22 and BRCA +

Hey, Mina!

  I just found out I have the BRCA2 gene also.  However, I am 45 yrs old, so losing my ovaries isn't such a big deal, but you may not need to lose them just yet if you want a family.  The boobs really need to go, even if your lump isn't cancerous.  This gene almost guarantees you will get breast cancer.  With all of the great reconstruction they have now, it shouldn't be a problem as far as looks go.

  I can't believe the insurance is giving you such a hard time about this.  It's just terrible.  I don't think that you are blowing this out of proportion, but worrying too much will not help your state of mind.  I say listen to your onco, since he seems to be the only one with the right ideas.  I read a lot of posts on this board about having to wait a long time for tests and then results.  Try to hurry them as much as you can, but try to be as patient as you can, too.  Something I have learned since this happened to me, is that you have to be really proactive, more than you ever have been with anything in your life.  I don't know how it goes in the military, but if you think a doctor is not caring about your situation, you need to change them until you find one you can work with, because chances are, you may be working with them a long time.

  I'm so sorry for your situation, you're definitely too young to be going through this.  I'm certainly no expert myself, but I was very blessed that my doctors rushed everything because it grew so fast.  I'm now on chemo for the next 6 mos, and then we will do the double masectomy and take the ovaries. 

  I have a sister who is 24, and now she will have to be tested for the gene, and will probably face the same situation as you.  I'm praying she doesn't have it.

  Mina, I will be praying for you.  Be strong and thank you for your service to our country!

Hi Mina,

I am Nancy and I generally post on the TNBC Foundation site. A good friend of mine saw your post and knowing that we were in the military at one time ask me to read your post. My husband is a retired Master Sergeant from the Army. May I ask if you are using military facilities or civilian? There is no reason why they should make you wait this long for anything! We have a gal on the TNBC site who will tell you that perhaps you should also go to the FORCE site. http://www.facingourrisk.org There is much info on the BRCA gene on this site, and perhaps they can help also. In a military hospital, you really do not have a choice as to the physician you will see. Do not take no for an answer. You have waited long enough. From the information I have read, many BRCA+ gals with bc are triple-negative. My daughter Lori (46), was dx TNBC June 2007. She is now going for the BRCA counseling and then for the testing. My grandmother died of ovarian cancer at age 35.

I know that you don't want to make waves, and the military frowns on this. I always felt as though we were just numbers to them. However, this is your body...your life...and immediate action is what you want and certainly what you deserve. Do not back down! Tumors grow quickly, and the smaller they are when found, the better results you will have in treating this cancer beast. I am appalled that they have made you wait so long to get the medical attention you need.

I will check in to see if you have replied to my post. If you have to, you can call your US or State Representaive, or Senator. That should get the ball rolling.

Hugs,

Nancy

Amanda,

How could they possibly deploy you when you have a lump in your breast, and have not yet had a diagnosis? I take it you are stationed in San Antonio? How will they treat you if you are deployed? In Iraq? You have to make waves Amanda....you have to! They do not have the right to deny you medical treatment. You are in the Army, and they have to take care of you. Families are sometimes......often pushed to the back when it comes to medical treatment, or for that matter anything. However, when you are enlisted, have volunteered to die for this country, then they had better step up to the plate and give you the care you need and require.

If you ever get on the TNBC site, you will see that the BRCA+ gals and their families are more at risk due to the mutation of the BRCA gene. Triple-negative bc is very aggressive and as I said the tumors grow quickly. There are so many very young gals being dx with TNBC. One at age 16. I don't know your race, but if you are  African American, the percentage is higher. Tnbc, if that is what you have, responds very well to chemo. I cannot believe that they haven't even done a Sentinel Node biopsy or anything. What are they waiting for? Have you seen a surgeon?

My husband just walked in and said the same thing that I did. Call your US Senator or Representative!!! Have your family call them, and do not relent until they have gotten you the care that you need. Breast cancer kills over 40,000 women each year!

I am not one to sit idly by and allow the government to take control of my destiny. This administration has failed our Armed Forces miserably, and for that I apologize for them, as they would never admit any wrong doing. It seems that many docs just pooh-pooh the very young women when they say they have a lump. Well, they had better get their act together,as this bc is now an epidemic!! If you have time, please join us on the TNBC site. Please let me know how you make out. As the mother of a daughter dx with TNBC, I am here now to fight for all of you. She had any and every test she needed, and second and third opinions, and due to the fact that she had very good insurance, the treatment. The Government boasts of the excellent state of the art facilities that they have, best doctors in the world, and yet they have made you and hundreds of thousands of our military beg for the care that they justly deserve. How pitiful!!

Again....my deepest apologies!!

Many cyber hugs Amanda

Nancy

Hi Mina,

oh, you must be so scared! it is so upsetting not to know. One can fight, but what while we don't know what to fight?

It is good that your aunt disclosed the BRCA mutation. Without this, you still wouldn't know, and this would put you even more seriously at risk. You are still facing lots of choices, choices that are going to dramatically change the course of your life; the only way you can face those choices is by acquiring as much knowledge as you can. No-one, no doctors, counselors, friend or family will ever be able to tell you what to do, because they are not you, and they cannot imagine your priorities.

Now, a bilat mastectomy - while totally scary - is not that bad. Frankly, boobs get rebuilt today, and in very efficient ways... I am also a BRCA2, I am 44, and I had first a left side mastectomy, then I had a fight with the insurance to get the other off as well. Now - heck, I have better boob shape and tone than I ever had!!! I lost my nipples - because I had cancer. You may be able to keep them... or you should also know that Plastic Surgery build very good and realistic ones - nobody would even have to KNOW!!!!

Ovaries are a tough choice at your age. If you want children, you may want to look at the statistics.... it is best to get them out, but per my onc it isn't as urgent, you have the time to think about it.

Just take things one step at a time, deal with what is most urgent - that is, your lump. A biopsy is a must, and an MRI will also help in determining size and position of the mass. Also, a bilat MRI will deliver a full view of both your breasts, and make any possible mass a lot more visible.

Remenber: a non-clear mammo doesn't necessarily means cancer. I wish you the best of luck.

Hi Amanda,

I am proud of you and I bet the other gals are also!! That was the push that you needed. You have a great SM! There are good people in the military....I know...my husband was one great 1st sergeant.

I am so glad that they are doing an ultrasound. Possibly this is just a cyst, as many young women tend to have dense breast tissue, and cysts also, as our 5 daughters have. However, you be sure to tell them that you are BRCA+, when they do the ultrasound. Even though it should be on your records.

When my daughter Lori had the ultrasound, they read it as a cyst. It was not. When the surgeon got in, he found it to be cancer, did not do what he should have done. He should have cleared the margins, and when he cut into the "cyst", it was not measured, so thusly, we will never know the exact size of the tumor. They thought it was 5cm. This led to her having a second surgery at Magee Women's in Pittsburgh for the mastectomy.

 Many women have cysts, and they are never more than cysts. Hopefully, you are one of them. Lori's GYN felt the "cyst" for a few years, and just dismissed it as such. So did Lori. When it began to "hurt" and was "itchy", that is when she started to really complain. They told her that cancer "does not hurt, nor is it itchy"! Then the "cyst" grew by leaps and bounds.She wanted it out. It was probably there for 10 years.

If you are not satisfied with the results of the ultrasound, still have doubts, then it is time for a breast MRI. Demand it!! Sometimes even ultrasounds or the person who reads it are wrong. They were in Lori's case, and many many others. Lori had a second tumor behind the nipple area which the ultrasound did not pick up and was found with the MRI.

I totally agree with everything that lilith has written in the post above. She has been there....done that.

Let us know what the results are, and how you are doing. Keep standing up for yourself! One day at a time...one informed decision at a time.

Hugs,

Nancy 

im 20 years old and my mother got breast cancer when she became pregnant with me and she was only 28, and passed away when se was 30. I found a lump towards my right armpit a while ago and they said it was nothing to worry about but its still there and getting bigger, got it checked again today and have an ultrasound apt tomarow, im so scared...whats the likely hood of this being cancer?????

Not knowing is the worst part and you are right to be vigilant.

 I would recommend that you push for the ultrasound and ask if they would FNA (fine needle aspirate) the lump. That way, you can get a clearer idea what it actually is. Then and only then can you make an informed decision. It could be cancer or it could equally be benign. Has the lump changed in size at all? Normally cancerous lumps increase in size very quickly and non-cancerous stay the same size or grow very slowly.

 Mastectomy and oopherectomy are both very major operations and not something you would want to rush into at any age. I had my bilat at 29 because I already had pre-cancerous changes and I spent 4 years researching it and finding out the best reconstructive procedure for me. As you are BRCA positive, you will probably need to have a mastectomy at some stage so I recommend you look up more about the op and the different reconstructive procedures so you're fully prepared.

 I had my first lumpectomy at 15 and had absolutely no idea what I was having done and I didn't want to either. A mastectomy is a far bigger operation though and not one I would have ever wanted to go into without full knowledge.

 It is very frustrating that so many younger women are fobbed off by the medical profession so stick to your guns and carry on pushing to be seen as top priority!

 Meanwhile, I wrote this website especially for younger women who've found breast lumps that might help (and Jenamae - you might find this useful too)

http://youngerwomen.bcpals.org.uk/

Hi mina,

I have been waiting for you to get back with news from your ultrasound.I am going to give you a few links for fibrocystic breast tissue, and also one for vitamin D.

The gals on the TNBC site are really pushing for everyone to have the vitamin D test. Many are reporting that their levels are low...very low. One gal said hers was....1...one! my daughter Lori's are 73, which is fanrtastic, and mine are 53, which is also good, but I want mine higher. D is so important for a healthy immune system and it hepls build bones. They are saying that it could possibly prevent Bc, or recurrence. Please have thenm do a D level test on you.

Lori's ultrasound was read as a fibrodenoma cyst, but it was a tumor. Had they done an MRI as they are doing with you, she would not have had to go through 2 surgeries.

As we have all said, many young women have cysts in their breasts, and most are benign. They can do a biopsy, needle or open to determine exactly what it is. Perhaps when you go to the surgeon tomorrow, he will determine exactly what the next step will be. It is about 9 months now since you found the lump. Has it grown any larger?

Mina, just make sure that you continue to take charge of your care. If you are not satisfied with what they tell you, then demand that they do more.

Keep us updated, please,

Nancy

http://www.nlm.nih.gov/medlineplus/ency/article/007216.htm#Signs%20and%20tests

 http://breastcancer.about.com/od/mammograms/p/fibroadenomas.htm

http://www.vitamindcouncil.org/vitaminDToxicity.shtml

http://www.vitamindcouncil.org/

http://en.wikipedia.org/wiki/Fibroadenoma

Mina,

What transpired from the time you saw one doctor to the surgeon? I am confused. Did they do a biposy, what happened? I see no where that they have diagnosed this as breast cancer.Now you are talking about a bilateral matectomy, and a hysterectomy? They "think" that it is microscopic endometriosis? They Think? Did they run any tests? Here is a link to how they determine endometriosis. They have to do it surgically.

 http://www.aafp.org/afp/20060815/594.html

Here is a link for microscopic endometriosis

 http://www.endometriosistreatment.org/html/microscopic-endo.html

Apparently you finally saw a caring doctor? WOW! About time. What have they done to our Military personnel? I am so ashamed! I aologize for what you have had to go through. Oh yes! Let's only worry as to whether you can deploy when scheduled. Let's not give a damn as to what is wrong with you.

 Did this surgeon feel the lump, and as I asked before...has it grown? This is not the way "things" are supposed to transpire. Not even close. Maybe in Russia, but not here in the United States. Please get back to me, as I have been checking in to see if you have posted.

Nancy

Hi there Mina,

Brilliant doctor indeed! Did you have the surgery at a military hospital? I am going to include a link on the surgery at the end of the post.

So you are doing the bilateral due to the fact that you are BRCA1+? I know that if my daughter tests positive, she will have her other breast removed, a hysterectomy and a oophorectomy. She is 46 and has had 3 children. You are so young to have to deal with all of this at age 22 Mina. Of course, if the Army would be looking out for your well being, this could have been resolved 8  or 9 months ago.This could well be just a cyst. I will look for your post tomorrow.

Nancy

 http://www.webmd.com/infertility-and-reproduction/guide/laparoscopic-surgery-for-endometriosis

Hello, I'm 23 and Brca1+ and Brca2+. I'am considering having my breasts removed and reconstructed. My mother died at 30 from BC. Although, I'm afraid I'm to young to think about surgery just yet. I don't know if I should be careful and just do my mri's.. I'm married and want to have a family within the next few year. Do I get that out of the way before surgery? Are there any younger people out there who have done this surgery? Just looking for some guidance.