Newly diagnosed and terrified

Hope0813

hello everyone,

I feel so happy this site exists. I'm 36 and just been diagnosed. Looking for something to give me hope. I'm overweight and a new mom of a 4 month old baby girl (my only child). Terrified I won't see her grow. Will I live? I often ask why has this happened if they say it’s so rare under 45. I was just starting life, in my prime and it took me several weeks to accept my diagnosis. I cry everyday. I look at my husband and my daughter and tears just stream down my face. They don’t deserve to go through this and I pray that I can at least live long enough to see my baby grow Into an adult. No one gives me answers or reassurance. I don’t even have an oncologist yet and my surgeon didn’t give me enough answers. I guess I just want a bit of hope.

dtad

I'm so sorry you have to be here. I hope you will find this community both comforting and full of knowledge. A little advice, if I may. To start stay off google. Try to get your information from medical professionals and here. I also think its very important to be treated at a major university teaching hospital as opposed to a small community hospital. You are my daughter's age and its so unfair you have to go through this with young children. Of course there is hope. It might be a long road for awhile though. Get as much help as possible, both mentally and physically. We are all here for you. Pease let us know if you have any questions or just need to talk. Good luck and keep us posted.

Anonymous

Hi there, first, you need to hear that you are going to be okay, and I'm telling you that right up front. Cancer is terrifying (we've all been there) but it is also just another disease--a serious one-but a disease, like diabetes, arthritis, etc. Don't give it any more power than that. It is treatable, and sometimes even curable through treatment (usually we don't know for sure, so it's important to continue to take care of ourselves throughout our life). It's not the death sentence it once was.

I echo the previous post: don't Dr. Google. Dr. Google is notoriously unreliable, and sometimes downright untruthful. Unless you are well-versed in hard research and know how to eliminate the b.s., ask your questions here, and find information and support here at this site. I find many members to have more research knowledge about treatment, outcomes, etc. than many oncologists, to be truthful.

You're ER/PR+. That means you have options for treatment that work well; it's harder to treat hormone negative disease. You're HER2--that's a plus, too, meaning the cancer is less aggressive than some. You've got some nodes +-but believe that they stopped the disease from going any further-that is what they are supposed to do.

I'll say it again-you'll be okay. So important to hear it. //we are here and we care. Finally, I'm sharing a thread from b.c.org "Young with Breast Cancer". You'll find other women in your age group with little ones who should be a great strength and support for you, but know you can post here or anywhere else and we'll all be there for you.

https://community.breastcancer.org/forum/27

Hugs/Claire in AZ

Gramto4

Hope0813

I know your diagnosis is scary but you have to believe that you’re going to be okay. You say that you don’t have an oncologist yet. You will feel much better and informed once you discuss your cancer with a oncologist. Having a plan to beat this is a very important part of dealing with it. What options have you been given? I had DCIS in my right breast and had it removed last year. I’m just finishing with reconstructing the right breast and revisions to my natural left breast. It’s been a long road but I’ve stayed positive throughout everything and I know that it’s helped me cope. It’s also important to share your feelings with your husband and family. Let them be your strength

Hope0813

Thank you dtad, Claire, and gramto4 for your time and kindness in responding. It means a lot to me.

I just had my mastectomy only on the right breast where the cancer was on Feb 13. Since I'm stage 3a and had 4 lymph nodes involved they mentioned I will most likely need chemo and radiation but I don't have a team, per say. I only had an oncologocal surgeon and plastic surgeon and I can't seem to get enough information from them. I'm with Kaiser but I want to change my plan. I don't like Kaiser at all. (Sorry if I'm going off tangent here)

My cancer was really strange because I had several IDC tumors and DCIS. They called it a 6 multifocal. I still don't understand anything about my pathology report. One tumor was said to be grade 1, then they said it's grade 2 and the DSIC is a grade 3. At first I thought the surgeon told me there were two areas of cancer but then it became 4 somehow. It's as if the cancer kept blossoming one right after the other in my breast.

All of this happened postpartum. I found a lump a month after my daughter was born but didn't think anything if it since I had abruptly stopped breastfeeding. I brushed it off and attributed the lump to a postpartum lactation related issue. On my 6 week follow up with my obgyn I foolishly didn't mention it and she didn't even do a breast exam! If she had, I might have caught this 2 months earlier. But either way it might not have made a difference. I just can't wait till hopefully all this is behind me so I can raise my little girl with my husband. I don't want her growing up without a mom.

Your voices, your advice and responses honestly put a smile on my face. Bless you all. Thank you so very much

Rambros

Sorry to hear that you are going through this (and during the first few months of motherhood). I was also diagnosed at 36. And for months I was beyond terrified and cried every time I looked at my 2 kids who were 5 and 2 at the time with the same fears you mentioned (I still pray that I’m here to see them become adults). I was worried that I’d never be really happy ever again. But you have every reason to be hopeful for the future! You will have a tough 2019 but then you’ll be able to move on (for the most part)and enjoy so many fun times with your baby. Take care!

B-A-P

I’m sorry you’re going through this. It’s definitely scary when you’re young with children. I’ve felt all the same things too and have had the same fears. And still do at times. It gets less intense over time . I was diagnosed at 30 and now I am 31. I also have a 4 year old. I’m a higher stage than you but I have done excellent with treatment so they are going for curative intent (which is not typical at stage four ) . I always hold out hope . Everything will be okay. I promise. Take time to process , get your team in place and go from there. Surround yourself with supportive people and don’t Be afraid to ask for help .

B-A-P

oh also! I had two tumours that couldn’t be seen until I had a pet scan. A biopsy of other tissue showed DCIS . So I had invasive and non invasive arbor the same ti

Moderators

Hope0813, we welcome you (and your husband and little child) warmly to our community. We're all here for you. Tangents are fine! We hope you can find a second opinion, or team that you feel you trust, to get through this!

Hope0813

wow, thank you again everyone. I'm so happy I joined here. This is an amazing community. God bless you all. It's just exactly what I needed.

BAP, I’m very inspired by you and your story. Thank you for giving me strength

blah333

I was diagnosed a month after my 35th birthday. It's a shitty time to have to deal with something like this! You have every right to be angry or feel gyped or uncertain. I remember thinking I'd rather die from this at 50 than have to fuck up my body now. It's like the last years of my "youth" (older youth but still) are ruined/gone prematurely and most people my age are having accomplishments and fun while I'm poor and going through the worst (although i'm being melodramatic for Stage 0 but still... it fucks with my mind often to this day). It's a lot to process but you can find many women here with a similar diagnosis (or at least the stage) - you can go make posts in the Stage III area, or IDC as well.

Did your doctors mean 6cm multi-focal? Mine was that size, just DCIS, meaning it wasn't just one cluster or lump, but in multiple places, and to cover the whole areas the span was 6cm, not that the entire 6cm was full of cancer.

Nobody deserves this. A lot of women go on to lead long lives after bc.. just take it one step at a time.

B-A-P

Hope0813

Thank you very much I've been pretty quiet on the boards but I promised if I had the opportunity to give anyone comfort , I would speak up.

Feel free to message me anytime if you need to talk. I remember looking at my son soon after the diagnosis and crying at everything he did because I just want to be here for him. He's my motivation through it all.

beach2beach

I'm sorry you had to join us but you will find a wealth of information and support. I'm only a year plus out and still cant always wrap my head around having this diagnosis. Though my kids were older, 22,19 and 16...I still couldnt imagine not being here with them. I was lucky in the sense I did not need chemo or rads. Caught mine pretty early, but I don't bank anything for sure. Never know. Yet I try not to let that get the better of me though it does at times. My sis was 48 at her time of diagnosis with IBC, many nodes positive automatically staged at IIIC. She is now almost 10 years out NED. So what I'm saying is there is always hope. She has seen her eldest daughter get married, have a child and now will shortly welcome her 2nd grandchild. It wasn't easy for her but she also had her doubts and I remember telling her she would be ok. Few years later she had to return that same line to me. No family history for us besides her and I. I did the genetic testing of over 60 possible mutations, nothing. Braca neg also. Who knows why this crap happens.

It's still so raw for you physically and emotionally. Give it time. Seek out support. Possibly post a topic if anyone has recommendations of oncologists in your area/state.

Love that little one and reassure yourself you will do anything to be with her and you will be with her for a long time to come. Keep us posted.

Hope0813

Thank you blah and beach for your posts.

My surgeon's notes stated “Multifocal ER+PR+Her2- IDC 6 foci ranging in size from 3.8cm, 2.7cm, 3mm, 2mm, and >1mm present in upper outer, upper inner. All margins negative, +LVSI

It also stated “sentinel nodes 3/5 LYMPH NODE + axillary dissection with 1/23 Lymph node + for a total of 4/28 lymph node +"

What I understand from this is that I had 6 cancers in my right breast? It's so hard to believe. Am I correct?

Then she recommended chemo and radiation. I'm still recovering and I finally made an appointment to meet with the oncologist for the first time next week.

Also, today I went for a bone scan and my CT scan is Thursday. I hope I'm clear but to be honest I have doubts. Ever since my daughter was born I've had joint pain when walking but foolishly I attributed them to postpartum pain since I was recovering. But after my cancer diagnosis I began questioning it.

I love all your kind words and optimism. It makes me feel very nice because it comes from you all, you know exactly what this feels like. And it's reassuring to hear you say it will be ok. I cry a lot and I think maybe I should get therapy because I'm so depressed. I used to be a very happy person. Now nothing makes me happy except my baby's babbling and smiling. But even when watching her it breaks my heart because I begin imagining dying and someone else raising her, it kills me. It's an awful tennis match in my brain. On the one hand I'm trying so desperately to be strong and positive but on the other I don't know if I'll have a long future.

And it irks me when my husband tells me to think of young babies who have cancer, which is terrible that they do (god bless children) but it doesn't change how terrible I feel because I have cancer. I'm sorry I'm rambling.

I've spent so many hours trying to decipher how this happened, what I did wrong. There's so much I could have done differently. I was inactive before, during, and after pregnancy. I often ate unhealthy foods, I was and still am overweight. But I never ever could possibly imagine cancer ahead. I should have been smarter. Now I'm just trying to liveand see what's next. I pray it hasn't hit my bones or elsewhere. And I'm a bit terrified of chemo. It just breaks my heart because I know you all, like me, may have asked why? Why me? It's terrible. I'm in a very very dark place and I hope and pray for the strength to pull myself out of this

alto

You didn't do anything wrong. This is just what the mind does when grieving: it goes through denial, anger, bargaining, depression, and acceptance. I felt guilty, too, but I live a healthier life than most of my friends, coworkers, and relatives and I got cancer while they did not. It just happens.

Crying is normal; this is scary. Crying lets you get out some of the anxiety. I absolutely jumped at therapy. It was so helpful to have a non-friend/non-family person to talk with. I also ended up taking Ativan at night to help with anxiety (your GP can prescribe it) so I could sleep. Post surgery, I got antidepressants. It made living through the changes easier and helped stop the uncontrollable weeping that started 3 weeks post surgery (our bodies go through a lot). If your hospital has a cancer social worker, call her/him for guidance on getting the process started.

And be sure you're eating well, hydrating, taking walks, and getting sleep. It's a strong foundation

Polly413

No. No. No. Your cancer is not the result of anything you did or failed to do. Its not. This part of it is the hardest because you don't yet have a plan from your oncologist. Breast surgeons are very knowledgable but its the oncologist who sets out your plan. Try not to look at it as though your treatment is punishment. Try to look at it as a good thing that gives you a chance to be with your daughter and live your life. What you want is not to avoid treatment but to get the right treatment and only what you need. So if you are not satisfied/comfortable with the first oncologist, get a second opinion. I did a very aggressive chemo and did it dose dense (which means a heavy amount over a condensed period) and came through it okay. And I am over 70 so it was supposedly harder for me than for a younger person. And I am a big wuss and was so scared at the beginning. A waste of worry. So try to avoid making assumptions about how hard it will be for you. Whatever it is you can handle it. Best wishes . Polly

santabarbarian

If you are normally a happy person, you will get back to that normal self very soon. This is a shock and a frightening experience. But you will find your new normal and will be able to feel like yourself again soon. I am so glad you can take joy in your baby. Luckily she is a perfect age to be cuddled and rocked and played with all day. She'll love it and so will you. That's good medicine!! (My kids are grown but I got kittens during chemo and it was one of the best moves I made... just to have so much enjoyment and laughter in my day.)

I have a friend w/ cancer who told me the most important thing is having a vision and a purpose of why you want to live. You have that! Now, you will gather referrals of the best oncologists in your community. Consider visiting a teaching hospital or cancer center if one is nearby. A second opinion can be helpful too. You have many years in front of you to be a joyful mother, watch your daughter grow, enjoy your husband and live out your purpose. It's important to guard your joy and not let cancer take it away. Wishing you all the best.

bestrongforeveryone

Hi

I just diagnosed 1 months ago and done surgery. I went through the same, except I am younger than you . Now I feel a bit better, as I soon will be starting treatment, I know I will be Ok, and I will see my child grow, many many years.

so ,you can do this, too

Hope0813

I’m so incredibly inspired by how strong you all are. This is the beauty of human determination, heart, and will for life. I have no choice but to be strong, I know that, especially for the sake of my daughter.

blah333

Hey - it sounds like yes, you had 6 different areas of concern/malignancy in your breast, but all in the upper quadrants (top half). So it probably did spread quite a bit, and was found in your lymph nodes. You should ask more details but generally they check the sentinel nodes first, and if those are clear they don't take any more out. (The sentinel nodes are the first ones cancer goes to, and the first area that the blue dye is seen that they probably injected in you before surgery or the day before. It looks like yours came back positive, so they took more nodes from that area, a total of 28 notes in which 4 came back positive for cancer. Hopefully soon they will have more information about what kind/stage etc (these are listed in people's footer's on the site, and there is usually a forum for each type of cancer so you can specifically talk to women who have the same kind as you). I would also be aware of the risks of lymphedema. Every women that has nodes removed can have swelling after surgery, but the more nodes, the higher your risk. You just have to be aware of how you move your arms and avoid certain repetitive activities.


You will probably experience people saying all kinds of annoyng things to. you or that rub you the wrong way even if they try to make you feel better. I was/am angry at having this happen so young, and my mom said "well women get it in their 20s too and even younger than you." but it just pissed me off because 85%+ of women don't get this at all so spending time thinking of all the people who have it worse and at least you're not in their shoes is not really constructive. Most people who haven't been through this have so many generic dumb things to say about it.

Hope0813

hi blah,

I absolutely agree that most people who haven't been through this make annoying remarks. I think the worst part of this experience was me wishing it was yesterday when everything was normal. For me it was especially hard when I returned 4 months later to the same hospital I gave birth to have a mastectomy. My experience as a new mom of only 4 months was so super close to my cancer diagnosis so all the blissful and joyous memories of motherhood are now intertwined with the dark, sad, and terrifying new memories of breast cancer. I wish I could enjoy being a new mom just for a while before all this but I suppose the good thing is that my baby is too young to understand all.

I'm missing out a lot right now because I can't carry or lift her for a month in order to recover from surgery. That part kills me

Regarding my lymph nodes, I pray the cancer doesn't recur with 4 being affected. Before my surgery the surgeon seemed so optimistic but she wasn't quite so positive afterwords

santabarbarian

Hope,

Is there a possibility you could use a baby sling, or something similar, so you can still maintain a lot of physical closeness with your daughter without it requiring lifting her? (To take a baby out of the sling, you can just loosen it and lay the baby down on the bed, and slip it over your head one-handed). Maybe a way to get those cuddles in. The good news is she is not 12 mos, and scooting everywhere and getting into things-- at least 4 month olds stay where you put them!

edwards750

Aw Hope so sorry your Dr doesn’t seem so optimistic but the fact is he/she doesn’t know for sure the impact of positive lymph nodes yet.Of course they don’t want there to be cancer in the lymph nodes and it does affect the treatment choices but it’s still doable. There are several ladies in my church group who had the same thing. Several did develop lymphadema unfortunately but that doesn’t always happen either.

I had a micromet in my SN. My MO only tested that one and I asked why and she said no need. They had to dissect and re-dissect to find it. Btw I’m 7 years out last August so there is reason to be optimistic.

BC research and treatments have come a long way since I was DX in 2011.

Keep the faith and keep us posted.

Diane

blah333

Maybe you could make a post about being a young mother, surely you aren't the only one. It seems like many women discover breast cancer shortly after breast feeding or noticing something off. Dealing with a new baby + cancer, I'm sure other mothers could give you some tips. Also check out the Stage III section, I'm sure they can help you through this more and keep your hope in tact. Whoever mentioned the advice of focusing on the love and enjoyment of your new baby, I think that is a good idea. You are in a scary position but you also have a beautiful miracle in your life! At least your baby is so young they have no concept of what is going on (though I'm sure they are perceptive of stress). At least you do not have to explain what is going on or worry your child. By the time they are talking and asking questions all the time you'll likely have all of this behind you.

Chenye_Tripp

My heart is with you. I am older, newly diagnosed and full of some of the same fears. I’m sure it is so much more frightening with a young child involved.

From all my reading so far, treating cancer has made many advances. Please take some comfort from that.

Take care, Chenye.

wity-pity

hi Hope0813:

I’ve been reading through your posts. I’m also 36 with a little one at home, two in fact. I don’t have my results yet, but believe we may be in a very similar situation. It’s devastating right? I’m trying to find strength but it’s hard. Good luck to you and your family and I’m thinking of you

beep7bop

might not b right place for this ? but how many of you were Bi-rad 4C before your Dx

Hope0813

I was both Bi-rads 4c and 5 before diagnosi

Spookiesmom

Don’t blame yourself for getting cancer. There are ladies here who always did everything “right”, and those who ate junk food, overweight, didn’t excercise, and we all got cancer. We got the short straw.

I will echo, stay away from Dr Google. He is not your friend.

Speaking of friends, now is when you will find the true ones. The ones who really show up with a covered dish, or drive you to an appt, or stay with your baby. Or just sit with you.

When you get a plan in place, it does seem less daunting. Gives you a small feeling of “doing something “. And you are!

It won’t be a fun year, but you will get through it. Keep your camera handy get lots of pics of your little girl.

santabarbarian

I have to disagree about Dr Google. I found out about Metformin on Dr Google, and when I asked my MO about it, he immediately agreed to prescribe it. (WTF? Why did he not tell ME, if it's thought to be worthwhile?) That is just one example. I found a study about anesthesiology practices that are less or more correlated with metastases, and called my anesthesiologist to inquire about what his methods were prior to surgery and made sure he would give me the right stuff. I have been a better advocate for myself with Dr Google helping me.

I think the problem is BAD googling, when people do not know how to refine the dates of a search, and look up outdated info, or old stats, or when people can't tell the difference between a BS article and valid science from the NIH.

It is not helpful to be misinformed, but it is also not helpful to be UN-informed. I have encountered women on this site who are very uninformed about their own situation. It can be detrimental when one has rose colored glasses on, even if that may be less stressful.

TNBC (my form of cancer) is a beast and it is good to know what one is up against and what practices might help.

CaliKelly

Hope,I'm just finished with all my treatments for stage 3c. It's been a long trip, but somehow already fading from memory. I'm so enjoying feeling fit and healthy. You will surprise yourself with your strength as your treatment moves along. We find we are able to do whatever we have to do.The scariest part is the beginning when everything is so unknown. Everything you have to do, you've never done before. That's so frightening, especially with your new little baby.But here's my message, you are not a statistic, you are not your positive lymph nodes. I never once considered that I will die from this! Just never entered my mind. The treatments are challenging but you can do it.One step at a time. You'll be changed by this, we all are, but you can make it a positive change. I'm even more awesome than I was before breast cancer, if that's even possible, 😉 and you will be too💖Enjoy and cherish your little baby. One day this will all be a fading memory, and your baby will still be your cherished darling. Best wishes!