Recently diagnosed @ 33 and scared

[Lovemyboys3]

I have recently been diagnosed with Her2+ breast cancer. I am not sure of staging yet as I am having a bilateral mastectomy on Monday and they will be able to tell me more after that. PET scan came up clear except for one node that is suspicious. I am very scared as I am 33 with 3 sons (3, 10 and a 15 yr old stepson). I feel very confident and have a strong faith but can't help but be scared of what the future holds. My question is, if the PET scan showed no signs of mets (other than the suspicious node) could it still be elsewhere the doc does not see? Or could it have spread else where during the 4 weeks I have had to wait for my surgery. I tell myself every ache or pain I have in an area is mets. The research on Her2+ cancer is very scary and worry about seeing my babies grow up. Any words of encouragement is greatly appreciated.

Thank you!

------------------------
Biopsy results:
Grade 3 DCIS multifocal with microinvasion - largest area found 4mm
Neg Lyphovascular invasion
Her2 3+
Estimated length 4.8cm
Pagent's disease - States does not effect overall classification of tumor

[Cure4Cat]

I don't know that I can answer your questions but I wanted to offer some words of encouragement. I was diagnosed at 31 with Her2+ breast cancer, my son was 6 months. I remember having all the same fears that you are having right now. The waiting is the hardest part. I also had a suspicious node. I just wanted to let you know that I am now over 3 years out since my diagnosis and cancer free. My son will be 4 soon. I also have met other young women with Her2 breast cancer that are doing really well and they were diagnosed years before me. Be careful, a lot of the information out there on Her2 is from before Herceptin. Herceptin has improved the odds for women with Her2 significantly. I am really sorry you are having to deal with this.

[SusanN]

Hello and HUGE HUGE HUGS!! You have found a WONDERFUL, COMPASSIONATE, KNOWLEDGEABLE group of women here who will be able to answer MANY of your questions!!

I was soooo scared as well when I was diagnosed back in Feb of last year. I was diagnosed Stage 2a...you can see at the bottom of my "signature."

I want to tell you that with your faith, that is wonderful...I also have strong faith...at times we wonder "why"...but for now, please know that I will be praying for you and your precious family, the medical staff...believing for favor of everyone involved!! Try to breath, go hour by hour and KNOW we are ALL here for you!!!

There will be sooooo many women coming along giving you MUCH MORE than I've said...again, know I'm praying and believing YOU WILL GET THROUGH THIS!!!! <3

[Lovemyboys3]

Thank you so much for your words of encouragement and prayers. Right now I am doing my best to stay positive and love everyday with my boys and husband. It took me a while to sum up the courage to post and I am so grateful I did. Once I know more about my stage I will post because I know I will have a million questions. There is so much to learn and I know I have found the place to go with my fears and questions.

Thank you!

[NEDenise]

LMB3-
Welcome to our community! Sorry you need us...but very glad you found us.

Now, having said that... stop reading articles about HER2 breast cancer. You are absolutely right, they are scary! But they also don't present the CURRENT statistics and prognosis for ladies like us.

IMHO there is no reason to believe that you, like most of our friends here, won't come through treatment just fine... and move on to the next, cancer-free chapter of your life. It won't be an easy year or 18 months... but you can do it... especially if you have your faith to strengthen you.

And, of course, there's always someone here to offer support when you need it. So please come back often, to post, to complain, to ask questions, to laugh or cry... we're here for you.

Welcome! I'll be praying for you! Please keep us posted.
Denise

[Mary Anne in TX]

Welcome, to our group. You can see that I was diagnosed 7 1/2 years ago and am doing well. As I read early on about Her2 BC fear almost overtook me. I found that if I focused on accomplishing one step at a time and making a decision on the next step; it worked best for me. While I was older and a grandmother at the time, I am rearing my granddaughter who is now almost 14. Focus on the next step and keep asking lots of questions. And visit often. There are so many brilliant minds here!! Best wishes for Monday.

[Lien]

Hi,

I felt exactly the same, when I was diagnosed 9,5 years ago at age 44. My sons were 3 & 8, my stepsons 11 and 15. It was all so scary and I was sure I was not going to see them grow up. Well, here I am, and I/m doing fine.

I never had Herceptin, as it wasn't available at the time for early stage BC. I would probably get it now. I didn't have chemo either. I live in the Netherlands, Europe, and we tend to be less aggressive in our approach. I did do hormone therapy and some complementary therapies.

Your biopsy path report and PET scan sound very encouraging. No lymphovascular invasion and probably no affected nodes. PET scan often pick up things that are not cancer related. A small infection could cause a node to light up. So unless they actually find cancer cells in one node (which isn't too bad either) it sounds as if you will be there for your boys' weddings.

There are a couple of things you can do to reduce your risk of recurrence and I'm sure your docs will tell you about them. There's also tons of info on this site, so go have a look. And if you are not up to that right now, just ask. We'll help.

Two things that you can do yourself are: get enough vitamin D and get some exercise. Those two factors seem to reduce our risk of recurrence. So go out and walk in the sun, play with your kids as soon as you are up to it after your surgery. But don't overdo it. You have lots of time to get back into shape.

And no, those 4 weeks are not a problem. Many of us have had to wait longer. And I had to wait 10 weeks before I could start radiation therapy after surgery because of an abcess that wouldn't heal. I am very allergic to lots of things, and probably reacted to the sutures.

I am still around and cancer free. Now just take it one step at the time, get lots of help from anyone who is willing to pitch in, take your time to heal and in the mean time explain a bit of what is going on to your kids. They will sense something is wrong, and if you don't talk to them about it, they will come up with explanations that are a lot more scary than what's going on in reality.

Remember, we are all here to help you get through this.

Hugs

Jacqueline

[Lien]

Oh, and I forgot to mention: I've been told that these days being Her2 positive gives one a better prognosis because there are several targeted therapies for this kind of cancer. In stead of more scary, it should be less scary.

Hugs

Jacqueline

[suzan w]

Sorry that you needed to find us, but you will soon find we are an amazing group of people...both men and women...affected by Her2 + breast cancer. I remember after my diagnosis in 2005, reading everything I could find on Her 2 + breast cancer. At the time, herceptin had not yet been approved for use in treating early stage bc. Those were uncertain times...I was told by one oncologist that I had a very poor prognosis even though it was early stage. I was told by my first surgeon that invasive lobular bc was never Her 2+ ...all in all, very grim news. I went for a second opinion after the biopsy and found a new surgeon, and a new oncologist...both recommended very aggressive treatment. And my oncologist believed so strongly that herceptin was going to change the course of breast cancer treatment that she prescribed it for me "off label", in other words I could get it but my insurance company probably wouldn't pay.
My advice to you is to go after your Her2+ bc with everything available. Herceptin has indeed changed the way Her2+ bc is treated. For me, I truly believe in herceptin as my miracle. And finding this support group comes in a close second!
Please keep in touch. We have all walked the path you are beginning. And...don't forget to breathe!

['lizbeth]

Welcome to our group.

We wish you didn't meet the qualifications to join - cancer diagnosis. But you are here, and we are happy to meet you!

May you have an easy time with your double mastectomy.
Did you check into reconstruction options?

You'll be going through chemo (bummer) and Herceptin (not so bad) after your double mastectomy.

Where you offered participation in a clinical trial? Please check into it. You can check clinicaltrials.gov or you can contact the American Cancer Society.

Because of your youth, and your youngsters - I want you to have every advantage.

Since you have 4 weeks to wait for surgery anyway, a second opinion is advisable. It helps to know all your options by meeting with other surgeons and oncologist.

We are happy to support you through your challenges and triumphs with cancer treatment.

Welcome and best wishes for a return to good health.

[Lovemyboys3]

Thank you all for your kind and encouraging words. They have really put my mind and heart at ease.

'lizbeth - I will be having my double mastectomy on Monday Aug. 19th as I have already waited the long 4 weeks. I am having the Diap reconstructive surgery the same day. My BC is on the left but I was advised with my age and being Her2+ it is wise to remove both. So I decided to do so. I really didn't even give it a second thought.
My Onc told me I would have at least 18 wks - 6 chemo treatments along with Herceptin weekly at first and then on going for the first year. She did mention to me the clinical trials but I was in such a fog at the time it really didn't sink in. Because the out come of the lymph nodes may make a difference in treatment we decided to talk more about my options after my surgery. I will have 4 weeks of recovery time and will begin the herceptin and chemo treatments.

I originally had a doc that I wasn't quite comfortable with and who I just didn't feel gave me what I needed. So I decided to go with team of docs recommended by my cousin who is a 1 year survivor of triple neg bc at 43. (Note we both have had the BRAC testing and were negative.)

I am crazy nervous about my surgery but I know I am in good hands. I was in a such a bad state for a while, and still have my bad days, but all of you wonderful women and men have helped lift my spirits.

I will keep all of you wonderful, brave women in my prayers.

Thank you all!

Nydia

[Lovemyboys3]

Also, thank you for all of the information everyone as provided. I will certainly be checking into all of my options. Once I know more and feel up to it after my surgery I will post an update. All of the advice and suggestions are truly a blessing as I was feeling so lost and confused. There is so much to learn and understand.

God bless,

Nydia

['lizbeth]

LoveMyBoys,

It sounds like you are in very good hands. I think having an immediate DIEP reconstruction following a double mastectomy is a very good plan. The DIEP will be major surgery compared to the double mastectomy, but at 33 it is likely you will bounce back really fast. The first week is the toughest. And if they give you the traditional drains after surgery - that was my least favorite part of the recovery. They don't want fluid building up so I ended up with a long tube that lead to a collective bulb in 3-4 locations. I got to drain them twice daily and keep a log. When the drain amount drops below a certain level - out they come! That was a good day to have them removed.

I was able to keep the pain under control with Tylenol, and needed it for maybe a week or so.

I am so glad that you switched to your cousin's doctor. Sounds like you are much more comfortable, and I am glad they mentioned clinical trials.

I'm a little pushy about participating in studies - because they are so important to the future of cancer treatment. And typically they compare a new treatment to one that is the "Standard of Care". I will be highly encouraging for you to examine your clinical trial options - especially due to your young age, and a family history.

When you are recovering from surgery make sure to get the Pathology details from your doctor. Your oncologist will be adjusting your treatment based on the pathology report after the surgery. They will determine the exact sizes of the tumor (s), determining the aggressiveness of the cancer cells, checking for lymph nodes status, clear margins, and possibly a recheck on receptor status.

When you meet with the oncologist it would be a good time to discuss joining a clinical trial. What you've discussed now is the standard treatment of 6 treatment every 3 weeks, and the year of Herceptin.

Herceptin is a targeted therapy that blocks the Her2 receptor on the cell surface. Compared to chemotherapy - this should be very easy for you to tolerate. There are new Her2 treatments that have been approved: Kadcyla, Perjeta (metastatic treatment approval) and Tykerb. Also there are some vaccines for our her2 cancer that are in clinical trials for both early and advanced cancers.

If you had to be diagnosed with cancer - you lucked out with Her2 positive. We've been very fortunate to have so many new treatments. A cancer that once was very unfavorable has become very treatable for the majority of our group.

Post back and let us know how you are fairing after your double mastectomy & reconstruction.

If you have any questions or complaints, or just need some love & support - we've got hundreds of ladies that know exactly what you are going through.

Good Luck for an easy time tomorrow!

[carlatte7]

I am sorry you need to be here, but good luck tomorrow...please check back in and let us know how you are doing. Re: worrying...I remember practically begging my surgeon to do a double mastectomy for my stage 2a HER2+++ bc. She said, very calmly, "The data does not support your conclusion!" I worried about a rogue cell leaking out of my one + node between the end of chemo and surgery. I worried that the cough i get every spring and fall was lung mets. I worried that my 24+ years of migraines was brain mets...it just comes with it and it all sucks. It will get better

[NEDenise]

LMB3-
Lifting you in prayer right this minute...
Lord, please watch over our new friend as her surgeons work to remove all traces of cancer. Help her in the days to come, to nurture her body and soul without feeling self-centered or selfish. And Lord, please help us to support her as she returns to health.
Amen!

[Coux92]

Prayers for you and your medical team as you have your surgery. I wish you a rapid , uneventful recovery. I too was told by my oncologist that its good to be Her2 positive as we have specific, targeted treatment. I'm half way through chemo, it's doable....
Heal well and be strong, don't worry about the times you feel a little weak, that's just some down time that is re charging you batteries for the continued fight!

[KsGal]

Sending lots of prayers and positive energy your way.

[gqmom]

Hello! I was also 33 when I was diagnosed...and my boys were 2 and 4 (almost 5). I'm a little over two years out from my diagnosis now. This website has been a tremendous encouragement and place for support. It IS very scary to be diagnosed, especially when you're young and have small children. I still worry and wonder if my doctors have "missed" something and go down that dark road of "what ifs" every time I have a cough or a headache. BUT...time really does help and I find comfort in everyday life. I just wanted to chime in and offer my support. You can message me anytime if you'd like!

Corri

[LeahM]

Hi LMB3,

I'm a little late in chiming in but welcome to the best support group you could ever find. I am sorry you have to join us but glad you found us.

I was 39 at diagnosis and my daughter was 8. The hardest part of my treatments was trying to assure her I would be OK (esp. when I wasn't sure I would be). I'm still afraid of what the future holds for me but I have learned how to truly "fight" and feel that both my daughter and I learned valuable lessons over the course of my treatments.
All The Best
Leah

[Lovemyboys3]

Thank you all for the well wishes!

Its been 10 days since my mastectomy and reconstructive surgery and boy has it been a ride. All went really well though except for a crazy reaction to the morifin after surgery. I apparently hallucinated on the first night after surgery and got out of bed, wires and all, by myself and only figured out what was going on after I was standing in excruciating pain. Nurse got me back into bed and was amazed how I was able to even get up and I really don't have a clue how or why I did it but that night my pain meds where changed and all was better.

Pathology report: Good news/Bad news... Lymph nodes were benign. YEA! Margins were not clear. Booo! Stage 1A is what the docs say. 7 areas of invasive cancer each about 1mm no larger than 4mm and the rest was DCIS. The remaining areas are all DCIS with no invasive areas left. I will be having a second surgery to try and remove the remaining positive margins in the next few weeks. Surgeons are confident they can remove all positive margins as they are very close the the surface but if in the end its not a success, radiation will be needed. Prayers for clear margins after this next surgery is greatly appreciated.

Chemo: My oncologist is on the fence with chemo as she says I am a very unique case. With it being a very early cancer she says in most cases chemo would not be needed but since I am HER2+3 with Ki67 30% (apparently the rate the cells are multiplying) she is leaning toward chemo for me. Any one out there with this situation? I am leaning on being more aggressive and having chemo but not 100% sure. My surgeon also feels chemo is the way to go due to my age as well, so more than likely this will be done. All will be decided after the out come of my next surgery.

Keeping positive thoughts and prayers to the powerful loving lord above,

Lovemyboys3