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Newly diagnosed IDC, 62 years old and terrified

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Hi

I am in just total despair and disbelief. I found a lump in my left breast, had it checked out, and found out its Ductal Cancer, HER2+ as well as ES+ and PR+. The treatment plan is sentinel node dye injection, next Sunday, then 12/3 lumpectomy, followed by chemo, radiation , and a year of herceptin and five years of some hormone receptor drug.

I am just terrified of it all, but specifically, at this moment, about the dye injection. I have seen various comments on how painful it is, and varying degrees of if it can or cannot be numbed first.

Then Im terrified of surgery, and anesthesia. I had a very bad wake up experience 30 years ago, and ever since have been paralyzed with fear about any surgery. To add to my fears , I am also overweight, and worried how that will play into all of this.

Then of course the fact that I was not lucky enough to escape chemo has me just freaked out.

I have not stopped crying for about a week and have no idea how Im going to get thru this next crap hole of a year.

Any input or help or encouragement, or info anyone can offer would be greatly appreciated.

Im just so sad, and scared and worried... and those feelings are so not like me, but I feel my life as I knew it is over, and a whole new sad scary life has begun.

Thanks for listening
Diane

New_Path
Posts: 10
Joined: Nov 2012

I am as scared as you are. I was just diagnosed last Wed. Will have surgery on Dec 17. So fast..scary and sad. So far I have been numb, no tears, no feelings at all. Joined this site yesterday after spending a few hours reading the posts.

Please stay strong.

Kelly513's picture
Kelly513
Posts: 13
Joined: Nov 2012

New path stay strong and positive girl! Being scared is normal I was numb in the beginning every day is a new feeling! Looks like we came to the right site I joined a few days ago:)

New_Path
Posts: 10
Joined: Nov 2012

I am as scared as you are. I was just diagnosed last Wed. Will have surgery on Dec 17. So fast..scary and sad. So far I have been numb, no tears, no feelings at all. Joined this site yesterday after spending a few hours reading the posts. I am also 62 years old.

Please stay strong.

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Everyone keeps telling me to stay strong. I have no idea what that even means. I'm just falling apart :-(

I have never in my 62 years felt anything close to this level of fear and sadness.

Ugh

All the best to you newpath (what is your first name), you seem to have better coping skills than i do

VickiSam's picture
VickiSam
Posts: 8507
Joined: Aug 2009

Sorry that the two of you have to come on the journey that none of us wanted to be on. Allow yourself time to absorb the information that is being given to you; take someone with you if possible to hear when you can't possibly absorb it all.

The waiting is really one of the hardest part of this journey for me. Once you have a treatment plan in place, things will start to go a lot faster. So please .. please make sure you take someone, or a tape recorder with you when you are speaking with your Oncologist -- information is lost, or misconstrued. Ask questions and do not leave until you are comfortable with what is YOUR' body.

We on this board know about the waiting and the myriad of emotions one goes through -- so let us wait with you. Post whenever you feel the urge and we'll keep you company. I think at this point it is easy to get overwhelmed with all the new things happening in your life. It might help to take things one step and one day (sometimes even one hour) at a time. Get your results, talk to your doctor, give yourself some time to digest, etc. We are here to support you.

If you are hesitant about anything, get a second opinion as soon as possible. I did not feel confident with my general surgeon. so I located a Breast Cancer Specialist and knew immediately he was the Doctor for me. I did get a second opinion when it came to chemotherapy, as well..

Anyway, you are both well on your way, take a deep breathe, and scream! We will be there for you every step of the way.

Strength, Courage and HOPE for a Cure.

Vicki Sam

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Vicki

I live in Orlando fl, where i guess I'm lucky to have the first and only sister facility of the well respected tx based MD Anderson cancer center. So i think I'm in good hands.

That said, I'm still in sheer terror over it all

My husband has been good so far, going to appointments with me trying and to be supportive.

Thanks for your caring words

Diane

New_Path
Posts: 10
Joined: Nov 2012

Thank you, your post means a lot!

New_Path
Posts: 10
Joined: Nov 2012

Stay strong to me is to focus in the future. In this case look at what I can do to help myself to improve some bad times. In that vein, today I will have my hair cut and color then tonight my plans are to research what vitamins and foods to eat now to maybe strength my body to go through the next few months. With this philosophy I have beaten high blood pressure and the beginnings of diabetes. Did not need high blood pressure medicine after a year of start taking it and reduced my sugar count dramatically.

I know this is not going to be beaten by changing a diet and exercising. Hopefully I can keep the same mind set as this journey begins. Ugh...ugh..ugh a thousand times.

My name is Ana Maria and I am in Georgia. I trust my doctor/surgeon, she did a lumpectomy 9 years ago. Recuperated immediately.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

at least all the time. Let's be honest, breast cancer is really scary. But it is something that you can get through. I was diagnosed at the age of 42 last July. It was a small tumor and I went in for the lumpectomy and sentinel node biopsy (the dye) at the same time. I was under anesthesia for this. I did end up having 3 positive nodes and a full axillary node dissection,which probably hurt more than the sentinel node biopsy would. Honestly, I recovered from this quickly. There was some pain, but not too long lasting. I did make sure to stretch and eventually started lifting 2 pound weights to promote mobility, though.

I began chemo on August 15 and finished this Weds. before Thanksgiving (just a couple of days ago). It hasn't been fun, but it was completely do-able. I have been tired, but for each cycle (2 weeks for each cycle), I was almost back to normal by the end except for the level of physical activity I'm used to, which is high. I do have to have another surgery--bilateral masectomy because they found DCIS on all margins of the lumpectomy. I found great surgeons and am ready to get this over with and focus on survivorship. I was really scared about this until I found surgeons I liked and trusted. I think that's really important--find docs you trust and can ask questions to. This is scary stuff, but life does bring scary stuff from time to time, and you can do this. I did, and even in the midst of all the treatment, you'll still find yourself living life (I went on field trips with my kids, taught classes online, cooked, took etc.) So, it's okay to feel scared right now, but arm yourself with information and realize that you can do this. Keep asking questions and good luck.

Unhappy
Posts: 88
Joined: Dec 2012

I tryed and throught I was but I would wake up in the middle of the night crying trying not to but it has took me almost 2 month to get over that and I still sometime take crying spell I try not let my husband see me but sometime it just happen.I begining to think that is a normal responce to breast cancer .Fear and sadness seem to go along with it .When I started to talk about it it is getting better so keep talking .

Sdawells
Posts: 23
Joined: Nov 2012

I am so sorry to hear of your diagnosis. Sadly so many of us are in the same position. I know it is hard not to think the worst, but remember that positive thoughts go a long way. As far as the dye injection goes I have to say that mine was almost painless. I have never been "needle shy" and really had not researched the procedure ahead of time. I have heard others have not been so lucky as far as the pain but I wish for you an easy procedure like mine was. Try to keep positive and remember that so many people, some you don't even know are praying for you and sending well wishes your way. When you need to cry, cry, when you need to be angry, be angry, but don't forget to smile and laugh. Best thoughts to you

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thank you

I hope mine goes as well as yours. The surgeon did the biopsy in his office and while not fun, it was not unbearable

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

However, tho you can't believe me yet, you will resume breathing, and your life will settle down. We understand the feeling of your head spinning out of control, and that in particular, when the lights go out at night, the brain turns on.

That said, Breast Cancer is more treatable than ever, although getting through treatment is not easy.

Regarding fears about surgery and anesthesia - I was so terrified that when I had to have throat surgery for removal of a parathyroid gland, I chose to do it under local. Everyone thought I was crazy. A few years later, my hysterectomy was done under a spinal. I've subsequently had 2 huge abdominal surgeries relating to my appendix cancer that were done under general, and having discussed my concerns, I found that it was not the nightmare I had expected.

I just had a lumpectomy (tho no lymph nodes were removed), and the dr used sedation and local, like you'd have for a colonoscopy. I was also very clear with the anesthesiologist about my fears and concerns, and he took those into account in how he handled my case. (A fear of vomiting made him add extra anti-nauseants; a concern about particular drugs had him avoid them.)

I don't know about pain with the sentinel node dye injection - I didn't have that, as my lumpectomy was diagnostic (needle core biopsies couldn't reach the masses.) I had a benign outcome.

Somehow, you will get through this. We do. We learn of strengths that we didn't know we had. The spinning you are in right now will slow down, and you will resume living. Life may be changing, but that happens anyway. We've just had the addition of the major slam of cancer.

Believe it or not, you will handle things well. I got through my year of hell (see http://csn.cancer.org/node/188600.) You will get through yours.

Alice

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks for your kind words and helpful info

I meet the anesthesiologist Friday, I'll be sure to let him know my fears

2Floridiansisters's picture
2Floridiansisters
Posts: 362
Joined: May 2010

It's okay to be scared and to cry, we've all been there. It really does get better with every day that passes. I had that sentinel node dye injection, I had the wire placement, I've done chemo and radiation, I never felt one single bit of pain when I had to have that dye in me. It took about 40 minutes and then I was sent home, the following morning I had that wire put in place, never felt anything. Maybe I was just lucky or perhaps the doctor is good at what he does, I just want to let you know sometimes some of us never feel nothing. I think you'll be fine. Like you I was over weight at the time, since then I've lost all most 40 pounds, I've been determined to just take better care of myself. I wish you well.

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thank you, that was very encouraging. Where in Florida are you? What is the wire? I was not told anything about that, just the dye and the scans following.

survivorbc09
Posts: 4378
Joined: Jun 2009

Hi DianeHelen! I had a lumpectomy and also had the wire placed in me prior to the surgery so the surgeon would know where the lump was exactly. It was ultrasound guided for placement. It didn't hurt as they numbed me first and all I felt was one tiny prick of a needle. I don't know if everyone has the wire placed, so, I don't know if you'll have one or not. You should have been told if you are going to. I had no chemo, but, had radiation treatments. Why did they say you need chemo already if they haven't checked your lymph nodes? Wishing you good luck!

Hugs, Jan

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Oh ok. Well they know exactly where the lump is, i found it, is close to the surface do maybe i don't need that

They said i needed chemo because the tumor size is t2 and is her2+ es+ and pr+,,

Thanks for letting me know

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Wishing you good luck!

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Also, how was your experience with chemo etc.

PatFried
Posts: 45
Joined: Oct 2012

I have just recently gone through all that faces you. I too was terrified, scared, mad, and every emotion you can think of. I have never prayed so much and so hard my whole life. I had my lumpectomy on October 19. I will have my port put in on Tuesday and start chemo soon after in December. (Merry Christmas right?!?) I literally took One step at a time. I tried not to think past the next test or procedure.
I have read and read and read the posts on this web site. It is a wonderful source of information but sometimes you just need to stop reading because it becomes overwhelming. When I had the dye injection I felt very little. It was not painful at all for me. I also thought my life would never be the same. It won't be the same but I have to remain as positive as I can.

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Pat, so you are just a bit ahead of me on this crappy journey. I know everyone is different, but I'll be following you r progress
All the best to you

Diane

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Wierd forum, it duplicates posts. No way to delete them

JanPat
Posts: 25
Joined: Nov 2012

There is no doubt that you are facing one of the most frightening times of you life, if not the most frightening. I am not going to sugar coat it and tell you that it is no big deal because there are probably going to be some days ahead that are rough. However, you will be doing yourself a favor if you find simple little ways to help you cope. I was diagnosed with Stage IIB last December and had a lumpectomy on December 16th followed by chemo and radiation. My daughter made one of the glasses that you can place your own picture in with pictures of my grandsons and I took that glass with me to every chemo treatment. It was hard not to find a smile when I could see their beautiful little faces. I also bought a pair of fun socks for each one of my treatments. They brought a smile to the staff's face as well as mine. Most importantly, I made sure I had someone with me that loved me at every treatment. It's okay to be afraid and most definitely okay to cry but you can do this and there are a whole bunch of us that will be praying for you and cheering you on!

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thank you janpat.

And how are you doing now?

JanPat
Posts: 25
Joined: Nov 2012

Physically I am doing well. Still get tired easier than before but nothing that stops me from enjoying what matters to me. I also deal with residual effects of chemo with mild neuropathy of my feet but again, I do not let it keep me from enjoying life. My hair started coming back in within a month of my last chemo treatment and within three months I was able to shed my hats .... Yay!!! I am now taking Arimidex and have been fortunate not to have to deal with any of the side effects.

Emotionally, there are still times that I am overwhelmed with everything that happened especially when I meet someone that was recently diagnosed. It was also a blow when one month after my last radiation treatment my father was diagnosed with terminal pancreatic cancer. Four weeks ago today he went to meet Jesus and while I am so thankful that he no longer has to suffer, my heart is hurting especially having to face Christmas without him. I continue to hold tightly to the hand of God!

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Glad you are doing mostly ok.

So very sorry about your dad :-(

I lost my MIL to pancreatic, and my mom (40+ year 2 pack a day smoker) to lung cancer

I'm so scared and worried, but appreciate the support here

hestko76
Posts: 2
Joined: Nov 2012

Hi diane,
This is my first post on this board. You might was to join the HER2 forum. It is specifically for us sisters in pink who are in the 20% of breast cancers that are HER2+++. I am almost done with herceptin treatments. My timeline went something like this:

diagnosed on Halloween at the age of 59 - this was last year... I'm now 60
Lumectomy Surgery on 11-18-11 in Tucson, AZ at the NCI
TCH - 6 rounds of chemo ending in APril 2012 (taxetere, carboplatin, herceptin)
Herceptin continued every 3 weeks for 17 times. Actually, my last herceptin treatment in December 10, 2012.

My tumor was 7mm, no lymph nodes were found cancerous, and I'm ER-, PR-. I, too, had to have chemo because of the HER2 ++. You will find a wealth of knowledge and sisters in HER2 pink at http://her2support.org

Good luck and prayers sent your way ..... Let me know if I can help.
Helen

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Helen.,

Since our situations are so similar (ya with the caveat that every one is different), can you share some of what you experienced? How did you find your tumor, via regular mammo, or you found it yourself? Did you have that dye injection , how was it, pain and everything wize? How was the surgery? What was your physical condition before surgery? In shape? Not in shape? Normal weight, thin, or overweight? And how was the experience of chemo? You seem to write about it in very effortless way, which Im sure it was not. Also what do you mean by HER2+++?

And most important HOW are you feeling now?

Thanks for your kindess and taking the time to post and talk to me.

Diane

hestko76
Posts: 2
Joined: Nov 2012

Hi Diane,
This definition tells you what HER2 is. You will see that this type of cancer IS NOT inherited, so gene testing for others in your family is not warranted.

HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation and the elevated levels of HER2 that it causes can occur in many types of cancer — not only breast cancer. This is a gene mutation that occurs only in the cancer cells and is not a type of mutation that you can inherit from a parent.

My tumor was found with a mamogram. You can't feel a tumor until it is 1 cm, and you can't see it on a mamogram until it is 5 mm. Sometimes, with large breasts, it can't be felt at 1 cm, either.

Yes, I did have the dye injected. It was VERY painful... probably the most pain I had during this year of treatment. Inserting the wire through my nipple was not painful. I started walking at age 50, because of a bone density test. I did no other exercise, but teach school! I've always been a few pounds over weight. I did gain 12 pounds during chemo. But, I'm counting calories again, and I've lost 18 pounds! Yea! I am retired now, but do substitute teaching and give piano lessons.

Chemo wasn't a piece of cake, but very doable. I didn't feel too bad until days 4 and 5 after chemo. Very very tired..... There are meds to handle the other stuff: nausa, diareha, constipation. I never lost my appetite. My hair fell out between my lst and 2nd chemo. That is very typical.

My surgery was long.... 5 1/2 hours! My surgeon tested the margins while I was still "under", and decided to get clearer margins then. My recovery from the lumpectomy was fine.

I forgot to say in my earlier post.... I did get 33 radiation treatments which began 1 month after chemo. I did burn and peel, but light skinned women do burn worse than others.

I feel good now, but still need more sleep than I used to get. My hair grew in very curly.... always had straight hair.... but at least it is hair!

I hope this helps!
Helen

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

I know what HER2 is, I was asking about +++ that was put after it. Is there a difference in HER2+ and HER2+++

Kelly513's picture
Kelly513
Posts: 13
Joined: Nov 2012

So sorry you are going thru this I too have IDC had right mast on Nov 7th. I can totally relate to how you are feeling I use to be such a carefree girl without any worries in the world now my life seems consumed with fear sadness and Doctor apps. I had the blue dye for node detection was not numbed! alone for two hrs without my husband or family but I remained as brave as possible and to tell you the truth it wasn't so bad so please don't make yourself crazy scared over it. It sure does suck but it's was very quick and watching the nodes light up on the computer was very interesting. Have a tattoo and that was way more painful lol:) different for everyone I am sure! Good luck you came to the right place everyone here is wonderful and full of knowledge. I know it is scary and difficult but you have to remember to take deep breaths and try to stay calm and positive. Crying is so normal it is ok to feel your feelings I cried my eyes raw this past week!! I feel like breast cancer has consumed me and that I am not normal but believe me we are all normal my husband keeps reminding me lol:)

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Kelly

Why were you alone for two hours? Did you have the option to be numb or just did not know if it was available?

How are you now post surgery, and what is next for you?

Kelly513's picture
Kelly513
Posts: 13
Joined: Nov 2012

Not sure if it was available assume they would have told me if it was but maybe not:( my family was not allowed to go with me because it was in the nuclear medicine ward of the hospital I made small talk with everyone there and they held my hand and were super nice. They take all sorts of pictures after the dye goes in, Like I said the doctor was really quick with the needle so that was great!

I am pretty great post op I started arm exercises right away by my doctors recommendation the only downside is somedays my expander feels like a bowling ball on my chest lol:) I head to my oncologist tomorrow to see if the rest of my results are in waiting on Her2 and fish test. I am Er+ Pr- all my nodes were clear except one cell on one node. Not sure if I am headed for chemo or chemo and hormone therapy wow I can't believe how educated I sound about all this i didn't know squat about breast cancer three months ago lol!! Had two types of cancer in my breast one being invasive aggressive that didn't show on mammo doctor thinks I should consider left mastectomy because of this reason. So torn now because I feel like I kept the left one for a reason now I doubt my decision every day, I know I just need to dig deep and make myself at peace with a decision real soon!! So after my results I plan on doing just that!

Good luck with everything try really hard to stay positive and try to get some sleep sweet dreams

Venus2012
Posts: 4
Joined: Nov 2012

My heart goes out to you. It is very scary to go through and you will have many moments of emotions coming up. You are in a great facility. My girlfriend was diagnosed last December and did her treatments at MD Anderson Orlando. I was diagnosed in April this year in Texas and fortunate to have a great crew at Medical City Dallas.
Write all your questions down in a journal so when you see your doctors you can ask questions that you think of when you are home. Your husband is wonderful and supportive, but he is also having his own emotions about this and mostly his concern for you. BE STRONG. You are taking care of your body now and will get it back on the right track. You are going through this to enjoy a longer healthier life with your husband. YOU ARE STRONG.
Your SCARY LIFE is over, you are going to get healthy again.
Thinking of you my dear.

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Wow both your gf AND you stricken with this? That is so NOT fair, but then NONE of this is.

I know Im in a good facility, but my scary life is far from over, its really just beginning. You are way stronger than I am. I hope you both are doing well.

Thanks for caring

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Hi DianeHelen! Hearing those 3 awful words and then having to go thru everything that we have to in order to save our lives is scary and is also not fair. But, you've got so many pink sisters that have been thru it and can hopefully help to answer your questions and give you support. This site, these women are amazing!

I am sending you lots of hugs and lots of support!

Leeza

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Leeza

I have seen some good info here, but yanno, sometimes I read stuff and it makes me more scared. I dont know whether to read or not. Ughh But I do agree there are some really great people here. Most seem much braver and stronger than I am in dealing with this.

Thanks for caring

kacee999
Posts: 110
Joined: Oct 2012

is what gets you. So when I was diagnosed I got on the net and started reading, reading, reading, reading, reading and I mean a LOT! I Learned the jargon of the cancer world, I read about the various types of cancer, the stages, the treatments, what to expect. I was Stage 1, IDC, DCIS (in situ), microscopic met to the sentinel node (but no others). I had a bi-lateral mastegtomy (I said TAKE IT ALL!!!!!), 6 rounds of TAC chemo - Taxotere, Adriamycin, Cytoxan, followed by 25 sessions of rads, follwed by (now) 5 years of Aromatase Inhibitor (Arimidex). I made it a point to be as versed as possible in all facets of my treatment. Being forewarned takes 90% of the fear away. And when you go to your doctor, take a cell phone and RECORD all your initial visits. You'll be getting WAY too much info to digest at once, even with a second person there to help. You'll find that you will "adjust" (if you need help and can't seem to get under control, demand some anti-anxiety meds!) to the "new normal" for the period of treatment and after. It is all doable. (By the way, I am 61)

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Wow you are just so strong and even clinical about all. You obviously handled it way better than i am. I envy that you have those qualities.

I start reading stuff and just fall apart into tears and have to stop reading.

I'm just a mess

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

We all went into this wondering how we'd survive it, hearing tales of what others went through that made us shake in our boots, and feel totally inadequate.

Somehow, we do what we have to do. It's okay to cry. It's okay to be scared. Your drs have seen it all - some will be more comforting than others.

One day at a time, one step at a time. I think that the anticipation is the worst part.

Sending giant hugs,
Alice

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