of the 19th. So, long story short... we are losing the ta ta's on Monday with a Level 1, 2 and 3 lymph removal. My husband looked over at me in the office as they were getting us scheduled, clearing it with our insur and going over pre-op inst and said, "I feel like we just bought a used car we were only planning on test driving." I replied "did we buy tickets on the bullet train?"
Needless to say God answers prayers. I was orginally scheduled with the Roseville doc on July 13 but God knew I wanted more than one choice so he made it happen to see both on the same day. God also knew I wanted this out of me ASAP and behold I get a mere 60 hours left with them. Boy do things rock and roll when he's at the helm : )
Thank you again for everyone's advice, support, kind words and prayers. They mean so much.
Michelle
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Hello mlv, Wishing you a speedy recovery!
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dear new and very scared. I too was recently diagnosed June 10th and have had heaps of scans and surgery (lumpectomy) since then. The first few weeks after diagnosis are the worst and I felt on an emotional rollercoaster. It has helped me to find out as much info as possible and this site really helps. Try to remain objective about any info you get and when you have all the reports back you can make informed decisions. I found that it's really helpful to feel that you have some control over your situation since the whole diagnosis thing is very disempowering. Take a deep breath, you are not alone.
all the best, susieQ610
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Hi Ladies,
We are scheduled to meet with the Onc this coming Thurs. I am so anxious to get the cocktails started. I want to start feeling like we are cleaning out all the nooks and crannies these cancer cells are hiding in. The pathology report came back with 25/26 positive lymph nodes in all three levels. I know in my heart I have micromets elsewhere and just can't wait to get at them. I've spent a fair amount of time reading posts from the ladies 5+ years out trying to gain strength from their stories. I still feel like I am on an out of control bullet train since everything seems to be happening so quickly, but I also know me well enough. Time is not my friend. Too much time and I start to imagine symptoms. Now that the bilateral mast and nodes are gone, I can focus on getting those rouge cells. My neighbor is buying me a dog bed to put in the bathroom in anticipation of those times I don't have the energy to drag myself back to bed. My support network is incredible - how does one even begin to repay their love, kindness and support? Thank you to each of you as well for reaching out. Although I would not wish this on anyone, it is nice to know I am not alone in these feelings and this struggle.
Hugs to each of you,
Michelle
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