Joining the Stage IIIC club With a Fearful Heart
I got my pathology result today after lumpectomy and lymph node removal. 28/28 nodes so here I am. Stage IIIC.
That number of nodes has me terrified. I know there are phases--we can get through this many days, with strength and some measure of positivity. I have been feeling strong and upbeat. Then I got my results.
Today, I feel despair and no hope and convinced there's no way it hasn't spread beyond my lymph nodes.
Is it disrespectful for me to be scared of something that I know so many others have faced bravely?
I am terrified, lonely, and hopeless tonight. I know I have it in me to be strong and that will come back shortly. Just not today.
Comments
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Lindzanne, I am sure you will hear from many in Stage III, just wanted to give you major hugs. It is scary in the beginning, but as time goes by and you get your treatment plan, it will be less scary and more anticipation of the treatment results. I don't think it is disrespectful for you to be scared. True be told, we are ALL scared.
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lindzane my thoughts and prayers are with you. I too was afraid where else the cancer was and my surgeon ordered a pet/CT so we would know what we were dealing with. I would do this again as it helped me to know either way. The unknown is scary and so is being newly diagnosed. We all deal with this differently. It does get easier tho. Big hugs coming your way
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Hi Lindzanne. I received my path results a few days ago and like you have been staged IIIC with 20/20 affected lymph nodes. That was all level 1,2&3 lymph nodes so not a single one in the affected area uncompromised. Have you had the whole body scans done yet to determine if the cancer has spread outside the one area. Mine said it hadn't but I don't see how that is possible with all the lymph nodes affected. I think the cancer cells just haven't settled in long enough elsewhere to be big enough for the machines to see them yet. I'm just going to have to hope the chemo is effective enough to kill all the cancer cells before they settle down. I have been going through the boards and have had difficulty finding anyone this stage with all their nodes affected that haven't gone on to stage iv. While it brings little comfort I too am feeling hopeless and am planning a pity party for myself today and will pick myself up tomorrow as will you
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no scans yet. I'm dreading them
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Sending my hugs and positive thoughts for you Lindzanne.
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So sorry Lindzanne. When are your scans scheduled for? Please come back and keep us updated. These scary times really need to be shared with others who understand. It's not something to keep to yourself and stew over when there are people here ready and willing to listen many of whom have felt the same way.I do take some solace in knowing that even at stage IV it is quite possible to be treated and go on to live a long life with no further problems. Having said that I would prefer to not progress to stage IV.
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Appointment with oncologist on Friday and scans will be ordered by her. There are some threads on the website with folks who had many nodes positive and are still doing well.
It's not what I was expecting but I am trying to be hopeful.
My surgeon said we were expecting lymph node involvement, so he wasn't too surprised, and said yes, it increased my chances of spread or recurrance, but still seemed to think it likely he got it all.
Like you, xxyzed, it doesn't allay my fears especially as I wait for scans.
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I don't know how the surgeon can say that without scans. I suspect he means he got all of your nodes which would mean the level III as well like mine. I prefer them to say nothing than give potentially false hope but perhaps that's just me. I don't know that anyone faces these issues bravely. We all meltdown and then pick ourselves up again. I think we need to give ourselves the space and permission to feel whatever it is we feel both good and bad. Hugs and hoping the best for you for no spread
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Hi Lindzanne, I really feel for you and what you're coping with. Hopefully some Stage III people will add comments and let you know you can do this. If you add your info to My Profile, we can see your details and it's easier to see your hormone status etc. Wishing you many kind thoughts.
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Lindzane, the advice my onc gave me when I got a scary diagnosis was that ER+ HR+ Her2- cancers are very treatable. Good luck with the scan. I dreaded mine too.
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I know exactly how you feel. I had my op on 31 May and got my pathology results on 9 June. When the surgeon told me my tumour was 3.5cm my heart lifted for that split second as I thought it was bigger. Then when he said 18/22 nodes affected my heart dropped.
He keeps saying he was happy he got everything and we are going to throw the big guns at it treatment wise. And the whole team are looking at a cure.
My C T scan showed no evidence of spread so are looking at mopping up.
The waiting is terrifying but each time I get a result and a new plan I find it helps me as it's the waiting that causes me the most stress.
Take care
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Count me in...as scared of this and have to do it... In some ways, I want to just do it and get it done, but, at the same time - I am frightened of the results...
My breast tumor was very large - at 6.5 cm.....
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Scared is an understatement. But we can only push on. I have 3 kids 19 15 and 11 so have to beat this. I struggle with the speed mine has grown from a clear mammogram in August to Stage 3C at diagnosis.
I am full of I wish I had done this or done that and maybe things might be different but hey it is what it is. Can't wait to start chemo but afraid that I might not cope the list goes on.
I was told to focus on what you can do, one step at a time. Eat healthy, exercise and laugh. So I've eaten more vegetables this last month than I have all year - lucky I like veges
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The best bit of advice my oncologist gave me was: "never have preconceived notions about any stage of your treatment".
That's another take on HelenWNZ's: "focus on what you can do, one step at a time", but the idea is to understand that modern-day treatments are targeted and effective and statistics show that you are more likely to come through all this than not.
As for scanxiety, that's pretty universally experienced, I'd say.
Best wishes to all.
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Lindzanne, just wanted to say I'm thinking of you because I've been through this too and the waiting to find out if it's spread is so terrifying. I've had 2 PET/CT scans looking for mets and thankfully they came back negative even though so many lymph nodes lit up that there were too many to count on the scan reports. I'm having treatment the other way round, chemo first, and now just had surgery. I can't offer hope for the long term because I'm still going through it and I'm always scared that it's going to come back, but I can say that in the short term the chemo is effective because at my surgery they found chemo had wiped everything out. And it will get any cells that may have escaped into your bloodstream or lymphatic system
A good friend whose mother is stage IV gave me comfort while I was waiting for results by telling me that if it had spread I would probably have symptoms. She told me, you don't have a cough or breathing problems, you're not having seizures, your liver stats are normal, you have no bone pain or extreme fatigue, so until proven otherwise you should assume it hasn't spread.
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Hi Lindzanne!
Some thoughts from another Stage IIIer.....
1) Scans aren't just about finding out whether the cancer has spread. They help establish a baseline which allows your doctors to track what is happening in your body over time.
2) Cancer is weird and unpredictable. There is no single path it takes (breast to nodes to whatever). Some Stage Iers progress to Stage IV while some Stage IIIers have only localized cancer.
3) There's no shame in taking anti-anxiety or anti-depressant meds. I'm a poster-child for "better living through chemistry."
4) You may not be able to control what is going on in your body; you can only control your response to it. I prefer to "enjoy every sandwich."
Hope your scans go smoothly and your oncologist finds a plan that will work for you. ((Hugs))
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I pray we all get through this..
It's amazing....I used to worry about things - other trivial things - that I know NOW were just trivial things....
Now, this happened...and I can't believe I thought my other problems were actually ever worth worrying about....
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Linzanne & others whom have recently been dx.
SORRY !
Its a scary roller coaster. I have been here for 2 1/2 years. My surgeon ordered a PET scan, as my 6 nodes were matted, fused & bursting open with Cancer. ( extranodal extension ) I told him no thanks, I have enough info, start the chemo. He then explained if I was stage 4 my treatment would be different, not as aggressive. Had chemo, rads & Arimidex. Never felt I was going to be one of the lucky ones. Well once for about a minute, I toyed with the idea of beating this.
This post sounds too depressing, but after 2 1/2 years I have met here on BCO with many, many ladies dx with very grim stats & are living healthy, productive happy lives. if you look for the threads with stage 3 ladies that are 5-10 years out you can read about there treatment.
I had the suffer in silence mentality when first dx. No anti -anxiety meds for me, I can tough it out. Big mistake! My mantra lasted about 6 months, all through chemo, but 1/2 way through rads I became unglued. No shame in getting meds, whatever it takes to keep YA moving, and take the edge off. Join the chemo group that starts when you do. Most likely you will have A/C to start.
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I agree about the anti anxiety meds. I remember my PCP only giving me 10 xanax....said she didn't want me to become addicted. I ended up on the BS office shortly after crying and with no hesitation she wrote me for 30 with refills.
What you are going thru is difficult, so what you are feeling is normal. Hearing stage 3 is terrifying and having a PET to see if it has spread is agony, the wait.
This WILL get easier, once your plan is in place you will then have a focus on how to fight.
I agree with HI1.....A/C is likely in your future.
Keep us posted ((hugs))
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thanks so much for the thoughts and hope ladies. It means so much right now.
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Echoing everyone's thoughts here about the anti-anxiety meds....Lindzanne.....Please ask your PCP or BS for these meds. I would not have survived these past 7 weeks without Xanax.
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Hi Lindzanne,
So sorry to hear about your diagnosis and knowing how frightening it is - especially waiting for scans to check for further spread.
In 2007 I was diagnosed with stage 3c too with more than 24 lymph nodes affected. I truly get how you are feeling right now. I was terrified and my children were 6 and 10.
To cut a long story short I had TAC chemo and 7 weeks of radiation plus 2 years of tamoxifen and 5 of arimidex.
I'm doing really well now 9 years later. Enjoying life, having fun and watching my kids reach 20 years old and 16 respectively. I remember when I was at your stage I was also really reaching out for hope and positive stories.
I think that nowadsys the treatment is even better, more targeted, more specific to your individual case.
The main thing is - take it day by day and step by step. Try to have other things to look forward to as you progress through your treatment - do whatever it takes to make it more bearable for you.
As soon as your scans are over and you have your results you will be able to get your treatment plan in place and you will be able to focus and get through it.
Sending you all the strength in the world. This is the worst part.Take it gently.
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I am so sorry you are going through this. Know that you are not alone.
I was diagnosed in April with stage 3c triple negative breast cancer, one of the most difficult types to treat. My tumor was almost 2" and had spread to 21/21 lymph nodes. Surgery got it all out with clear margins and I am currently on AC chemotherapy, then Taxol, dose dense, and headed for radiation after.
Like you, I was devastated. Have an 11 year old at home, in my 40s, and want to live a long time. I couldn't sleep for about two weeks and cried and cried. Here is what helped me:
1) Cry. Let yourself be emotionally ragged and feel it all. This is not the time to be a hero.... Feel the whole range of emotions. "The only way out is through," said my support group leader.
2) Take meds if you need them. There is no shame in Ativan, Ambien, Xanax, etc. And if ever there was a time to take them, now is it.
3) Ask for support. One week after my diagnosis four friends came over and brought lunch and beer. We cried and laughed and the love was palpable. I wish you a circle of such love.
4) Know that there are stages to this process and you too will find some ground. I know it is hard to see now... So hard. Empathy and love to you.
Ask for help. You are already reaching out and that is a good thing! Radical self care and compassion and love to you. Keep us posted please.
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Hugs to you, Lindzanne, from another IIICer. Try to focus on getting through one day and one week at a time, at least for the time being while your emotions run wild. I was in shock for most of last summer, and I cried a lot. I couldn't imagine there would come a time when cancer and the fear of mets wouldn't rule my life, but here I am a year out, and I'm in a stable place emotionally. I have different concerns--and I'm sure I'll never be free of worries--but the intense, gut-churning fear is gone. I wish that for you & trust you'll come through this with strength.
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Hi JenPam your me a year on. Very very similar diagnosis I hope I will be as together as you are.
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Helen, yup! And here I still am!
You'll be amazed by how quickly it goes. Focus on one treatment at a time & don't be afraid to ask for help. LMK if you need any online support. I hope you've already checked into your monthly chemo thread.0 -
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Linzanne, i am so sorry you are going through this. this is a phenomenal group and a testimony that we all can get through a stage IIIC dx.
its been alittle over 11 years for me , and doing the happy dance every day.
come here often for support and reassurance as we've all been there...
hoping you have a gentle road.....
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Linzanne, I'm sorry you're here, but glad you found us. We've been through it all and understand very well the feelings of freaked-out, sad, scared, mad, and confused.
You need to sleep and you need to break the cycle of terror. Ask your doctor for prescriptions for sleeping (Ambien) and antianxiety (Xanax, Ativan) meds. You won't get addicted.
Cry as much as you feel like it. Like Tectonic, I cried for months, off and on. Once I was so spooled up I tried to crawl under the bed to cry, but my head didn't fit under the mattress. Another time I screamed and screamed -- "I am not doing this anymore! I want out!" But I found that taking one day at a time...one day at a time...the days of treatment clicked past and I was doing it.
Find something to do that doesn't involve breast cancer. If you're employed, try to go to work. If you're not, or you just can't, read books. Walk. Get an adult coloring book and find your creative side. Sew an apron. Don't sit around and think about cancer.
Get outside as much as you can, and get some exercise. No kidding, it really, truly helps. Gentle mountain biking got me through surgeries, chemo, and radiation.
Come here when you need us. Anytime.
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Oh sending you all a hug! THERE IS HOPE! I'm a Stage 3A survivor and my sister is a Stage 3C survivor just finished treatment recently, and one more, my mom is a Stage 1 survivor.
As I was with my sister in the surgical prep room, her breast surgeon came in and starting talking about lymph nodes to us. She said that every woman's nodes are a different size. She said the lymph nodes are like soldiers and once one is affected, others rush in and literally move, to help fight the fight. That is why lymph nodes clump together when there are more of them involved. She also said that some women have much larger nodes so less have to move in to help. But some women who have smaller nodes have a whole lot of them rush in to help. So having a lot of nodes involved means the nodes did their job to stop the spreading of cancer to other organs.
She also told us some stories about some women whose nodes did not do their job and they were Stage IV no nodes involved.
At this point we knew she was preparing my sister for a lot of nodes, which she had, but her little pep talk about lymph nodes, certainly helped us then, and continue to help us every day.
I hope that helps you too! Sending my very best!
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