Newly diagnosed

[Pamelaflores]

Hi to all, new here and just diagnosed on December 19. I am 34 years old and I have invasive ductal carcinoma. It was an agonizing week in a half waiting for my results to come back and I feel completely helpless as it’s too close to the holidays to get in to see any surgeons and my insurance hasn’t given a pre approval for MD Anderson yet. I’m desperate for answers. All I know at this point is my mass is on the left side and I am ER/PR negative. The mass seemed to quadruple in size over the last 3 weeks and at time of biopsy they said it was aprox 3.25cm. It’s huge. The only good news I feel like I got was that the biopsy came back negative for my lymph nodes! I am newly engaged and was planning my destination wedding for June 6, 2020. We were going to start trying for children immediately. I feel so overwhelmed and like my whole world is upside down. I don’t know what to do... are there any tips someone can help me with for coping? Maybe just to help calm my nerves while I sit and wait for these holidays to pass so I can be seen? I’m terrified.

[Dogdoo]

I had Invasive ductal cell 3 years ago.

Was er/pr+, HER2-.

Had lumpectomy; had small spread to lymph nodes.

No chemo. 6 weeks of rads.

Was on anastrazole for about a year or so but discountinued for my own personal choice/reasons.

It did give me night sweats/hot flashes.

I'm post menopausal so other meds would probably be used for you.

It's scary but my doctors were incredible and all in all, it was okay for me.

My skin didn't like radiation so had a few issues there. But healed quickly.

Have some issues in my arm/ribs from a combo of lymph node removal and the radiation but nothing serious.

You will realize you're stronger than you think and you'll get through it.

[Pamelaflores in reply to Dogdoo]

Thank you so much! My doctor mentioned that could be the route we go but it would be up to my oncologist

[Dogdoo in reply to Pamelaflores]

I forgot to add; I worked full time through everything except a couple days when i had the stupid staph infection under my boob.

I didn't find fatigue too big an issue, was more tired than usual but I worked retail at the time and was able to do my job without too many limitations.

My original biopsy didn't have clear margins so had to have the lumpectomy and they did lymph nodes at that surgery.

I was happily surprised i didn't need chemo since i had the small spread.

Dr said tests they did on the tumor indicated the benefit of chemo to overall survival, it wouldn't be worth the risks and side effects.

[Mmnyc]

Hi Pamela,

I’m so sorry that you have to end the year with this diagnosis, 2019 was a terrible year because I was diagnosed in May with invasive breast cancer in my right breast. I had a small tumor plus it was in the ducts (same breast). My breast surgeon recommended a mastectomy right away so I had a choice one breast or both for the mastectomy. I chose both because when all the attention was on the right breast I developed a weird mass on the left that turned out to be benign but I didn’t want to live with the fear of it turning malignant down the road.

Now looking back on this difficult year for me the hardest part was waiting for all the result, all of the horrible mri’s and core needle biopsy’s I had to endure. I felt like I was being punished and I would cry through each procedure. I never wanted my family to come along because I knew I would cry and didn’t want them to cry as well. Of course that’s just me please by all means bring your family if you need them for support.

I know what you’re going through now, the sleepless nights, googling this and that and I want to tell you that things do get better. You are young and have a full life ahead. Focus on the positive things in your life. Of course cancer will try and derail you but you will go on and persevere. You will discover how strong you are. If you want to have kids consult with your oncologist. Your treatment plan will be unique to you. For me, I went from stage 1 to stage 1b after my mastectomy. I had no lymph nodes involvement. I’m curious, how were they able to know there’s no lymph node involvement with you?

After surgery they will tell you about your margins as well, they will give you an ocotype score and basically this will determine your treatment path.

After mastectomy I had to get chemo even though I was stage 1b because my score came back a 41. Now I’m on hormone therapy (just started) lupron injections every 4 weeks and anastrozole in a couple of months (not looking forward to that) for the next 10 years.

Now I will tell you that the chemo did send me into early menopause. My oncologist did ask me before chemo if I wanted to have kids and I said NO, so we were ahead with it. After I finished my chemo my period did come back and I was ovulating. The lupron injection and pill are suppose to send me back to chemo and keep my estrogen away. I know of several young women who’ve had children after they were diagnosed with breast cancer. Share all of your concerns with your oncologist. He/She will guide you. You will be ok. You are strong and have a good support system. You have a wedding to look forward to and a beautiful life with your future husband. Cancer can take many things from us but it can’t take away your true essence or your dreams!

[Pamelaflores in reply to Mmnyc]

Wow your response just blew me away! Thank you so much, the outpouring of support I am feeling right now makes me feel so loved. It’s just scary which I know you can relate!! They did a biopsy on my lymph nodes when I had the biopsy done on the mass in my left breast and that’s how they determined it wasn’t spread yet. 🙏🏼 I really appreciate you letting me know things do get better. I’m so ready to just have answers!

[RobertaG1961]

I thought being diagnosed in October (National Breast Cancer month) was bad but December 19 is clearly worse. That just sucks! I remember getting a call from a doctor on 12/23 but when I called back she was gone until after the first of the year. There is no hell like the hell of waiting for results. Nothing that happened on my journey compared to the agony of waiting so my heart goes out to you.

Here's my advice to you:

- take this one step at a time. Do a lot of breathing while you are waiting.

- Have you been tested for HER2? You didn't mention that.

- decide on a buddy - it's good to have someone to go to appointments with you and take notes. Sometimes it's hard to hear things when it's about your life. Give your doctors a letter that says they can discuss your healthcare with them. If things get overwhelming, they can make some calls.

- don't leave any appointment without copies of any tests.

- while you are waiting start organizing all of your medical records as best you can. I have a document in which I store lists of all my doctors, their phone numbers, my pharmacy (including address and phone) supplements/vitamins/drugs I take, dates of tests I have had, vaccines, and any other medical information (including my appendix at 11) etc.

- rent/stream/watch every funny movie/show you have ever seen or heard about - laughter is good

medicine. If there is a movie you love, watch it! If you have a favorite book, reread it.

Where are you located? Let's see if there is a good group in your area or a phone group. No one understands this like others who are going through it or have been there. I know sharecancersupport.org has groups you can phone in for.

Roberta

[Pamelaflores]

Wow thank you so much! I am located in Houston Texas and yes they did the HER2 test and I am still waiting results from this!

[RobertaG1961 in reply to Pamelaflores]

There is a great group in Austin, TX - Breast Cancer Resource Center - (bcrc.org/)and they may have groups in Houston....

I know one of the patient navigators and since her email is on there website, I'm sharing it with you. Marjorie Gallece [e-mail] bcrc.org/about-us/

[gladudey]

Pamela, hang in there!!!! You need to hear some good stories! You also have to speak to a facilitator who not only is a survivor, but has a ton of knowledge, and helps recently diagnosed young women ! And after you are familiar with all the different treatments YOU will chose with your doctors, what is best for you!

Then you will make all your decisions for your future with your husband, and when it will be safe for you to become pregnant! Are you seeing your doctors at MD Anderson?

Right now you need to have:

1) An excellent Breast Surgeon.

2) An excellent oncologist.

3) An OB/GYN Oncologist to advise and guide you through your future

pregnancies.

4) Most important: The support of your future husband and of your family.

5) We, the HelpLine survivors at SHARE are here for you, 7 days per week!

Pamela, you are young, you are strong and with guidance and faith, you will succeed! We are with you! Best, Gladys

[Pamelaflores in reply to gladudey]

Your message is so encouraging! Thank you! And to answer your question, yes and I was able to get to MD Anderson TODAY! My appointment is at 1pm at MD Anderson and I can’t wait! I am so ready for some answers. I have faith and I am strong, not only will I beat this cancer I have an ARMY of support behind me. I am so thankful for everyone who has been a part of this journey so far and it’s people like you who give me hope ❤️

[gladudey]

Pamela,

We are here for you. Call us at SHARE. The more information you get, the stronger you will be to make your own decisions. The reason you need to consult with and OB/GYN Oncologist is because you want children. Keep us informed. 2020 is the year you are going to fight and win your battle! Best regards.