Recently diagnosed with IDC in right breast

Neta69

Hi,



This is my first post but I found this site a while ago and it's so helpful. Thanks everyone for sharing your experience, strenght and knowledge.



I am a 42 yr old mother of 2 living in Ontario, Canada and I was diagnosed about a month ago after a mammogram and ultrasound found a suspicious lump. I had a biopsy but as I have fibrocystic breasts and have had false alarms and a cyst removed in the past, I wasn't really worried until they called about the biopsy results. Then I completely fell apart. My Dr informed me that I had a 2.6x1.5 cm, Grade 2 IDC in my right breast and that it would be at least 2 weeks to see a surgeon, and then maybe another month to surgery. She seemed so casual about it but I was in a state of panic - completely terrified!



I couldn't deal with the wait so I arranged to have a MRI, chest Xray, bonescan and abdominal ultrasound done privately at a clinic in Quebec and considered having my lumpectomy done there. The tests came back clear and at this time I had contacted a clinic in Sweden (I'm originally from there) and booked my surgery there for July 3rd.



The surgery went well, nothing obvious in nodes during sentinel node dissection (the BS removed 4) but he said I had extremely dense and lumpy breasts and that that made the surgery difficult and so he ended up taking more than planned to try and get clear margins. Initially having done the surgery was a huge relief, but now I'm terrified again. I returned home to Canada a few days ago and saw the BS here. Because of vacations and whatnot my pathology wont be done for another week and by now I'm mentally exhausted. I have waited for the biopsy, waited for test results, waited for surgery an now Im waiting for the pathology report terrified of what it will say and what stage it will be. I'm a nervous, terrified wreck, I cant sleep and I keep falling to pieces, crying. I'm angry with myself for not being at all strong or brave like so many of you. I just wish I could start treatment and try to DO something about this and I wish I knew how to carry on with life in spite of the fear.



Sorry for ranting.

Maureen813

Hi Neta, welcome to the site. There are many great women/men on this site that will offer you unconditional support.  We've been in your shoes and right now is the worst part, waiting.  There are threads for the waiting you may want to check out.  Once you have a plan in place, you'll feel so much better.  You will do what you need to do.  If you get too stressed, ask the doc for help/medication/counseling.  Hope you find all the answers you are searching for.  Visit often.

Maureen

Shayne

Hi Neta - take a deep breath and let it out....... Its so normal, all the feelings you have.  I dont think i wouldve gotten thru this without a prescription for xanax.  Especially the initial stages.  The waiting is the hardest part.  It sounds like all the screenings and scans youve done have come up clear.....thats huge and a big relief.  Now just waiting to see if you have clean margins.  I know its hard, but try to distract yourself.  Maybe your family physician can prescribe something for anxiety.  Eating well and getting sleep are so important right now.  Chances are everything will come back as expected.  Your previous biopsy should tell you a lot and they should have discussed treatment plan for you as far as radiation or hormone therapy if you are ER/PR positive.  Check out the forums here for IDC.  Good luck and keep us posted on your results.  

Just wanted to add.....tho I may sound strong.....I have plenty of days, even still, where I dont feel strong at all!.  Those days are getting fewer, but they still come.  I just try to enjoy every moment with my family and friends and try not to let cancer fears get the best of me.   

Neta69

Thank you Maureen and Shayne! I think you are right about how it will feel better once I have a plan for treatment.



Shayne, I think I will see my family doctor for a prescription. As far as I understand I wont know if margins or nodes are clear, LVI, ER/PR, HER2 until pathology is back from the lab and it seems to be taking forever! My biopsy report only mentioned grade (2), nothing about ER/PR and it says that there was no evidence of LVI but on a tiny biopsy sample how could they be sure? Just noticed that it mentions both IDC, and DCIS. I'm also worried about the biopsy having spread things around. The little mark from the needle is still there so the BS didnt cut that out with the lump. It freaks me out.



Haven't really discussed treatment but the BS talked about radiation as a given. The Dr here in Ottawa won't do anything until he gets the pathology it seems. No referal to oncology, nothing.



Will try to focus simply on healing from surgery and to make the best of today. It looks like a gorgeous day out there.



Neta

Shayne

There isnt er/pr on my initial biopsy report either - but it is on an addendum (that i still havent gotten)....you can call your doc and ask.  Dont know why, but i think it takes longer to get it.  And of course, it will be on your final path report as well.  If you had a breast MRI with contrast dye, it will show if there is lymph involvement, but its not definitive.  The final path is the one that will tell all.  Its pretty common for docs to wait on treatment plan.  I had to wait 6 weeks for my surgery, so I did set up appts with radiologist, just to talk to them about my options.  I know in Canada its a little different.  Youll know soon......  enjoy the gorgeous day!

Mini1

Neta - I was diagnosed in late March and am down to my last 4 radiation treatments. I know the wait for the surgeon seems like an eternity but my surgeon told me that my cancer had been developing for 5-7 years. Like you, I'm sure, I wanted it out of me right now, but really a couple of weeks really wasn't going to make that much of a difference for me. I also had to wait to start radiation due to slow healing from surgery. That seemed interminal as well. I know it is hard, but just hang on. This is a marathon not a sprint. Use this time to recover, learn, and heal. There are lots of good resources out there. This site is one of them. I wish you well on your recovery. Holler if you need a good word.

Kelloggs

Neta - I was an emotional wreck...and it's OK to be!  I got a script for Ativan and once I got a treatment plan in place and started I felt much better.  You will, too.  We have all been there.  {{{HUGS)))

Mini1

I've cursed some of my meds, but the Xanax gets the love.

Neta69

Shayne, Mini1 and Kelloggs, thanks for the advice and I will get the prescription.



Mini1, I'm also healing slowly. It was all great to start and then I got a seroma and my incision opened a tiny bit and started leaking 3 days ago. BS took a look and said as long as it's not infected its fine, just needs to drain. I suppose you cant start treatment unril properly healed?

Cindyl

I don't know or know of anyone who has felt "strong" all the way through this process. Some of us are in full panic at the beginning.  Others, are seemingly calm, but I think most of them are in shock.  Things do get better though, you learn to cope and as you learn what you are dealing with ... well it does get better.  Never easy, but better.

Shayne

I got a seroma after surgery, and got internal rads 10days after......most of it drained when they put in the internal cath...  My BS saw me before that, post op, and told me to use warm compresses if it got uncomfortable.  I was thankful for the internal rads the it draining out from that, as it was on the verge of being uncomfortable......

Mini1

Net69 - my doc told me that if we started treatment my incision would not heal properly, if at all. The way I understand it is that the body normally sloughs off skin daily. The radiation keeps the skin from regenerating new skin. It's like the uber chemical peel, which I guess is why some people think their redness is a "burn," when in fact is it is just the very inner layers of skin. With unhealed skin already from your incision it will just get worse because not only it will not be able to generate the skin, you are more susceptible to infection.

I kept triple biotic ointment and a bandage on it at all times and that seemed to help it heal faster.

Maureen813

did the same thing, with the cream.  really helped speed the healing.

Neta69

Thanks everyone. Kept a heatpad on it yesterday and a little better today, not leaking as much. Reading your comments and just knowing I'm not alone going through this helps.

Mini1

Net69-Be careful with the heating pad. If you have any infection it can act like an incubator and encourage the growth of bad bacteria. Also, something I never thought of but was told by my OT is that my heating pad is on the no-no list for things that can affect lymphadema. It can't be anywhere near my incisions and/or arm. I love my heating pad both for my back and for plain old warmth in the winter (I am always freezing). :-(

Shayne

warm compresses.......is what my doc told me to use.......a lot safer than heating pad.  Hope it helps you!

Mini1

Shayne - I'll remember that. I was going to get one of those electric mattress covers this winter, but that's not going to happen now. :-( My one incision healed differently than the others. It seemed to take forever. Actually it was only about 3 weeks longer. The doctor said it was because of the location of my tumor and how deep it was was. One of the few times I've appreciated having less than ample ta-tas. :-) I can't imagine how long it would have taken if he'd had to go further in.

Right now I'm just waiting for those last two rad treatments. The only thing touching me right now is the creams and the aloe. Tuesday that blip you see on the horizon will me doing my happy dance!

Neta69

Ok thanks. Will leave heat pad alone and do warm comresses instead. Mini1, glad to hear your rad treatment is almost done

Onelife2012

Hi Neta69........I live in Alberta and was diagnosed the same as you. I have a mastectomy booked for Monday and I am also nervous.  Maybe we could be wrecks together.....you know a problem shared! 

This is a recurrance for me, I have been cancer free for 11 years. As you can imagine, I was not thrilled at having to go through this again but it is what it is. I must say I do feel better this time round because of having the experience before. I had a lumpectomy before and the cancer has come back on the same breast hence the mastectomy. It does help that I kind of know what to expect but it does not take away the fear.

If I can help you at all with questions I will.  Please feel free to send me a message.

Sending hugs x

Caryl 

SelenaWolf

Courage is, quite simply, being afraid, but still standing firm and facing danger.  I don't think that I will be speaking out-of-turn if I say that every one of us here, who has been diagnosed with breast cancer, didn't feel paralysed by fear at some point.  So, please, don't beat yourself up for being scared and worried.

Mini1

Amen, Selena.

Neta69

Caryl, so sorry to hear of your recurrence. Like you say it probably helps a little to have some sense of what will happen but it is frightening none the less. The uncertainty and waiting is awful. I had a lumpectomy myself but I actually looked forward to my surgery and felt a huge sense of relief when it was done. For about a week after surgery I slept well and felt quite hopeful. For me the fear and anxiety crept back as I waited for my test results and I was unlucky and got an infection in my insicion. After that I have been unable to sleep due to anxiety and havent had a good nights sleep in weeks. I was prescribed Ativan and Zopiclone short term but I'm trying not to take them every day. Breathing and relaxation only helps a little. Fighting the fear and coping is so hard when you are exhausted from lack of sleep. I'm waiting for my FISH test and Im nervous about that. Once I get it I will hopefully get to see the MO soon, but things are so slow! Everyone says it feels a little better once you have your plan for treatment and I hope that's true.

bearcub

Neta69- My doctor gave me adivan when I broke out in a nervous rash a few days after my diagnosis.  I took them occasionally those first 2 weeks, mostly when I was around others and wanted to seem like everything was great.  I still have at least half left and am saving them for days like your having today.   I am also recently diagnosed, had surgery July 12th and waiting for the first Onc visit on the 17th to see my treatment plan.  Hang in there!

Shayne

xanax was my best friend during those times.........i couldnt have made it as well as i did without it.  Youll need your sleep more than ever now......

Mini1

Yes, Xanax is one medication that is my friend. I can barely sleep with it. I can't imagine tyring to without it. And Ambien is not the same. Xanax I can take and be myself when I wake up. No sleep eating or driving or other SE's. Also I found tht with Ambien or Lunseta that I would sle great for 2-4 hours and then I was awake for the rest of the night. My advice about Xanax is to take it about an hour before you plan on going to bed. I found this to be more effective by accident and have have done it ever since.

HAPPY FRIDAY!

Shayne

I also took it before surgery (with my docs permission) and before a couple biopsies......

Neta69

Good day so far today! Slept almost 7 hours (with some ativan to help) woke up to a phone call that my FISH test was done (finally) and that it was HER2- negative. Now I can finally feel certain I get to see the MO on the 21st and soon be on my way with treatment! Oh, what a relief it will be to get a treatment plan. To mark the occasion I went and cut my long(ish) hair off to a short bob. Have been meaning to for ages and I figure in case I will be losing my hair, losing short hair wont be as bad.



Bearcub, I see you are from BC. My kids have been out in Vancouver with their grandparents this week. I'm in Ontario. I had my surgery the 3rd of July, and MO 21st, RO 27th. Just praying the waitimes here in Ottawa aren't as bad as Ive heard.



By the way, I agree about the Ambien/Lorazepam. I think it actually makes me more anxious the next day but of course everyone is different. Ativan and a relaxation tape worked yesterday.

bearcub

 The Lorazepam works for me,  takes just enough of the edge off.  I hope all goes well with your appointments. Your kids probably were in Vancouver for the big storm a few days ago.

My hair is almost at my waist, I have decided to go to my first chemo with it long and after I will come home and put it in a tight braid and cut it off!!!.then have a good cry...I think it would be to emotional to go to the hairdressers.  I love having my long hair...then I will clean it up as best I can and wear a scarf...and wait for the inevidable.

cheers!

Mini1

bearcub - have you considered donating it to Locks of Love. Would be ironic, but it may make it easier knowing it's going to help someone in your shoes. Just  a thought. :-)

SpecialK

For those with hair long enough to create 8" ponytails you can have a hairpiece made by http://www.hatswithhair.com/ out of your own hair.  I did this and it was the best money I spent.  I sent in the ponytails and got back a hairpiece with a soft cap (hair starts just above the ears) that was much more comfortable than my wig.  I did have to wear a hat with it, I bought a couple of fedora style hats and it also works with a ball cap.  I liked that it was my hair and I looked like myself when I wore it - just had a hat on!  Many insurance companies will pay for a wig or hairpiece if you get a prescription from your oncologist for a "cranial prosthesis" and submit a claim form with the prescription and the receipt.

bearcub

mini1,    I did want to do that but my hair is white/gray and they don't take gray hair...its too bad, because I have lots of it.