Joining the Stage IIIC club With a Fearful Heart
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where do I find the chemo thread? I start my first chemo on 6/30. Nervous, anxious and any other emotion you can add on! My doc give me anexity meds at our first visit. Helping a little but I'm still a wreck. Glad to see this thread.
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Denise, thanks for the nodes story...I think I'll quite like to picture my valiant nodes rushing in one after the other to fight the onslaught of cancer!
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JenPam - you are welcome! I know that imagery is very powerful!!! Thanks!
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I just wanted to thank all of you for your encouragement and support. I have scans this week to check for spreading. I am definitely still very scared. I had an encouraging appointment with my oncologist who said chances of spread are 10 to 15% so I'm really hoping those low numbers work in my favor. We're moving forward as though it hasn't with chemo set to start July 1st but of course that could change based on results of scans.
I so appreciate all of you that have rallied around me. As many of you have said this is the worst part and every time I see one of you post it helps sustain me. Thank you so much. You are all an amazing group of women.
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I got my pathology results back yesterday and am now am freaked out more.
35mm grade 2 IDC with prominent micropapillary component present.
Extensive Peritumoral lymphovascular invasion seen admixed intermediate grade DCIS present
ER8 PR6 HER2+
Resection margins 6mm from inferior >10mm all other margins
Extensive axillary disease present 18/22 nodes with extensive extra nodal spread evident.
All gross macroscopic disease was excised from axils at the of surgery.
Now on to chemo and herceptin in July- plus radiotherapy and hormonal therapy.
Doesn't look good for this 52 year old body who had a clear mammography 21 August last year. My CT scan in May said no distant spread but everything about this cancer is aggressive+++
My surgeon says we are approaching this with a cure in mind so we just live in hope. But seeing things written in black and white has been difficult.
Anyone have any words of wisdom.
Thanks
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Lindzanne, don't forget the men here, well one man!
HelenWNZ, I had an aggressive cancer and, like you, had surgery first with all nodes removed. After chemo (where I failed to achieve pathogenic complete response) and 25 doses of radiation, I am now 18 months on Tamoxifen and there is no evidence of the disease as of two weeks ago. I'd say this is exactly what your surgeon if aiming for for you.
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Traveltext, you are such an inspiration to all of us, women AND men. Thanks for posting. You rock.
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thanks traveltext my surgeon keeps saying we are in this for the cure but I can't see the wood for the trees at the moment.
Did you have regular blood tests or something that kept telling you you still have cancer - it must be a great feeling to be ned al last.
Well done after all your hard work.
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I don't have blood tests or scans, just see my oncologist or surgeon for a physical checkup every six months. Basically, in the absence of symptoms you are, by default, NED. We all live with the prospect of recurrence, and this happens to about 30 per cent of us. Best just concentrate on each stage of your treatment and stay positive. When does chemo start
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Sorry about that, Travel text, you are right. An incredible group of women and men!
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HELENWNZ - CURE IN MIND! Those are powerful words. When my surgeon delivered all of the bad news, she looked me in the eye and said "We Can Cure You." I didn't believe her for one minute, but I had those words in big letters put on my dining room wall that I can see from every room in my house. That was almost 5 years ago, and I'm still here. In my darkest days, I would just sit in front of those words and say them over and over again.
So remember those words of your surgeon, write them down or get them made and put them in a place you can see and believe it!! Those surgeons do not speak those kind of words lightly!
Sending HOPE!
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Denise, I know exactly what you mean. After my first surgery I found out I had to have a second one. I freaked out. I immediately emailed my MO and he reassured me and ended the email with " I promised I'd take care of you, you are going to be alright". I read that sentence again and again and again. I held on to it and still do. I'm coming up on my two year anniversary from my diagnoses and so far so good.
The beginning, before you have all the test results and when you are staring down a year of treatment is the scariest time. You just have to take one step at a time. Lean on those who are there to help you. Let yourself feel everything but don't let it take over you.
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HelenWNZ - I can see that the number of positive nodes you have is scary for you. BUT - not everything about your path is horrendous. It's Grade 2 not Grade 3. OK. It's 3cm - that's what my onc would call 'moderate' in size. OK. It's ER8 - that's good, It's PR 6 - also good, the strongly ER /PR cancers are often less fierce and are more responsive to hormone treatment.. In this respect we are similar - and though I was also Her2+ like you, my onc says that with these numbers this looks more like hormone driven cancer and less like a super aggressive Her2 driven cancer. However, you will get Herceptin - which is also a good thing in my view - research suggests that even Her2 neg cancers may benefit from Herceptin. Hold tight. - there are things in your favour. Lindzanne - you too X
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..... A PS to that: my dear friend with widespread aggressive Hormone positive cancer was stage 4 from diagnosis, with spinal mets. This week her PET scan showed no active disease 2 years on - tamoxifen alone has got it wholly under control. The type of cancer you have IS treatable - even from a worse starting point than you are at. The single thing that helped me get my head in order was realising that, even though I'm now 111C, people like my friend would give anything for the chance I have of cure - however slim.
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Thank you everyone things do seem very bleak when you see it in black and white. My other half keeps saying to me that we are looking to cure this but I guess I am a bit side tracked by my feelings of doom and gloom.
I got a letter from the oncology department to say I would be seen for chemo in about 4 weeks from my referral so am looking at mid July I guess.
Too much time on my hands is the problem. I am in a funny situation with my work who have been amazing and have given me 6 months leave all paid. I have been told that I can go in to save my sanity and I know I will be doing that but don't want to upset the routines they now have in place to cover me.
I need to pull it together for sure - normally I am the one people lean on not the other way around which is also a big turn around for me - yet another thing to get used to.
Thanks for the hope and kind words I better get the place tidy and start the day off on a better note. Its winter here the fire is roaring and the kids have gone to school without any arguments so it is a good start indeed!
Take Care
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Thanks SSinUK my surgeon appeared relieved when I had all these positive things as he said we can now throw everything at it - top shelf all the way.
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Had a bone scan yesterday--got the message it's NEGATIVE for cancer. I was so sure it would be positive--the techs doing the scan were so somber. Now I just have to get through the CT scan, praying that goes well too.
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Helen I think I really understand how you feel right now. I have been barely holding it together myself. I think it's hard when you're the person everyone leans on--we crash when we suddenly find ourselves in need. I wish I could give you some advice but we're both in the thick of it, just know I am thinking about you and it sounds like you are in great hands. The advice on this thread has been really bolstering me and I hope you too.
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Hi Lindzanne - looking at your dx details I really believe we are on the same page and I guess by looking at your photo you are quite young which must be extra tough. I'm 52 so still a young thing myself.
I had a better day yesterday which helps to put me back on track and take my mind off the obvious. And today will be a good one too as I slept straight for 5 hours - first time in months
Have you had surgery or started chemo yet? You will be relieved about the bone scan and fingers crossed for the CT scan. I had one before my surgery which came back clean at that stage but who knows now a month later whether any little cells have settled.
Take care and keep in touch.
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Lindzanne, great news about bone scan! Fingers crossed for the CT. I was convinced mine would be positive because my scans were so bad, but it wasn't.
Helen, as you say, with all those positives, every tool in the box is available for you. It's ironic but chemo is actually more effective on the aggressive fast growing cancers. My MO told me mine had only been there a few months but it managed to sprout 5 tumors (largest 7.5cm) and mets in the lymph nodes, and yet the chemo got it all. Now they're telling me that thanks to Herceptin and Perjeta and my response to chemo my chances of recurrence are in the single digits and I still can't quite believe it.
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Chemo is more effective on the aggressive fast growing cancers, but in my case I didn't achieve pathogenic complete response. In other words the tumor was still active after the treatment.
This becomes less worrisome when you consider the surgery was successful and the rads added further insurance, but it leaves a question about the effectiveness of my chemo. Perhaps I needed an extra dose or two, who knows?
I'd recommend checking your pathology report post surgery so that you know what's what.
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No PCR (pathological complete response) here either. My biology didn't add up on paper. Histologically it should have been slow-growing, but clinically it was burning the house down, so to speak. No worries. The mastectomy had wide, wide clear margins, and rads mopped up whatever nits were hanging about.
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Good stuff sbelizabeth. Speed read your blog and you are a fine writer. What a good record to have. Well, good as in useful. Nobody reflects fondly on their treatment, but it is a badge we here wear with some satisfaction when things go according to plan. And when they don't, we go look for more ways to treat us. How much fun is that!
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Glad to hear the good bone scan news, Lindzanne, and continued fingers crossed for your scan!
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Hi Lindzanne, I'm also recently diagnosed, age 31 with grade 3 and most likely stage 3 also (they don't know how many nodes yet, surgery is after chemo in October).
During first few weeks I had panic attacks daily. No more, but I'm still terrified each night before I go to sleep. To be fully honest, reading these boards helps me half the time - survivor stories especially, as well as tips for dealing with symptoms, and the sense that I am not alone...but the other half the time when I read about people's horror stories with debilitating side effects, serious complications, mets, and death, I end up feeling much worse. I still haven't decided whether to stop reading. My therapist, friends, and family think it's doing more harm than good. I really don't know. I don't know how old you are, but contemplating dying of cancer in one's 30s is unimaginable and nothing, I have found, truly makes that go away. But I wish you luck with treatment and health and many many years left.
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Elise, I know exactly how you feel. On the one hand, this thread has provided me with so much concern and support I've felt very comforted. On the other hand, it's easy when you still don't have all the answers to go seeking out all the topics that are the worst case scenario.
I am 36 and you are right, it is unimaginable and has me in a pretty much constantly elevated state of anxiety. It's helped me feel validated knowing it's normal to feel that way and I'm not "failing" because I can't just be positive and upbeat all the time. I am grieving many things right now--loss of fertility, my freedom from the kind of fear this disease brings, etc.
I've been trying to limit myself to topics that pertain to me in the moment, and focus on the very genuine emotional and mental support I've received here. It's not easy not going down the rabbit hole.
My medical team discussed chemo before my surgery, and instead we opted for surgery first. The majority of my lymph nodes were micromets. If you are having chemo first, I know I've heard of lots of people who were node negative or had just a few positive afterwards so you miget not know how many were ever involved!
I wish you luck too. I hope both of us can find ways to cope but we're still at the beginning of this so of course it's a struggle. Feel free to pm me if you need any support.
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Just got the results of my CT scan---all clear aside from an ovarian cyst and a small seroma where my armpit incision is. My husband burst into tears when the doctor told us--he is such a rock and he'd been holding all that in for me. Currently in the chair for my first chemo treatment. I'm so relieved about the scan results I'm actually happy to be getting chemo right now, but talk to me in a few days when the side effects kick in!
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Excellent news Lindzanne, what a relief for you both. Don't assume the worst about the chemo, many of us had few side effects, so just take as it comes and consider that you are well on the way to successful treatment.
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