In shock

bennymuffins

Boy, I wonder how many people have started a thread with that title in this forum. Probably a few.

Anyway, I am 54 years old and was just diagnosed this morning with BC. I've had two biopsies on breast and lymph nodes. They are removing all my lymph nodes on the right side so I am assuming it is advanced stage. I meet with the oncologist tomorrow for a list of tests I have to do (CAT scans, etc), then will find out what stage.

This came totally out of the blue for me. I have always been healthy, been a vegetarian for 32 years of my 54 on the planet. I am in total shock, like a nightmare that I will awake from. I am alternating between shock and crying. Please take no offense to this, but this is not a forum I ever wanted to join.

The counsellor has told me to 'stay neutral'; do not catastrophize my situation. Don't start thinking about death, but it's so hard not to.

New-girl

You are in shock.  Breathe deep and stay near positive people.  Best advice I got.

michellej1980

Hi bennymuffins. I'm sorry to hear your news. I just want to say don't panic until you now exactly what your are dealing with and have had a proper chat with your doctor. From what I understand from reading this forum for the last few weeks is that lymph node involvement doesn't necessarily mean 'advanced'. Good luck with all your tests and spend time here on the forums - its a great place to share your worries, ask questions and learn so much from others who have gone through similar experiences.

Moderators

bennymuffins, welcome to BCO, although we're sorry you had to join us too!

We hope you'll find the support and information here to help you get though this. If you check the pinned thread at the top of this Just Diagnosed section, you'll find links to some very useful threads to get you started. 

Best wishes,

• The Mods

FilterLady

Hi bennymuffins, I'm sorry to hear your news as well. 

I agree with michelle.....don't panic and don't google, since at this point you don't know exactly what you will be dealing with.  Only pathology can give you a diagnosis so that you can begin to make decisions and move forward.

My regular mammo followed by ultrasound that "found" my bc was 1 year ago tomorrow.  I can't believe how far I've traveled and in 2 weeks I'll have my first post diagnosis mammo on 9/12.

Time drags while you are awaiting a diagnosis but after that time flies as you take the steps needed to a better, stronger self.

Come here anytime to vent, ask questions, cry, and most of all learn from many other women who have "been there, done that".

(((((((((((((hugs)))))))))) to you.

LaDonna

ro-berta

Bennymuffins, so sorry you are here hon, don,t have any great advice but i will tell be kind to yourself, this is the worst part . If you need to cry, cry. there are a lot of kind and wise women here(as you see) What ever time of the day or night there is always someone on these threads to reach out to. I,m just fresh out of radiation now , or as other say on the other side, I didn,t think that this moment would come but i did.So please be kind to yourself and breath. ( lots of hugs from me to)

   roberta

Anonymous

Bennymuffins

So sorry you're going through this.

1. Just because they're removing all the lymph nodes, that doesn't mean they all have cancer. Some people on this site have had many removed, and few were affected.

2. Just because it's in the nodes doesn't mean it's moved to other organs.

3. Try not to go into this, thinking the worst.



There's a thread on this site for women who aren't stage IV, but have questions. They can help you a lot more than I can, but I wanted you to get some comfort right away.

I was just diagnosed on July 27, so I don't know my final diagnosis until after surgery, but I'm believing for the best!



Blessings

Paula

bennymuffins

Oh thank you so much for the quick and thoughtful replies. I feel better already just knowing you all understand the fear, shock and confusion. Yes, it's hard not to jump to the dark places right now (you know, funeral planning, giving away possessions, etc.) I can still hear the doctor's words at 1100 hours this morning: "I am sorry to say it is bad news". I heard very little after that, except when he said I will have ALL my lymph nodes removed. I have a lot of questions for the doctor and will have an opportunity to ask those tomorrow. Like, how can you have cancer when there's no lump? Just these microcalcifications? Anyway, it's funny how it changes your thinking so quickly. For exmaple, I'm listening to the news and they're talking about a few mosquitoes found to be carrying West Nile Virus. I would have thought that was important up til this morning. Now I'm thinking West Nile Virus? You folks are worried about West Nile Virus??? I can trump that! LOL

Okay, well, I am so glad I found you all and will stay close by. Thank you for the resources, the support, and the hope. I have to say that not one single medical person said anything hopeful today. They just kept saying 'we don't know'. I am hanging onto any glimmer of hope that I come across.

proudtospin

Benny, stay busy till your next test as they all take too long!  You will get lots of help from here and tons of info

for tonight, go to sleep and try try to sleep, tommorrow you can attach when you are stronger

Anonymous

Benny

Are you seeing a breast cancer specialist? If not, please see if there's a breast cancer center in your city. They are the best. They do this everyday, and I think you'll really get the best care there.



I was very blessed in finding just the right place in my city. There was a lady who used to attend my church. We didn't really know each other except in passing. "Hi Holly, how are you?" " I'm good Paula, how are you?"

Then in July, one week after my routine mammogram, I had an ultrasound. While still sitting on the table I got word that they were 75% sure there was a cancer. They asked me to choose a surgeon that day. So, I went straight home and called Holly, who is almost 10 years into this battle. She calmed my fears, prayed for me, then suggested the Stephanie Spielman Comprehensive Breast Center.

My surgeon, oncologist, testing, and treatment are all in one place.



Make sure you feel confident in your doctor. If you don't fully trust them. Keep looking.



Blessings

Paula

mdg

I felt the same way when I was diagnosed.  I have been a fitness instructor for over 25 years and led a healthy lifestyle.  I was completely shaken by my dx.  The beginning was the hardest part.  WHen you know what you are dealing with and start treatment, somehow you just start knocking it out.  None of us wanted to join this club, but I am glad there is a club of such wonderful women that helped me go through every step.  Please keep us posted on your diagnosis and treatment plan.  Best of luck and a large cyber hug to you! 

curveball

@bennymuffins, have you asked your doctor why all of the lymph nodes are being removed immediately? Was cancer found in the lymph node biopsies? You might want to consider getting a second opinion to see if sentinel node biopsy is an option for you. If you can do SNB, you're much less likely to suffer from lymphedema than if you have all the nodes removed.

I know you are in shock, but from all I have been told since my diagnosis, there is no need to hurry into surgery in most cases of breast cancer. Lots of people have an interval of a month or more between diagnosis and their surgery--it was over two months for me. A brief delay gives you time to get your wits about you, gather information, and make a decision that's right for you rather than hurrying into something you may regret later.

Hope that helps. I wish you lots of "later", and no regrets!

P.S. none of us wanted to be here, but it would be even worse to have breast cancer and nowhere to go to ask questions, blow off steam and just know there are others who "get it".

bennymuffins

I am terrified that they will tell me it has spread to my brain or bones and that it's no longer treatable. I am thinking what could be worse than this? To go from completely healthy (or at least that's how I felt) to dying in two days is pretty hard to comprehend. I read the thread about all the weird symptoms you all were having and I had alot of them, itching, weird body odor, dizziness, etc. But I never expected this.

Curveball, I don't think I have an option on the surgery. I am in Canada and we get what we're told here (I think). I will ask him tomorrow tho'. I know that the doc who did the biopsies (they took 10 samples) is a top breast cancer specialist in Calgary, Dr. Paul Burrowes. The lymph node biopsies were all cancerous.

Mkelley30

Everybody feels the way you do when they hear this news. I'm still walking around as though I'm in a tunnel and everyone is outside. The best advice I can give is to take someone with you to all your appointments that you trust will take notes for you and listen to what is being said. Our mind protects us from bad news and tunes out after the "cancer" word. You're going to be inundated with information and asked to make choices that are so hard. I hope this helps, a little Xanax might be good right about now too! Hugs and best wishes.

jenlee

I'm so sorry that you're in this situation.  But you've come to the best place I can think of for information and support.  I never could have made it through the past ten months without the support of the women on this site. The information was invaluable as well.  Please do keep us posted and we'll be there for you.  Sending positive thoughts and hugs, Jenifer

ridergirl

Ok bennymuffins first comes big hugs cause we all need those. Second, welcome to a place you never wanted to be but will probably be glad you found under the circumstances. I know i sure am. One of the best pieces of advice i got here at first is..write everything down. Keep a list of all the questions you want to ask your dr. There will be too little time and too much info when you are there and you will forget things you wanted to say. Also write down or record if you can the answers you get. You will be able to go back over it when your brain slows down. Even better take someone you trust with you to help sort out all the info you get and help keep you sane.

I too am in Canada and no we do not necessarily 'get what we are told.' If you need more info, more time or even a second opinion we have those rights. Do not let anyone force you into a decision you are not ok with. Keep in mind that our drs know more about cancer than we do, but we know ourselves better than anybody.

Best wishes to you and please keep us posted. We are all here to help in whatever way we can.

Beesie

benny, I'm in Canada too.  There are lots of us here, and there is even a Canadian forum on this board that you should check out .  It's near the bottom of the list of forums, in the Support and Community Connections section.

In Canada you have all the choice in the world about your surgery.  And you can get a second opinion if you want one.  It is a bit unusual to have a needle biopsy done on the lymph nodes. Do you know how many nodes were biopsied?  Certainly if even just one node was positive, then usually more nodes will be removed (although there are some recent studies that are changing the direction on this - not removing more nodes if chemo is going to be given anyway).  But the question remains about how many of your nodes need to be removed.  This is certainly something that's worth discussing with the oncologist when you see him tomorrow.

Good luck with the appointment.  I hope that you the oncologist is one who communicates well so that you get your questions answered, rather than coming out of the appointment with more questions. 

Edited to add: ridergirl, I just saw your post.  We were writing the same thing at the same time! 

Mindy703

Bennymuffins I know exactly how you feel. I have always been healthy. I have not been officially dx'd but had bilateral biopsies today. They said the irregular mass on my left breast is most likely malignant. I have recurrent pain in my back and liver area but always brushed it off as possible gall bladder problems coming on. Now I feel like I have cancer everywhere. I am 41 with 3 children. So tired and sad. My left breast is burning and my procedure was at 2:00. Anyone experience that after biopsy? Also, did they check your lymph nodes when they did your biopsy or does that come later? I should've asked but new to this! Btw today is my 13th wedding anniversary, what a way to celebrate!

DC197

Hi bennymuffins,

I'm so sorry that you have received this dx.  Don't get ahead of yourself. Breathe deeply and take one step at a time. And please don't use Dr. Google to find information, he will only scare the hell out of you.  The women on this forum have been through this and will tell it like it is.  

Whatever the pathology shows, you are treatable!  As you can see from my signature, I am stage IV and coming up on my 2 year cancerversary and still feel well.  No one has an expiration date stamped on them.  I hope yours has not spread beyond the lymph nodes (the lymph nodes were doing what they're supposed to do - keep the cancer cells in check).  But these days, breast cancer is treated more like a chronic disease.  We just live with it while the research continues to look for a cure.

So, here your cancer sisters will hold your hand, give you hugs, comfort you on bad days, and celebrate with you on the good days.  Be kind to yourself ... I know the waiting is tough.

(((Hugs)))

Diane

ridergirl

Yes mindy the boob was not happy after the biopsy! Left the hospital feeling fine and was great til.the freezing came out. Then the burning started. Good news tho i felt 99% better by morning. Had a lot of bruising too and it also was way better by the next day. Something to look forward to :-)

curveball

@bennymuffins, since all of the lymph node biopsies showed cancer, I now understand why removal of all the nodes is being recommended. Even so, it can't hurt anything to request a second opinion. At a minimum it will give you a second explanation of everything you didn't hear after the word "cancer" at your first consultation.

@beesie, I had a lymph node that appeared suspicious, and had a needle biopsy of it before my surgery was scheduled, in a second procedure where I also had ultrasound to check an area that showed up on my MRI. Maybe needle biopsy of lymph nodes is unusual but not unheard-of?

@mindy703, that burning feeling may just be because the anesthesia is wearing off. My needle biopsy site was sore for a few days, and then itched after that, which really caught me by surprise. However, when I called the nurse at the imaging center where the biopsy was done, she said it was not unusual for the site to itch while healing.

bennymuffins

Well, I didn't sleep last night. It is still all very surreal. I was somewhere between sleep and wakefulness. I had weird weird dreams/thoughts and was thinking the cancer has now spread to my brain in the past 5 hours!

I do have friends who have committed to helping me at appointments, but I don't want to burn them out either. 

With regard to the lymph node, I saw one black round spot on the US and I thought they only biopsied the one but I don't know now. He took 4 or 5 samples of them I think. When I asked my regular GP about why removal of all is necessary, he said something about one palpable one was cancerous but we don't know about underlying ones? All this new terminology..... I am clueless. 

Thank you for the hugs, I so desperately need them. I have no family, no husband, no kids, no siblings. I do have a small circle of friends but like I said, I don't want to burn them out.

Ridergirl, what do you ride? Bikes? Horses? I just lost two horses this past year (all within 6 months) and I am wondering if that triggered this health crisis. I was so hoping the year would get better but instead it has got worse. Much worse.

I don't want to go on chemo, I don't want to lose my hair. My hair has always been my crowning glory. It is warm blonde and down the middle of my back. I love my hair

DC, I am so very glad to hear you are well (hug)

Lesleyanne67

Bennymuffin



So glad you are getting advice from other Canadians on your choices A's I am not personally familiar with different requirements and limitations in regards to your provincial health care.



Mostly I just wanted to pipe in that I was diagnosed right when I turned 41 and no one in my family ever had breast cancer or any cancer to speak of.



As everyone has said the waiting is the hardest part, it is true, even harder than treatment because there is so much anxiety in the unknown. That is also why breast cancer.org is so awesome you can chat with others who have traveled before you. Everyone is different but at least hearing from a loving human who has been there done that really eases that fear.



In any case I had to have a full node dissection. I had a few positive nodes but my tumor was large AND I ended up having BRCA2. I had a double mastectomy and full node dissection. I have had a couple major injuries despite my best efforts to baby my potential lymphadema arm. I have been super lucky I have no lymphadema and o know someone who just nicked her hand gardening and she has it. We are the same age same basic diagnosis and treatment...so it is anyone's guess and I truly have gotten to a place where I just don't fret over things I literally cannot control- took time to get here and likely one of cancer's "gifts" if you will.



In any case despite the full node dissection and large tumor I was still only stage 3 I will not even tell you not to worry until you know your srage because it is next to impossible not to.



The only other thing I can say is treatments and targeted therapies improve every year so even if the worst occurs the longer you get the better a chance for a cure. There are people with bone and/or brain meta that love 10 years with good quality of life so you will have options and support if it comes ro that BUT it may not!



As for the hair all I can do there is offer hugs and support that was the hardest part for me. It is tough but yoh can get through it. The up side is you don't haveto shave for a while, and you can get ready fast. : ). It does actually grow back although I despised when people said that to me, especially people who did not have cancer or alopecia. I give the alopecia gals serious credit, theirs never does grow back.....



Happy to answer any questions and thinking positive thoughts for you!



Lesley

Shirlann

Hi sister, all the things you feel are exactly what we all felt.  Remember, though, breast cancer is 80% curable.  I am just approaching 14 years of wellness, I have gotten to a place I hardly think of cancer anymore.  You will be there too.  If you get too stressed, ask your onc for some chemical help.  No need to make this miserable journey any worse than you need to.  Waking up at 2 in the morning (very typical) is something you don't have to do.  Get some Ativan or Zanax and keep it by the bed.  Pop one at 2am and think of your last vacation.  Also, I took one on the days of appts., procedures, makes it all easier.  You will be just fine.  Post often and wail and moan, this is what we all did and still do.

Gentle hugs, Shirlann 

Mindy703

Rider girl,

Got my results. IDC grade 2. Meet with surgeon tomorrow@ 2:30. Will he be able to tell me anything? What surgery does he recommend? Has it spread? I have had some problem with an enlarged liver and a pain in my middle back. I am worried it has gotten into my liver. Do you know anyone that has had this and symptoms? Would it have mets before I ever found a lump?????

Mindy

ali68

Hi, I'm 44 and just finished all my treatments. I was stage 3 grade 3 with more than ten cancerous lymph nodes. I have had chemo, lumpectomy and rads and now cancer free.



Have hope and you will get through this shit, be good to yourself and say no when you need too.

ridergirl

So sorry you didnt get good news mindy. I would hat to try to guess What your next step is as i dont have too much experience there i have not had any surgery other than the biopsy. I would think they may send you for bone scan/ CT just to be sure its not hiding anywhere else. That is what happened for me. I'm sure lots of other ladies will come along here with more advice and experience but i want to give you hugs and wish you the best possible journey through this maze. You might want to post also on the IDC forum there should be more good advice there specific to your diagnosis.

Mindy703

Rider girl,

Thank you for responding. Just to talk to someone in the similar boat is somehow comforting. What is your story? I would love to hear it , only if you want to share.

Mindy

Denise-G

Bennymuffins - Well, you can't help but think of dying.  I sure did one year ago when I was diagnosed.  I am so very sorry you are going through this.  It seems so daunting, but you make it through.  I knew my cancer was Stage III going into it with a lot of lymph node involvement.  Docs were actively looking for Stage IV, but thankfully, they found some things, but they were not cancer.  

You are in the most terrifying part of the journey.

I had mastectomy of one breast, 14 nodes removed, chemo, then radiation.  It is almost a year, and I am doing really well cancer free.  I never thought I would ever feel this good again.  But I do, and so will you!

My blog followed my journey with BC from day of diagnosis.  I wrote about every step of the way for therapy.  Now I am helping others.  You will as well.   Thoughts and prayers are with you! 

purple32

No offense, benny. 

 None of us wanted to be here , but this is a good forum for info and support.

You are jumping  way ahead and you will overwhelm yourself in short order.

BREATHE.

One step at a time, one day at a time.

Best wishes to you.

stepmic

I started seeing a wonderful counsellor the day after my diagnosis in April. I have seen her regularly since then and timed my appointments to be after milestone tests or appointments. This helped me in a huge way to deal with my dx, UMX, waiting for results, family issues, everything that stressed me. It was covered through my EAP at work. I highly recommend getting therapy if you can to help you through this huge life changing event.