Newly diagnosed - worst phone call ever
Hi there!
My name's Jennifer and I'm 35 years old.
I'm brand new here, just found out 4 hours ago when my doctor called me at home with the biopsy results, so I have no information other than "invasive carcinoma". I was actually worried about a lump I found in my left breast when I went in to see my doctor last month. She said, "hmm" and sent me to the women's imaging center. They gave me a mammogram, with fine detail films on my right and then an ultrasound. The tech felt the lump on my left breast and thought it was a little weird but it didn't show on the mammo and she said, after doing the ultrasound on that breast, that it was glandular tissue. I was so relieved! And then she moved on to my right breast, took a few extra pictures of it, called in a coworker to look and I got a bit worried again. They told me they would be doing a biopsy on a spot on my right breast and it happened an hour or so later. It was uncomfortable but I still wasn't too worried because I was just so relieved about the lump in my left! They told me the results would be sent to my doctor within 5-7 business days.
I saw my family doctor yesterday for an unrelated issue and she showed me the written ultrasound results, which struck fear in my heart when I saw the words, "very suggestive for malignancy". She said she would call me as soon as she saw the results come through, I wouldn't have to make an appointment. I spent yesterday and today freaked out and trying to stay busy. Until around 7 pm tonight when my phone rang and my doc told me it was bad news. She said "invasive carcinoma". I asked her if there was any more information on the report and she said no. She also said she had arranged for me to see a general surgeon tomorrow (I live in a smaller town, the closest oncology center is 500 km away) to do some more tests, MRI, another ultrasound probably.
I'm scared, worried, trying to figure out when to tell my parents, family and friends, freaking out about aches and pains (even though I know they're probably from being so frigging tense and anxious!), doing my best to stay away from Google and trying to keep my mind off it. I've told my best friend what's going on but I'm so reluctant to worry my parents and sister. I'm more worried about them than about me, at this point. I know it doesn't mean much, but I'm trying to find hope in the US report as it said the nodule was very small, about 1/2 cm. I'm thinking my age works for and against me - I'm in pretty good health and fairly strong but am worried about reports that cancer in younger women is usually more aggressive. I'm also worried about being so far away from the oncology center. I know I'm going to be seeing an oncologist but I want to have the plan in place now!
I am so grateful I found this board. The messages I've already read have given me great information, comfort and made me feel not nearly so lonely. I know from messages on this thread that waiting is the hardest and I'm trying to be patient but it's so hard. Sorry this post is so long, I just needed to vent and tell the whole story. Thanks for being there!
Comments
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im so sorry jennifer.
i can tell you that the care in alberta has been very good so far. the more tests and exams they can give you before having to go to edmonton the better.
until the doctors have more pathology reports, they cannot tell us much.
best wishes
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Hi Jennifer,
I am so sorry about your recent diagnosis. It looks like you have great doctors where they schedule appointments for you to see the specialist. Some people in these forums have a hard time getting appointments to do biopsy or other procedure right away. So far you have been lucky. The tumor size is very small also which is good news. Write all your questions before you see the breast specialist. Maybe they can email you the results to see what type of breast cancer you have and you can research it before you see the doctor. I had a hard time deciding if I should tell my mom. Do your parents and sister live close to you? If they do, then they will figure out something is wrong. You don't need to tell them right away until you meet the breast specialist and get all the details. Good luck with everything. keep us posted.
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I'm so sorry about your diagnosis. I was diagnosed this time last year and I remember how earth shattering that call was. I held back information for a bit from my family too, but I had my husband to support me until we knew what we were dealing with specifically. I think it might be wise to tell someone in your family or a dear friend. You need a rock to lean on right now.
Also, it is really helpful if you can meet with a full team before you make decisions, not just a surgeon. Sometimes there are treatments available that can only be prescribed before surgeries. Mostly those decisions are based on the specific type of breast cancer, and it takes time to get pathology reports back. Our first reaction is to want surgery right away (at least it was for me) but sometimes taking a bit of time up front to weigh options is a wise decision. The doctors won't allow you to wait if they think it's not prudent so if they say it's okay to gather information, get second opinions etc. then you should feel safe doing so.
Hugs. These are your darkest hours but you will see the light again.One year later I am cancer free and putting all the pieces together again. You will find strength where you didn't know you had it. I'm sorry that you have to go through this. BC.org has been a tremendous support and information resource for many. Keep trying to take good care of yourself, and know you are not alone.
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Hi Jennifer. We're sorry your have to be here... but wanted to say welcome to the BC.org community.
The waiting is horrible, we all know, so come here anytime you need someone to talk to, we're all here for you! Until you have more information from your doctor, you may want to learn more about what is relevant to you right now, like your diagnosis, understanding your pathology report, questions to ask your doctor, etc. You'll find it in the section called Breast Cancer 101, from our main site, and has been designed for those newly diagnosed. We hope this helps. Best wishes and please, let us know how you're doing.
The Mods
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jenn, I'm so sorry to hear of your diagnosis, but I am glad your doctors are working quickly. I remember that call. I absolutely went to pieces as soon as I hung up the phone. I hope they have even more information for you today at your appointment. Ask for copies of everything: u/s, biopsy report, mammo, and put these in a binder. I found that really helped me when anxiety got the best of me. I could go back and look at the reports later and research the information provided on them. It will also be helpful when you're telling your family as so many automatically assume the worst case scenario.
Being physically fit will help. I found I bounced back quicker and exercising regularly helped with my mental health immensely. Your tumor is very small and that's great! Being young does not automatically mean it's the more aggressive types of BC. I was only 39 at diagnosis and my IDC tumor was less than a cm. they told me improbably had it for 5 years before we saw it on my first ever mammogram. (I too went in to problem with my left breast and we found the little bugger on my right side!).
Good luck at your appointment and testing today. Do not hesitate to ask your surgeon/doctor for something to help with the anxiety/sleeplessness. Xanax was a godsend for me as I could not shut my brain off long enough to think properly. Also it might be a good idea to take a friend with you to your appointments to take notes as you'll probably only remember about 1/3 of what they tell you. It will be better when you have a treatment plan in place. I promise!
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Hi Jennifer just wanted to send empathy and sympathyy because it's a huge amount to handle at our young ages. I was diagnosed last year at 32 years old and have just finished chemo. I still feel shocked and just try to keep moving forward. We will get there with as many women even young ones have!!!!
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Thank you very much for all your kind words!DayLily - I'm happy to hear treatment in Alberta has been good for you. My first impulse was 'get me to Edmonton' but yes, the more info we have before I get sent there is better.
new2bc and linzer - My parents live in BC and my sister is actually in Edmonton. I've decided I'm going to wait to tell them until after I meet with the doc today, hopefully he will have more information about the diagnosis or at least information on my plan forward. I called my best friend an hour after I got the call and she's already been great. Says she's going to leave her door unlocked for whenever I need to come over
Sunflowercat - thanks for the tip on getting copies of everything. I do find that the more I know about something the less I fear it, so I will definitely be going that route. That's crazy that we were both worried about our lefties but it was in the silly righties! Oh well, my left has always been my favourite anyway
Lauren32 - I feel your pain. Thank you for the encouraging words and I send them right back to you! I hope your recovery is going well and you're staying strong!
To the very kind Mods - thank you for the welcome and I will definitely visiting here often. You have all been so helpful already and there is so much good information on BC.org. I'm very thankful I have such a good resource in you lovely women!
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Hi Jenn, I just wanted to add my encouragement for you! Your situation sounds exactly like mine a month ago..and my name is also Jen!. It's a horrifying place to be, but you are right, being young (I'm 34) and fit is a big help. My Dr's said I did have a very agressive for of cancer. I said...good. Then since I'm young and healthy, give me the most agressive treatment possible. Luckily my team is composed of very type A men, and they agreed. You will have many options based on the tests they give you. Try to record your appointments or take someone with you if you can to help listen. PM me anytime if you'd like..sometimes it's good to vent!
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I had to chime in, as I'm another Jen with a surprise on the right side!
Hang in there. You are at one of the hardest stages right now, when all you know is that it's cancer. Once you have all the information and a treatment plan, you will feel a little more in control of the situation,and can begin to take action.
It stinks that you have to be here, but you will find so much support. ((Hugs))
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sorry u had to join us here but we know what your feeling, and we are here for you, hang in there once treatment plan in effect u will feel a little better knowingwhat to expect.msphil(idc, stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen) you and us all are in my prayers daily. I am a long term Survivor and know we can get thru this, with support and Inspiration. -
Thanks again for the encouraging and supporting words! I am really grateful you ladies are here! Thank you , Jen and Jen and Msphil!I had my appointment with a general surgeon in my local hospital and he has dealt with this kind of thing before, even though he's not a specialist. He was very kind, talked with me for a few minutes then gave me an exam then told me what to expect, surgery wise. Then he said the word "cured" and I burst into tears. He patted my shoulder, said he would get a nurse that specializes in this, handed me a tissue and ran away
. I giggled through my tears, just like a man to run away at tears! I know he doesn't really know what we're dealing with, anymore than I do, but to have him say that, it gave me such a shot of hope. Then he came back with the cancer care nurse and told me that he had told her what was going on and that he had run away when I started crying! She was great, gave me a hug (which made me start crying again) then sat me down in her office and we chatted for a little while. She gave me some encouraging words and then called a friend of mine to come pick me up. I have an appointment to see her again on Monday and hopefully I will actually be able to be lucid then! They did say that I will be referred to the breast health centre in Edmonton and will hear from them within the next week or so for an appointment for a consult. And then I spent hours with my best friend. After supper, I met up with my other best friend and told him what was going on. It was a tough conversation to have but he was great. I'm so grateful for my friends and the knowledge that I can lean on them when I need!The first half of my day today was pretty good, I was able to actually sleep last night, I would imagine I was pretty exhausted from the emotional storm! I kept pretty busy this morning, tried to figure out some things with my employer and watched some funny tv. Then this afternoon my mood went downhill a bit. Now that I know at least a bit of what is going to happen, I'm going to call and tell my parents and my sister. It makes me sick to my stomach. Like I told my friend last night, I'm not sorry that I'm telling them, I'm sorry that I have such a crappy thing to tell them. We've had nothing but stress in the family during 2014 and we were just all getting back to normal. I'm afraid I will start crying too hard to actually talk, which will just freak them out more.
I did take your advice, sunflowercat, and they prescribed me lorazepam, so maybe I'll have them standing by. Too bad I can't transport some to my family in preparation for the phone call! I am going to run on the treadmill for a while before I make the calls, try to get myself in a good mindset.
Thank you again for the support, I sure need and appreciate it! I'm sure I'll be back tomorrow or even later tonight!
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happy pills are a big help at this point in the road.
Also 1/2 cm is small. Depending on a number of factors, you may not need chemo.
Sounds like you are coping well.
Good luck! -
oh Jen - I'm so sorry about your appointment and all the stress, but it sounds like you have some pretty awesome friends! It's great the surgeon has a compassionate nurse. I wish the first surgeon I saw had one. He was awful and I totally flipped out in his office. Worst day ever!
I found exercise was really helpful for my mental health and quality of sleep,so keep it up while you can. As for telling you family...well nothing can prepare them for that call. I had to tell my husband over the phone because he was out of town on business and I wasn't going to see him until several days later on a trip to visit friends. My parents live out of state and I had to tell them over the phone. I felt so awful for my dad. He's a reconstructive surgeon and I'd be the second of his three children facing a life threatening situation. We'd been through hell and back after my brother was struck by a RPG in Iraq (he's alive and well, though handicapped). It just felt so unfair to put him through yet another health crisis. Maybe you can put together an email with the details to send them in case you're too emotionally distraught or have a friend there to take the phone and explain what you can't.
For now focus on the positive aspects. (I know easier said than done!) Your tumor is very small and like cookie said you may be lucky enough to get along without chemo. Mine was less than a cm and I didn't have to do chemo. I'm keeping my fingers crossed for you. {{{hugs}}}
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Hi cookie! I agree, happy pills are a wonderful thing And my friends have been amazing so far. I'm doing my best to look forward and think rationally about things but I, of course, find myself going a little crazy occasionally. But I've taken tips from what I've read here and have decided to be patient and forgiving with myself. If I need to sit and cry for a while, that's what I'll do. If I need to sit and laugh with my friends, then that works too. Thanks! -
Oh Sunflower I'm very sorry to hear about your brother! I can't imagine the stress that must have been and then to have your diagnosis shortly after must have sucked! I feel the same way about my father, actually. His brother passed away in December and he was just finding peace with that when this all started with me. I did call my parents last night and tell them what was going on. They were shocked, of course, but also very hopeful and calm. By the end of the conversation, my Dad had a plane ticket booked to come see me and my Mom (who is unable to come here right now) was making us all laugh with her stories of stupidity at her work. I'm sure that they had a little cry after we got off the phone but I know they are going to be my rocks in this.As to your surgeon, that's horrible. At least my guy knew that he couldn't handle my emotions right then and got me the help I needed. It boggles my mind that your first surgeon wasn't able to deal with that. You would think dealing with emotional patients and having a good bed side (or even desk side) manner would be a very important part of their job! I have a feeling I have been very lucky so far. Everyone I have spoken with, from my HR contact at work through to the health care folks have been great. Fingers crossed, I don't run into anyone like you did!
I hope that you're recovering well from your recent surgery and hugs to you and your family!! Thanks
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Dear Jenn,
I'm not surprised that your parents took in this news as hopefully and helpfully as one could expect. After all they raised a daughter like you. I must say you are coping as well as anyone can be expected to cope. This is probably the turning point of your life and that's not to say turning to the bad, but the point at which you receive the first message of mortality.
I've been diagnosed twice over the last 15 years, and nothing, NOTHING, compares with the shock of the first diagnosis. It's as if the whole world quits turning for a while. Then, life goes on--different, but good. I certainly do not look back on the last fifteen years as bad--they're just the new normal.
Hugs from me to you.
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Another Jenn here! So sorry about your diagnosis, but glad you don't feel so alone having found this forum (I feel the same way). It's so great to hear how your doctor and the nurse took care of you. Sounds like the right people to be with you at the right time! I totally get the changes in moods (I'm still waiting for my biopsy results). I'm encouraged by hearing how positive you're staying!
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Thank you very much, WinningSoFar! I really appreciate your message. I've always known that my parents are amazing, strong people and this has just re-enforced that opinion. And yes, you are absolutely right that this is the first real shot of mortality I've had. It has definitely rocked me off my foundations. But, if I carry that metaphor along, I'm trying not to view this as a massive earthquake, just as a little trembler. It is very hard to do that sometimes but I am taking it hour by hour and calling for help whenever I need it. Asking for help has always been fairly difficult for me but my diagnosis has made me throw my pride to the side.I can't imagine the shock of being diagnosed twice. You are incredibly strong and I am so happy to see that you are presently NED! That's wonderful! Thank you again for your message and big hugs right back to you!
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Hi Jenn! I'm sorry that you're here but glad you have also found this wonderful place. The ladies here are awesome (as you know) and the information they provide has been invaluable to me. I'm sorry to hear that you're waiting on results, that is a horrible, horrible time. I have found that the busier I stay, the better it has gone. But at the same time, don't be afraid to sit and stew and maybe cry for a while. I've got a few really close friends who have been amazing and I have taken advantage of any other resource available to me. I have an appointment this afternoon with the cancer care nurse at my local hospital and I'm expecting to cry on her shoulder a little but also to be able to get a lot of good information from her (my questions are already written out!).Thank you very much for your message and try to be strong and positive but don't be afraid to lean on someone whenever you need it! Spending time on the forums here has helped me out immensely too. I'm hoping so hard for you that it turns out benign!!!
Hugs to you!!
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Jenn, just wanted to say that I am sorry that you were diagnosed with this beast so young. To all of "the Jens" may you all be NED for the rest of your very long lives. I just get sick when I read that someone in their 20's or 30's or even 40's is diagnosed! Hugs and strength to all!
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Thank you very much, April! I am still in the starting stages of this process but the help, hope and hugs you all have sent have been so much help!
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i am so sorry for you and as we all do know what torture it is to wait for results. my surgery was only supposed to be a cyst removal and was then called 3 days later and told it was cancer and then had to have a second surgery and waiting for lymph node results was horrible ( had a little help from some xanax which was great !!) and then had to wait for mammoprint results to determine if i would need chemo . sounds really good the tumor is small . I was so emotional feeling really good and then just having a meltdown over something small. take advantage of the resources out there and hang in there!!!
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