33 years old, no family history, shocked at diagnosis

It is shocking, like a punch in the gut isn't it? I don't have any knowledge about MD Anderson, but I would go if you felt you had to.  I am in SA and was fortunate enough to have a sister that is an oncology nurse, so when she heard of the diagnosis and talked with her bosses, they recommended an oncologist while I was in with another one.  When I told them the name, they told me to grab my scans and RUN out of the office. 

I was 30 when I was diagnosed, with 4 small children and in a wonderful career.  almost 2 yrs later, I still have my wonderful 4 small children and a more wonderful career.  I HAVE to take one day at a time, somedays are better than others but I am blessed to be alive.  I had stage IIIC on diagnosis and later found to have 1 brain met.  I am currently in remission and plan on staying that way for about 40+ years!

Hi LRAllen.  I am so sorry to hear about your new diagnosis.  I echo the previous posts.  I likened my surprise of bc after my baseline mammo (with no lumps or issues or even any reason to go get a mammo except the obgyn said "why not") and someone clubbing me with a tree!  I was shocked and unable to make any decisions for two days at least. 

It is a very personal decision to keep or not keep one or both breasts or go for the lumpectomy (if the surgeon gives you choices).  I would definitely listen to your doctors collectively as they have the experience and are looking at all your path reports.  But one thing I learned after getting a lumpectomy is that my "lump" breast is a full size smaller than the other one.  Also, my incision is near the nipple which caused it to pinch and turn sideways which is really dorky to say the least.  And the incision is 4" long concave like a  ditch.  Aesthetically, I would have chosen to do a double mx and reconstruct because now I'm way more self concious with the way it looks.  Also, I would have chosen both removed even though I had bc in only one because I am nervous about getting another bc, so with my busy life, I dont want to have to deal with it all the time.  (I have 4 kids and am 37 years old with a wonderful career)  I am going to go back and remove both as soon as I'm healed from radiation.

Hope it helps a little?

Hi,

I cannot give much advice right now as I am scheduled for a mastectomy in October.

I was diagnosed at age 43 and have 4 children ages 4-13. 

I just wanted to give you support and have you know that we are all here for you.

Hugs,

Ang

Hello - really sorry you are having to deal with this awful shovck - the good thing about coming here is that all of us have had this experience too and we know that it is like going into shock repeatedly for a while after you are diagnosed.  It does get better after a while.

 I am grade 3, IDC too.  IT is scary to hear Grade 3, but after you have been researching and learning, you will find that this disease is pretty complex and being Grade 3 isn't the worst thing in the world - don't let it worry you too much. 

IT is good to have choices and maybe more than one opinion.  As for the type of operation, because I am big chested, my surgeon did a lumpectomy and then breast reduction on both sides so things match.  This is a fantastic op but fairly unusual in the US as far as I can tell (I am in London).  IT may not be appropriate for you, but I have recently been corresponding with another lady who has opted for this.

Chemo induces a terrible fear in people.  I am currently a third of my way through a course of something called FEC.  IT isn't lovely but it certainly is more doable than I would have thought a few months ago.  It can get great results, and some people have it prior to surgery to shrink tumors, which works very well.  IT is sometimes possible to save your hair by using some things called Penguin or Cold Caps (there is a thread on thise site that discusses this).  They are unusual in the USA (you would need to buy your own but I gather they aren't too expensive); in England we use them a lot - they work for me, though my hair has certainly thinned.

 Like you, I have a career to consider.   I do chemo on a Friday, once every 3 weeks.  I could certainly go to the office on the Tuesday (I wouldn't feel great but could hack it).  I could certainly work from home on the Monday.  It isn't a fun experience but it doesn't hurt and I haven't been sick because the meds prevent that.  IF you can take a deep breath and try to develope as sort of open mind about doing chemo, you' find a place of more calmness should you have to do it.  Also, on this Board there is a monthly group for people doing chemo, so there is much support.

There is a bit of a learning curve and it takes a while to get to know your way around this Board, and finding sources of info that help you.

 You could also google places such as Sloan Kettering, and Johns Hopkins sites as there is good info on there too. It is worth researching the informational parts of this Board too.

 Once more, I am so sorry you have to be here, but wish you the very best of luck for the future -

warmest regards

Hi LRAllenM12, i too have been diagnosed with breast cancer at an early age(31yrs old) and have 2 young girls(cali almost 4 and Ella 2).  I found a lump in my breast in the middle of July 09' and went to my doc immediately! I had all the tests, mammo, ultrasound and they were still worried, so i decided to have a lumpectomy and just have it out.  My doc said it looked benign, but would have it tested.  It ended up being CANCER! I was visiting my best friend in Colorado when my husband called with the news....i was shock and numb to say the very least! I considered myself quite healthy and i do not have a history of this in my family.   I had a good 5 days of complete meltdown and could not stop crying.  My husband(who is a wonderful man) and i went to talk to my surgeon to get the full info.  I already knew in my heart, that i was going to opt for a bilateral mastectomy with reconstruction.  I have small boobs anyways, and they have never been one of my best assets so it wasn't a difficult decision for me.  My doc informed me that, radiation on the infected area of the breast works just as well, but for me, the worry of it returning would be so much less to just be done with them! I went to a plastic surgeon who showed me before and after pictures and was pleased(and will also be getting the a bit bigger!).  I had a blood test that came back good(meaning my other organs are working good and show no sign of cancer) but i am still super worried about my lymphnodes.  I have my bilateral mastectomy this thurs with reconstruction at the same time.   They will also be checking my lymphnodes too, so this will be (i am assuming) the time they tell me what stage.  I am expecting the worst and hoping for the best and that's about all i can do at the moment! Stay strong....at least try to!

Lauren,

Hindsight is always 20 20... with this said, I asked for a mastectomy and the dr's assured me that a lumpectomy followed by a reexcision (first surgery did not clear the margins) was adequate. I had my first mammo, no issue... then I got some red and heavy feeling in my chest.... FLIPPED OUT thinking recurrence... to find out it was an infection! URG! Not so fun, either... so they now sent me for an MRI and they now want to ultrasound the area to make sure the infection is gone... so part of me says, if I just started OVER, I would not have to fear mammo/ MRI results... I hope I can let my anxiety go as time goes on, but for now,.. each test I am completely freaked out until I get the results!

So, what I am saying is, having a mastectomy is not such a bad option in the long scheme of things!

Good luck Lisa!

I was also 33 at dx, with no family history. Quite a shock! My docs told me I would have to have chemo regardless of the pathology due to my age. Apparently cancers in younger women are usually more aggressive. I had a lumpectomy with SNB, then a reexcision with a full axillary node dissection, as it had spread. My tumor was also close to the axilla, and 1.8cm.  If I had to do it all over again, I would have opted for a bilat MX w/recon, but I had to make decisions so quickly and had little time to research. Waiting is definitely the scariest part!

Now I am through with chemo (6 rounds of TAC - not pleasant, but you get through it), 34 rounds of radiation, and starting Tamoxifen. Count on 8months - 1 year before your life gets back to normal. I did manage to work the entire way through chemo/rads. I would go in for chemo on a Friday and go back to work the following Tuesday. If your employers are flexible, work shouldn't be a problem.

Hope everything goes well!

Janine

Nicole---I got the lumpectomy/rads at the recommendation of surgeon, but I am going back in October to tell him I still want to get a double mx.  Like you I am nervous about getting reoccurences or new cancers, so I dont care what they say, I'm still getting them done.

JDEKing--My surgeon told me if anyone tried to give me chemo to run away and call him and he would refer me to someone new.  So far, no one offered it to me (I'm 37), but I was ready and willing to do EVERYTHING, including chemo.  I really hope that they made the right choice in not getting chemo.  I'm just getting rads and had a lumpectomy.  (Yikes!)

I had 2 tumors each 1cm and in the same area & 4/12 positive lymph nodes no mets.  I had a lumpectomy because the chance of recurrence was the same as if I had a mastectomy.  My scar is about 1" and hardly noticeable, my breasts look identical and I have feeling in my nipple.  I finished chemo in April & radiation in June & am on Herceptin til the end of the year & Arimidex for 5 years.  I worked throughout my treatment (but was lucky to not have to set an alarm, just went in when I woke & left when I was tired!) I am happy about my decision to keep my breast, especially because of the complications my friend has been having for over 2 months since her mastectomy with immediate reconstruction.  If I ever need to have my breasts removed, I would opt for spacers & implants.  I feel 100% healthy & have total trust in my doctors. You can live an almost normal life through treatment & can be 100% healthy afterwards.  Good luck in your decision! 

I was 33 at diagnosis in November, no family history.  My cancer was grade 3 and ER+ as well.  I think young women often have aggressive tumours.  I have a 4 yr old girl and 6 yr old boy and it was not an easy year for them to see their mom get chemo and lose my hair and have a mastectomy.  I chose to have a mastectomy instead of a lumpectomy and am so glad I did.  I had a few areas of DCIS in the breast as well that they would have never known about, didn't show up on mammogram. As well, I had cancer on the left side and doc said he wouldn't recommend lumpectomy as much as mastectomy because then I would need radiation over my heart area and he felt concerned about that since I am so young.  Yes, it was certainly a year from hell but I feel stronger for it, and it's certainly a mountain you can climb.  All the best to you and whatever decision you make for treatment, will be the right decision for YOU.  Get as many facts as you can, ask as many questions as you can.  Good luck.

Jill

Nicole your positivity is contageous!  Just what I needed today, thank you!  I also LOVE the hat with hair.  Where did you get it?  I absolutely hate my wig and have wearing hair headbands under hats but I'd love to get one that was combined.

Jilly, I never even thought about the fact that my radiation is going to be over my heart most likely.  Certainly something to ask when I meet with the radiation oncologist.  So thanks for mentioning it.  I'm wondering if they will target the area where the nodes were instead.  But I do plan to ask.

Lisa, how are you doing?  I totally agree with Pam, I know the doctors in this area are all in contact with each other. 

yes, it's worth asking about the heart issue.  One surgeon told me he would do either lumpectomy or mastectomy and either one is the same as far as outcome....but my 'second opinion' surgeon said no, it's not the same thing at all, because at 33 you have a lot of years ahead of you to possibly get heart failure from radiation over your heart area whereas if you were 75 you may not care as much, because if you develop heart failure down the road you are much older.  I didn't ask anymore on the issue, so I don't know what the risk is, or if it's pretty minimal, but it helped with my decision of getting the mastectomy. 

Another thing to consider, I went with mastectomy because I wanted both sides to look the same, and I am getting a skin-sparing mastectomy on the other side and both reconstructed at the same time.  I've had 2 kids and I am not going to have one boob up in the air and one down to my belly button one day lol.  So, part of the issue was vanity, but I really am scared of getting cancer on the other side, and I personally know I would have peace of mind getting the other side done.