B/C in your 40's, newly diagnosed

jrow7

Hi BebeZF,

Sorry I kind of fell off the site here...I couldn't recall where I had posted, hahaha.

Surgery went well (partial mx of left, reduction/lift of right), one node was positive so I started chemo in April. 4 rounds of AC. About to start Taxol + Herceptin on 6/7. Chemo hasn't been a walk in the park but hasn't been what you see in the movies either. I've been trying to work as much as possible - nervous to see how weekly chemo will treat me (I will have 12 rounds). Then I have to have more imaging done because the margins on the DCIS were not "clear"...ugh. Not a happy camper about that! So if DCIS is still there then I'll need to discuss more surgery with the BS and I think I might just say BMX at that time (though I don't want drains...oh my gosh those hurt when they came out!). I'll cross that bridge when I get there.

I still need to meet with a RO to discuss radiation. Then after all that, a hormone med as the DCIS is ER+. I'm also hoping to add Perjeta to my arsenal, that's a big discussion with MO - don't know why she's not 100% for adding it...she keeps saying she wants to wait and see what the latest ASCO meeting says (I believe that is to take place June 2-6th).

I'm doing as best as I can...though for the past week or so I feel like I'm more sad than I have been...journey is just a wee tough right now but it'll pass... in time... Thanks for thinking of me...I hope all is well with you all.

Warm regards ~ Jenn

Leatherette

Thanks for the replies. MRI results found something in the right breast as well. Thinking positive- glad it was found, and if I have to have a double mastectomy, it will be easier to match when reconstructing? I keep getting worse news, and flipping the script is working. Glad I'm a psychologist. Hopefully I am not just deluding myself. It can be a fine line

Lovinggrouches

I'm so scared! Thought things would be better by now. Didn't get any answers with first post radiation mammogram, so hoping all is well and nothing changed. My nerves have been so bad for weeks. Diagnosed last year at 41. Had three surgeries and radiation. Scared of every lump I feel. Guess this will be my way of life now

sunnyjay

I've been following the posts here for a few weeks and feel better knowing that we're not alone in this. I am 45 and was diagnosed in March with IDC & DCIS. When I was 14 yrs old I had a cystectomy which left a prominent scar. Each time I had a physical the scar was noted. A cyst in the same area appeared a few years ago. I had mammograms and ultrasounds over the last 5 years to monitor the cyst which appeared to be fluid-filled. I was supposed to get it aspirated last year but was busy planning a wedding.

At my last mammogram in March I was called back to re-check the left breast, and an ultrasound was done. I thought it was the cyst they were monitoring but there appeared to be a spiculated mass behind the cyst. So I had an ultrasound guided biopsy done and the IDC mass measured 2 cm. A lumpectomy was recommended. But to make sure that that was all, I was referred to have an MRI which revealed a deeper mass of DCIS about 2 cm as well. So a UMX was recommended. A lumpectomy could've been done, but my BS was concerned about getting clear margins.

So here I am recovering from 2 surgeries. I had my initial surgery for UMX with SNB and reconstruction on the 17th. But the path was started on the 18th and found some spread to one of the nodes. So I had to stay in the hospital 2 more nights for axillary node surgery.

The rest of the nodes were clear so that's good news. My surgeon referred my case to the tumor board at my clinic to recommend treatment, and it was unanimous that I would need some form of chemo and possibly radiation after.

I'm so glad I found this community. No one in my family has gone through this nor anyone close to me, so this is new for all of us.

TSmith76

Glad I found this site...Newly diagnosed and still so much up in the air. Won't really know the actual specifics of my cancer diagnoses until after surgery. Consult is scheduled for June 13th and still waiting on genetic testing results to come back. Found my cancer completely due to my PA routinely asking me if I had scheduled my first mammogram since I turned 40 in October 2016. I put it off until she took the ball out of my court and made the appointment. Glad she did! Screening mammo turned into diagnostic mammo and ultrasound, which turned into biopsy...followed by MRI. All of this in a span of about 2 1/2 weeks. And here we are...

MsLin

TSmith - I know your frustration of everything being up in the air. I had the same situation. No one could tell me what the next step was until I had surgery. Then all of a sudden things were GO! I'm not sure if mine would have shown up on a routine mammo or not. I didn't have one at 40 and my gyn didn't feel anything in June last. I eventually felt something last fall and saw the doctor in January. Turns out it was a 5cm tumor

Autum1031

Just diagnosed today. I am 43. Had my annual mammogram done in early May, got a letter stating I needed additional tests due to a suspicious mass...then a biopsy yesterday. Got the call today. I don't have much info yet, as I don't see a surgeon until Monday, but I know I have both IDC and DICS. The mass is small - about .6 cm, barely detectable on mammo & US. I didn't feel a thing. I don't know what stage I am yet (I know the DICS is obviously stage 0, but I don't know about the IDC), but I do know that my Histologic Grade is 3, and it's both estrogen and progesterone negative. The biopsy of my lymph node was negative, and it doesn't appear to have spread beyond my breast.

I have so many questions--I don't even know where to start. How did you all decide which doctor to see? I just blindly made an appointment with the breast surgeon recommended by my OB GYN, but it's not a cancer center, or a hospital that specializes in cancer treatment....I'm about 60 miles from Yale/New Haven, maybe I should go there, instead. I don't even know where to begin.

EastcoastTS

Hello, everyone. Sorry the newbies are here.

I posted a bit ago on this list -- and feel like an experienced BC hack now. All I can say is that the more information you receive, the more steps you take, the better this gets -- or at least it seemed (seems) to me. The worst part is first diagnosis when you feel you have to learn everything AND make major decisions in one day. Take a breath. It can be done. Help and support are here. We've all, unfortunately, been there.

Autumn: You can go local for first opinion, sure, but I would travel to a major cancer center if you can make this work. You can call and most will start scheduling you on the phone. Numbers are easily found online. I was diagnosed locally but went to MD Anderson for treatment. Then back to local now post. I was able to call and get appts with diagnosis -- and they make it easy to get your records. Same with Johns Hopkins, etc., when I called them. I considered these, initially, my 2nd opinions. You want someone who handles breast cancer every/every/every day. You have time to make these appts and make sure you're getting the best, most personalized, treatment. Although it will feel like you're running a mad race.

Good luck to all. HUGS!

christinarose

Another person with their future up in the air checking in! I'm 41 years old. I found a lump in early March, had mammo and ultrasound, was referred for MRI, but denied by insurance. Sent for core needle biopsy instead, which came back benign. For five minutes I thought I was cancer free and I called my husband, close friends and mom and let them know right away. THEN they called back and said the radiologist disagreed with pathology so due to the discordance I was to have an excisional biopsy of the lump. Before the biopsy they were finally able to push through the MRI, which revealed that the original lump was in fact nothing, but there was a whole other spot that was very suspicious. I was sent for a core needle biopsy of that spot which came back as IDC with some DCS.
Diagnosis was May 15, Lumpectomy and sentinel lymph node removal was May 23rd, and my follow up with the surgeon was yesterday, May 30th. I expected to finally be told if I'd be needing chemo or could skip to radiation but instead they told me the tumor was bigger than they thought (1.5cm instead of .8cm) and they were sending it off for genetic testing to decide if I'll need chemo or not. The results aren't expected to be back for two weeks. Ugh!!! So tired of waiting. Two weeks from now is when I should be starting radiation if I don't need the chemo, or starting chemo if I need it, so i'm probably going to find out one day and start whatever treatment it is next the next day. Not an easy thing to plan for, especially since I'm scheduled to be back to work in about two weeks as well.
I've been reading everyone's posts all day, and am so sorry to all of you going through this. I'm very appreciative to be able to read similar experiences and especially those who are much further ahead the path than me. I know stage 1 is a lucky place to be so I have been keeping positive for the most part, it's just the waiting that drives me crazy! Grrrrr

toughcookie_21

Not knowing is the hardest part! I did find out that the tumor is ER+/PR+, but I am still waiting on the FISH test as my HER2 test came back equivocal. I also opted to have the genetic testing done as I don't have a complete family medical history. I have an MRI tonight and then back to the surgeon on June 5, hopefully to schedule surgery.

I just don't know what to do about work- I told my boss and then the HR person said I shouldn't have told anyone my diagnosis because "It puts people in uncomfortable positions" to have that information. That sort of pissed me off. I work for a super competitive, fast paced medical device company and just started a new position in April. My boss wants to know what my plan is, but I don't even know what that is yet.

We still haven't told our children- they are 8 and 10 and everyone they know who as had cancer died. Granted, their grandmother was 78 years old and my son's friend's mom also had MS and was very ill for a long time.

There's just so much up in the air! I hate it.

msphil

I too was diagnosed at 42 planning my 2nd marriage when found the lump But Praise God with Positive thinking saying often(i will beat this cancer, it has to leave my body) Hope lots of it. Praise God I am now a 23yr Survivor. God Bless Us All.msphil idc stage 3 0\3nodes Lmast with 3 Mon chemo before n after got married then rats 7wks 5 days a w/o then tamoxifen for 5 yrs.

Phoenixmom

I was diagnosed 5/31 with a 5cm tumor. So far according to the mammogram my lymph nodes are clear, and I will be doing a MRI and getting genetic testing. There is still a lot I don't know. I have a few "cancer reveals" I still have to do. So far I'm stage 1B and my mother had BC at age 59.

Moderators

Phoenixmom, sorry you are joining us, but glad you found our community. Keep us posted!

SuzyFL

I am 46 years old and was recently diagnosed with IDC 7-9mm in the right breast, stage 1. I have a mammogram annually followed by an ultrasound (US) because I have dense breast tissue. They didn't see it in the mammo, they saw it in the US. Thank goodness I had that US! My MRI came back clear, and tomorrow I am going for genetic testing (blood test). My paternal grandmother and aunt both had IDC as well, but when they were in their 70's. Will be scheduling my surgery for sometime this month. I have told a few friends and family but not my children yet. They are 11 and 14. We will be canceling our vacation we had planned for later this month, I know they will be upset, but I think they will really want me to be healthy again so we can plan the same vacation hopefully sometime in the future. Trying to take this day by day and trying to stay positive!

BebeZF

SuzyFL,

Sorry to hear, it is so tough to be going through this. Keeping positive and take it day by day is the best advice. Get all the information and all the test to make the best decision and just take it step by step. It would be hard going on vacation having the surgery hanging over your head. Maybe postpone for the end of the summer vacation when you are healed. Best of luck with everything and keep us here posted.

Hugs

Bebe

BebeZF

Phoenixmom

It's so sad to see how many of us are here, but at least we can support each other. Hang in there, it gets better, but it's a process and patience and positivity are key.

hugs to you and best of luck, keep us posted

Bebe

Tresjoli2

tough cookie that is a shitty HR partner. Do you work for a company with more than 50 people?

MsLin

SuzyFL,

I have a child right in between yours (12) and telling him was tough. I was straight forward and he knew before we told most anyone. He's been one of my biggest champions.

On the vacation front, consider holding off on cancelling. We bought tickets to Bali to take a vacation mid February this year. We'd purchased the tickets pre-cancer (2 months earlier). I had my mammo/US/biopsy a week before we were to leave. I had to wait over the weekend for the results and the whole time my husband kept saying that we might have to cancel our trip. I told him no. I got the official diagnosis on February 15 and we left for Bali 5 days later. It was the best decision I ever made. We decided that cancer didn't exist in Bali. We were able to enjoy ourselves and have a cancer free moment before life took that treatment downward spiral. Waiting a few weeks to have surgery won't make a difference in the long run. However, your children may have the opportunity to make memories like, "remember the time we went to Bali and cancer didn't exist?" t

toughcookie_21

Tresjoli2 - Yes, I work for a very large company (2000+ employees in the US.)

I would like to work as much as possible through this and can. I have a semi flexible position that enables me to work from home when I need to, however I do travel frequently, the burden of which will have to be picked up by others on my team. I feel like his response was leading me into taking STD for the entire treatment because it makes things easier for him.

I did find out this morning that my tumor is HER2 positive, so it puts me in the Triple Positive group. It also means that chemo is definite now, which really sucks. I could have made it through this without too much disruption in my personal and professional life if it were just a lumpectomy and radiation. I'll be doing all three now. Surgery is scheduled for June 20, unless the genetic testing comes back positive and then we are back to the drawing board with a bilateral mastectomy.

EastcoastTS

I also work for a large company and took STD -- and will again with Exchange. Mine was Metlife and they coordinated with the doctors, chose my time off and communicated to me and HR. I did nothing except file. FMLA was also filed at the same time.

However, you should perhaps speak to someone higher up in HR (if you want to open this can of worms). That's a horrid statement they made to you -- and risky to even say it, frankly.

I'm sorry about the HER2+ status. But you will get through this!!!!

sunnyjay

SuzyFL.... If you haven't already cancelled I would go on that vacation. I was diagnosed in March after planning a trip with my husband to Washington DC. We considered cancelling, but after having to do all the other tests (genetic, MRI, xray, etc.) when it came time to schedule the surgery, the next available date was just before our trip. I figured the surgery could wait one more week. So we took the trip 4 weeks ago, and I don't regret the decision. It was a time to have fun with our friends in DC and totally relaxed me and prepared for my surgery. I am now 3 weeks post-op and recommend to anyone to take some time before surgery or treatment to go away, even if it's just for a few days.

SuzyFL

Sunnyjay and MsLin thank you for that advice! I had my blood drawn yesterday for genetic testing (will wait 2-3 weeks for results) and we also scheduled my surgery for July 6, so now I have time to take the vacation and I can enjoy part of the summer making memories with my family. Also going to take a quick trip to visit my parents who cannot travel easily to visit me anymore.

EastcoastTS

I also kept the vacation on the books. Though it was pre-biopsy. But still...

Take your vaca!!!

meg2016

toughcookie_21 I also work at a fast-paced job, I actually didn't tell my boss or team about my diagnosis. I told him I had some health issues and needed to cut back on travel for a period and also took time of for surgery. I don't know how managing the work relationships will be but I do know it is possible to work through it. I had six months of chemo, and was definitely wiped out by the end, but as I learned to manage each cycle of chemo I learned which days I should plan rest and which days I needed to get ahead on work to accommodate those days.

Is there a social worker available at your treatment center? Where I went they had some really good materials on how to talk to kids about it, mine were 8 and 11 at diagnosis, happy to answer any questions if you have them. I know its overwhelming right now, my best advice is not to try to make longer-term plans but take it a month or week or even day at a time, whatever seems manageable. I am a planner by nature, but this was definitely a huge adjustment for me. I would do the same with my boss- keep working until I needed time off, just as anyone else would when they didn't feel well.

SBKH

I'm 43, having a unilateral left side mastectomy, no reconstruction, July 6th.

EastcoastTS

SBKH:

Sorry you're here but welcome to the best group for support that I've found. Hugs and warm wishes.

MsLin

Suzy,

Good call! Tell yourself that wherever this vacation is that cancer doesn't exist there. It could be just a campground, but it will give you positive memories to look back on. A frequent phrase in our house is, "remember when we were in Bali and cancer didn't exist there?" Dang. Now. I want to go back

Allabtbirds

Hi there. I was diagnosed with DCIS in January at age 40 and had bmx with immediate diep flap reconstruction last May. Path report found mass of DCIS was much larger than what had been picked up on imaging. Path report also indicated a positive margin; small amount of DCIS remains in lower outer quadrant of left breast. Drs don't recommend radiation or another surgery to remove remaining tissue as they believe it will be challenging to locate the tissue due to it's small size and reconstruction and there's a low recurrence rate. I wonder how DCIS remains if almost all the breast tissue was removed. Is it possible the surgeon didn't remove all of the ducts or that the DCIS moved outside of ducts? I'm confused. Currently the medical team recommends I take Tamoxifen for 5 yrs to decrease the chance of recurrence. Has anyone else been in this situation?

Labtech47

i was diagnosed this past March at age 47.

In oct 2016 I was diagnosed with Mastitis and took Bactrim. Swelling of breast went down but I had this weird itching inside my breast that just never went away. Complained to my GYN at the follow up in Dec and Doc said mastitis takes a while to totally heal. Nothing I could do would releave the feeling since it was deep inside my breast . I tell ya....it drove me crazy!! So I went to my yearly GYN exam in Feb and complained about how the weird internal itching was worse and I noticed my nipple was pointing to the right slightly. I then go for my routine yearly mammo. Found on mammo. 2.3 cm IDC after biopsy and US and MRI.

Had lumpectomy and guess what....the weird itchy feeling is completely gone. Yay!

Allabtbirds

Hi Labtech47,

Glad to hear the internal itching is now gone! I had some internal itchy sensation shortly after diep flap recon but it only lasted abt 2 weeks. How was your experience with Tamoxifen?