It just hit me

DMHGF

Hi AngieB92

I will have pathology results on Tues but no plan until I meet with my MO on the 25th. This waiting really is by far the worst (aside from the actual diagnosis) This group has been a huge help and I plan to stay plugged into it. I get honest advice, answers and support that I can't get from loved ones. It's not their fault. They just aren't in my body or brain so can't fully get it :-)

I'm grateful for you all.

Ingerp

DMHGF—you can do some poking around on this site to see what your likely treatment plan will be after you get biopsy results. It’s pretty formulaic as to what will be recommended. I knew exactly what I’d hear from my MO before I ever met with her. If you’re ER+/PR+ but HER2-, you’ll likely get an Oncotype test to determine if chemo will be beneficial to you. If you’re triple positive and the tumor is < 2cm, you’ll likely get Taxol and Herceptin. Wait until you get your biopsy results and then start looking for women with a similar dx or start a new thread with your tumor characteristics. You actually don’t have to wait until the 25th to start to process this/prepare yourself.

RadQueen

DMHGF, know how you feel. as a type 1 myself. I thought I had it under control. Rolled with the biopsy had to wait 3 weeks for the FISH to come back as the original HER status was indeterminate( called the nurse navigator every day) it came back negative. Next step surg BMX with DIEP flap lymph nodes were neg, healing well. Was good to go on the mend just had to wait for the Mammoprint.

Got he results Thurs. High, now am looking at chemo. I was prepaired to take a pill for the next 5 to 10 years but chemo scares the hell out of me. I work in the medical field and I know what it can and does to people. How I will react to it is unknown and not knowing makes me crazy. Will I be able to work? In my job there is no light duty, and working in a hospital what will I get exposed to, with a weakened immune system. So can I safely work don't know. Can I miss 3 months of work and still have a job? Dont know. So much unknown, and still wont have any of the answers till I talk with the MO on Friday it's going to be a long week.

DMHGF

RadQueen you are in my spot.

If nodes come back neg I still have to wait because my MO is ordering oncotype. My Ki67 came back super high (88) on biopsy which has her concerned. I too was thinking okay, surgery, some radiation and 5 years of pills. Chemo scares the hell out of me too! I'm not sure what it will do to me and if I can continue to keep up with what until now have been 16-17 hour days.

If not our lives are going to be completely upended. I am so sorry you are forced down that road. I guess we just have to do what we have to now to make sure we have a chance to rebuild later? Yeah, I can't feel that right now either but they say it will come. I'll be waiting for that day and praying you find peace in it all too. Right now it just plain sucks

Hugs.

CFKelly

Other than that one time I had a panic attack while hiking (in all fairness to me, the name of the trail was Precipice, it was aptly named) I had not experienced anxiety or panic attacks until I was diagnosed with breast cancer.  

I unfortunately know a lot of women who have also had it.  I found them to be the most comforting.  One of them welcomed me to The Club.  Until she said that, I didn’t know it existed.  

I am 1 year out from surgery.  The anxiety has improved, but not gone away.  I am not sure it ever will.  I am a private person but decided the only way I could cope with the anxiety was to tell someone when it was happening.  Even family or friends who aren’t in the club were helpful thru the worst of it.  

Eigna

I’m in the same boat with you girls. Don’t know when surgery will take place. Waiting to see the BS on Tuesday. I hope I don’t need chemo cuz I’m so scared of it but deep down I have a feeling I will do chemo ( knowing my bad luck). Try to be under control but when I am alone I do cry almost every day. Is this normal? Or am I going through depression? I won’t know for sure what the treatment plan will be until I do the surgery but it is so hard all of it. I don’t know if I will be strong. I’m already weak and I haven’t started yet

DMHGF

Eigna

I'm so sorry you are having to travel this road. I think crying can be good. We need to release the fear in whatever way works for us.

I'm not feeling too depressed but I am angry and scared. Mine is coming out mostly in dreams so far. Really crappy dreams. I am trying not to have a good cry because I'm afraid it would never end. I think whatever you are feeling and however you deal with it are personal and probably normal from everyone's advice on here.

I am recovering from surgery right now, which sucks, but the waiting for "the plan" is the worst.

I too have a feeling chemo may be in my future but until the words are said I'm holding on to the possibility that I might just be spared. I'm preparing for the worst and hoping for the best. It's the only control I have at this stage of the game. I will keep you in my thoughts and hope the same for you.

Take care and let me know what's happening with you. Whatever the road, it's good to have someone to bounce your thoughts and feelings off of. I'm here for that anytime.

Eigna

Thank DMFGH! I will keep you in my thoughts too and let you know how I am doing after I see the breast surgeon. Hang in there

Sportymom

@DMHGF, @Eigna, and anyone else. You are in the worst part. The not knowing will cause anger, fear, terror, and sadness. My advice (take it or leave it) is to let yourselves feel everything. You need to give yourself the opportunity to feel and grieve in order to move forward. And don’t worry, you may be feeling these things for a while. At the beginning I cried everyday, I felt panicked everyday. It does get better; however, you are in the worst now. The not knowing, the uncertainty, the times when your mind wanders, the fear: all completely normal.

I am further along in my journey and am receiving the most aggressive chemo they could give me based on my specifics. Let me tell you that the preconceived notions of chemo can get the better of us. I was terrified. While I only have had one cycle, my experience has not been that bad. I still am active, try to eat enough (my nerves still get the better of me on this one), keep busy, and keep putting one foot forward and show up. There are still bad days in terms of sadness but as others have said on different parts of this forum, all you have to do is keep putting one foot in front of the other and show up. This is true for any treatment you receive.

That said, family and friends are really important. If you are still feeling alone then breast cancer support groups are immensely helpful. I did not attend these sessions until a while after my surgery (so start when you need) and the ladies there were so helpful. Look into these groups at your hospital and know that they are a fantastic resource.

In addition, I can also say that my MO is hugely supportive of keeping busy in every way possible; physically, mentally, emotionally. He was telling me how important psychosocial immunology is and what an important role it plays in everything related to cancer. So continuing in your job if you can or want, picking up or continuing hobbies, keeping active, and simply doing things as best you can will help you immensely. As a sufferer if OCD and GAD it is true that that an idle mind is the devil’s workshop.

I hope you all start to feel better; however, don’t feel badly if you don’t. This journey sucks. There are bad and good days for all of us. Know that you are not alone and that we are here to talk and bounce your feelings off of us.

Hugs.

Askmissa

Eigna- Attitude is everything. Don’t think that you have bad luck or that you’re weak. I had my Bilateral Nipple Sparing Mastectomy and reconstruction with implants on August 19th. I’m waiting for my oncotype to see if I will need chemo. I will find out on the 17th. Take it one step at a time. It’s hard for me waiting right now and I do feel I’m depressed but for good reason. If you need to get on an antidepressant or get Xanax to relax and help with anxiety- there is no shame in that! Take care of you so that later you can be there for your family. Stay strong! We have so much to be thankful for. There is always a worse situation

Look for the best hospital in your state and find the best surgeons and oncologists there! A teaching hospital with a medical school is a great option! https://health.usnews.com/best-hospitals/area

edwards750

We all feel your pain emotionally and physically. Been there, done that. Just so you guys know you can do this. I’m proof of that. I’m 8 years out last month and I felt exactly as each of you feels complete with anxiety, depression and fear. It does get better with time I promise you.

My family was supportive but my “rock” was s friend who is a nurse at St. Jude and a BC survivor herself. I also foundsolace and help from a support group at my church.

We are branded with the C word but it doesn’t define us.

Don’t be afraid to ask for help from the hospital, doctors, church members / whoever can assist you in any way. There’s no shame in that whatsoever. I had s nurse navigator from the hospital who was awesome. She was assigned to me.

So keep the faith you aren’t alone. We are all here to help and keep us posted.

Diane

AngieB92

Awesome post, Diane! Thanks! I felt the out-of-control spiral too. The anxiety that I could do any of my normal life activities because it would cause the cancer to spread or I would make it worse. When I asked my MO about doing daily chores (we have a farm) he said he encouraged me to keep doing my daily activities- including my job- but said that later treatments would see me a bit more tired and it would take me a little while longer to bounce back. He had a patient who ran 10 miles a day, even during chemo! But when he said it took him all the next day to recoup my MO said “well then try running five miles.”

He said don’t stop doing something unless it takes you longer than 20 minutes to recoup Don’t stop living while you’re being treated.

That made all the difference in the world to me. I know I will have bad days but it’s all temporary.

trinigirl50

Chemo was not fun but I was able to work through it, I had the full blast ACT and then Taxotere because I had allergic reaction to Taxol. I do work from home which was easier. I had meetings via Skype so I didn't need to be around too many people. I wore headtie and most people didnt even know I was in treatment. I didnt hide it, but found it wasnt necessary to discuss most of the time. I did get someone to drive me to and from chemo but looking back I would have been alright driving myself. In fact right after chemo IV I was usually high energy from the steroids. I felt a bit bleah on the third day and usually back to normalish on 4th day. It's not a walk in the park but it's not as bad as the movies (well that was my experience anyway). DMHGF High ki67 and Eigna Pr- chances are they are going to offer you chemo. It is doable. Read up on tips (like drinking lots of liquid during IV) they make a difference. Good luck.

DMHGF

Thanks trinigirl50 I hope I handle it as well as you if that's where I'm headed !!

Seriously my biggest concern with chemo is the affect on my thinking. I've heard can cause a loss of focus and memory issues? I am heading into the most intensive part of my business year and it's a lot of statistics, analysis and mountains of already unorganized chaos. It's hard enough to tackle with clear head !

Have you or anyone experienced any of these memory or focus issues? I'd like to hear first hand just how they affected you. The articles are just a list of possible effects, not degrees or real life implications.

Take care all !! Hugs all around :-)

Eigna

DMHGF, do you have a treatment plan in place or not yet? Me not yet. Surgery is set for October 10th.

DMHGF

Eigna.

Wow. I'm sorry you have to wait so long for surgery. The waiting for each step has been frustrating for me

I'm hoping to have a plan next week. Surgery was step 1 now just waiting for the oncotype to come back.

DMHGF

So I had my post op with my surgeon today and we went over the path report. The tumor was twice the size originally thought but nodes were neg, so good news. ER was still super high (98%), good news. PR was only 4% so virtually negative, not bad news. Stage and grade were moved up from original, still not horrible...

Then when I thought I was done my navigator called me into a meeting room. My oncotype results came back early (expecting results next Wed when seeing MO) and they weren't good. Scored a 39. She went over the charts and everything but this was the first time, in this whole journey, I seriously just zoned out. I didn't hear anything past " I'm sure chemotherapy is going to be part of your treatment plan"

I've read the stories on here, and know it's manageable. I've talked with family members who have been through it and logically I know I can do it... but I am absolutely terrified all of a sudden.

I didn't explain before but I lost my dad to cancer in November. I was there through the chemo, the radiation, and I watched him suffer, lose memories and coordination and eventually take his last breath....which let me tell you is nothing like the movies. It is embedded in me and it took therapy to help me cope with what I experienced in those last few hours.

I know this is different. I know the chance of that being what happens to me is not high. And until today my anxiety has been under control. For some reason the fact that I will need chemo makes all of it more real....the actual threat, the idea that just maybe this isn't just something you treat and get over, that maybe I don't see my grandson grow up, that maybe my daughter goes through what I did with my dad....

I'm not one to freak out, but I am rattled for sure. I haven't told my family yet. I'm trying to get myself in a better place before I do. Is it a bit nuts that since right after the shock of the dx wore off I've not really worried? And now just the word chemo has got me balled up on the floor terrified?

The cancer may not get me but I'm thinking the anxiety just might. How do I reroute my brain to the positive stuff ???

Anonymous

I'm a bit behind you in timeline, and won't have surgery first, but just wanted to say I hear you about managing the anxiety. I am generally an anxious person and yet somehow, once I got through hearing the words cancer and chemo all the anxiety for everything else in my life seems to have melted away. I gave myself time to process the diagnosis and initially proposed treatment path - if the chemo has risks but also may keep me alive longer, then that will have to do for right now. Any other worries about the outcome of the diagnostic tests and chemo outcomes can come in the future, which I can't really control. The best I can do today is make the best decisions I can with the knowledge and information I have. But what I can't do is let the cancer take over my enjoyment of today - that I can control.

I've found it really helpful to read the chemo threads, especially the group threads, to see that its not like in the movies and for the most part people continue with their lives as normal. I thought I was going to be bedridden for four months or something, eating broth and aching bones, sick like my grandpa was when he was dying of skin cancer. That has helped me to worry less about going through the chemo, since the other two pieces (surgery, radiation) I can handle.

Given your recent history you may want to perhaps consider an anxiety med for the time being?

milolucymom

This is so helpful! I was just diagnosed last week with IDC; tumor is only 8mm and all the path. results were good--I guess as cancer diagnoses go, about as good as you can get. I've been focusing on that, but starting to worry about how I'll cope. I live alone and all treatments will be 90 miles away. So far, I've driven myself, and will to the MRI next week, but I'm thinking another set of ears would be good at the first meeting with a surgeon...just afraid I'll miss something important. I'm also a very private person and struggled with who to tell. So far, just a handful of close friends who have all been incredibly supportive. It's not that I want to keep it a secret--I like the idea of letting it be known after surgery. My biggest concern right now is scheduling. I'm a performance artist and have one Christmas poetry concert scheduled on Dec. 1. My doc said surgery within 8 weeks, so that means get it done early in Nov. and hope I'll have enough stamina to rehearse and perform on the date. Hoping the surgeon will understand how important this is to me, and work with me. All suggestions appreciated! Also for dealing with stress...Thank you.

milolucymom

Not sure I'm doing this right...whether I should be posting as a Reply, or starting a topic, but here goes. I'm Christianne and I was just diagnosed this past week with IDC. Since the tumor is very small--8mm--and HER2-; ER+ and PR+, I've been feeling pretty positive; now I'm starting to freak out. I live alone and am trying to figure out how I'll do this, since all treatments will take place 90 miles away. Plus I'm feeling like I'm having to make big decisions in a hurry--which surgeon to choose? I have to wait 2 weeks to see her; what if I don't like her? Wait another two or three weeks to see someone else? My radiologist, who is wonderful, said we ought to try to get the surgery done within 8 weeks of DX...so the clock is ticking! Do I even have time for a second opinion? And I have the added worry of a once-a-year concert in which I perform on Dec.1. I know my health comes first, but it would break my heart to have to cancel. Will my surgeon understand and work with me? I'm sure I'll be using this resource a lot--thankful to have all this accumulated wisdom and experience to draw on!

Moderators

milolucymom, we welcome you warmly to our community. We completely understand how overwhelming it is early on. A few thoughts... could you possibly arrange to meet with two different surgeons/centers on the same day, if you are making that trek anyway? Is your radiologist making the suggestions on which surgeon to work with? Could you bring someone with you as a second set of ears? Do you have people who could help you post surgery where you live, since you live alone. If so, perhaps try to get that lined up. Typically treatment teams will try to work with you, and your schedule to the best of their ability. After surgery you will also have to wait 3-7 days to get the test results back. Here are a few links that may be helpful:

What to Expect With Any Surgery , Questions to ask your surgeon, Waiting for Results From Surgery

Please keep us posted.

naalehunet

Aloha - first Milolucymom, it sounds like we have found a good thread to follow. It is a group who are taking charge of their treatment and aim for control - as best can be done given the step-by-step nature of bc.

I accidentally ended up here today because I am seeking advice on how to deal w/pain from the drainage tubes from my Oct 10 BMX, and was drawn in to reading the whole thread because everyone sounds like me! Also, my oxycodone is kicking in so I have the pain temporarily managed and can share some thoughts.

For the opposite point of view on handling bc, I would point to a medical receptionist who I knew had dealt w/bc who told me; "Two days after dx, I had my port installed. I just did what the doctors told me to do."

Then and there I thought - "Boy, this isn't me." I am an RN and a researcher and a pro se environmental litigant and I question EVERYTHING! I think I fit right in here!

Being in no pain, let me share my good news - tho I am trying to just have "news" - and not judge "good" v "bad" news. I finally got my BMX for Lobular Ca on 10/10, like Eigna, and my sentinel and other L nodes appeared normal. I am not having any reconstruction - I decided to do the least difficult treatments when possible. I am 73 yo and both my husband and I agree my breasts are better off than causing me more troubles when I am older.

My advice is to make your plans and just stick with your decisions. I have had terrific doctors and an amazing surgeon who I knew was caring and would make sure to talk to my husband after surgery (because he had done my husband's hernia and Dr. Pierce talked w/me after that surgery.) That single thing - that Joe would be taken care of - meant peace of mind for me, so get peace of mind thru whatever rings your bell! So be decisive and ask for what you want! My basic advice.

My bad news is the usual waiting til Oct. 25 for pathology results and next steps. W/Lobular Carcinoma the regular "Ductile" gene tests aren't predictive and the LobSig gene test to determine if chemo will help is avail in NZ and Australia - not here to the best of my research knowledge. Anyhow, I got the research article off BCO and at least my med team will know about LogSig.

To Eigna who shared my date of surgery - Hope your surgery worked great and that we now are free of cancer! But, as I say, I am trying to keep my optimistic nature under control and just be steeled to deal with the hand I have been dealt.

To DMHGF - you are not alone in traveling this journey! I guess my greatest good fortune is in being a Baha'i and being able to cling to the prayer that starts: "Rely upon God. Trust in Him..." just praying and knowing many many others are praying for me kept me cheerful and hopeful before and after my surgery. It has not been hard for me to have a good attitude on oxycodone - feeling no pain as they say - but having a strong Faith has really been my immense advantage over fear!

Finally - to all those who create and maintain BCO - thanks. You are now my Amazon Smile organization so you will get a few dollars from my household spending - maybe by mentioning it, more will be inspired to list you, too!

Now I will see if an ice pack will help with drainage tube pain?

Mymomsgirl

Milolucy you don't have to wait to line up a second opinion. I had all of my first and second opinions in about a 2 week window and had a month to wait for my surgery to line up all the doctors. I think my breast surgeon said it best "This is an emotional emergency not a medical emergency. " I'm tend to do research because that is how my brain works. I have friends who just trusted their gut and their doctors. You have to do what is good for you, this is your journey. Best of luck to you.

Ingerp

I've never bothered with a second opinion. I'd done enough research here on BCO about my dx that I knew what course of treatment would be recommended for me. My doctors are all just who I happened to get in the medical group that does my treatment. They're all good doctors, and of course there are some I like more personally than others but I'm not sure how important that is.