Recently Diagnosed...Waiting for Treatment Plan

ange743

I am 45 and was diagnosed August 15 with IDC breast cancer, 2 lumps, almost 2 cm each, spread to lymph nodes and I have been a mental mess ever since. I am normally a very strong person, but this has crashed my world in a way only someone who has been there can understand. For the first 2 weeks, I just wanted to sleep all day, as then I didn't have to think. I barely ate. I haven't been able to go to work. I have done a lot more scans and tests and I know it hasn't spread beyond my lymph nodes, so that's a huge relief but I'm still sooo scared. Scared it will progress, scared of chemo, scared of surgery, scared it will come back, scared for my 3 daughters, everything. I meet with my oncologist on Monday to hear his recommendation, and though I want to hear it, I'm so scared to start it. It sounds like I will do chemo first, followed by a masectomy and lymph nodes removed on left side, then radiation. It's been almost a month since diagnosis and though my mind has improved somewhat, I can't dig myself out of this hole I'm in. I've talked with a social worker and it helped, but only short term. I have no enjoyment in my life right now, this is consuming my every thought. How do I find joy again? How do I not drive myself crazy thinking about it every minute of every day? How do I change to the positive kick a** mentality I need? I'm not sure there are answers to those questions, I need to just figure it out myself, but I guess I'm just venting to people who understand.

ceanna

ange, welcome to the club no one wants to join. You will find many people here who understand where you are now and will provide virtual ((((hugs)))) and some comments from their own experience which will help you navigate this diagnosis. I know this is a very difficult period--it's the uncertainties, waiting, and not having a plan in place yet. I'm glad you have already talked with the social worker and will have an oncologist appointment next week. It will be good to have a plan in place with some rough ideas of timelines, treatments, and what the future holds. Prepare a list of questions for the oncologist and social worker, and if your breast center has a nurse navigator, please schedule to meet with them and get their contact info. A nurse navigator is a wonderful help when you have questions, need support, and need referrals. You made the first step and reached out here--as you get more information, a treatment plan in place, and get underway back to good health, it will seem better. It's an emotional,scary time and we are here for you. Please feel free to come here often and vent, let us know how we can help, and how your doctor appointment goes Monday. These BCO boards are often a little quiet on the weekends, but I hope others chime in and give you ((((Hugs!))))) All the best to you. Ceanna

LaurenInPHX

I’m so sorry you are going having to go through this. Our cases are similar and I’m 7 years out so there is hope. A lot of it actually. I’ll tell you the advice that got me through my diagnosis. An advisor said “This is the biggest fight of your life. Say yes to it.” In other words, accept that this is happening instead of struggling against it and then fight like hell. I don’t know if that will help you, but it dried my tears in an instant and I was like “Bring it!” I am in a recurrence scare right now and I have the attitude. Say yes to it. I don’t have to like it, in fact I hate everything about it, but it is what’s it is so I have to accept. It’s the struggle that causes the misery. Sending peace and strength. Laure

Dalyce61

Recently diagnosed but waiting for next step and my head is reeling.

Sjacobs146

The time between diagnosis and the start of treatment is the worst part of it all. When I was diagnosed, a dear friend was near death from BC (she rallied and hung on for another year) so the possibilities were right in front of me. I spent so much time obsessing over stats, probabilities, mastectomy photos. I could not sleep at all. I did go to work and worked right through treatment primarily because it took my mind off of what I was going through. If you are really unable to function, get some help. There are meds you can take for anxiety and depression. See a therapist. Sending hugs your way, and strength

Moderators

Dear Ange and Dalyce - We're so sorry for the reasons that bring you both here, but really glad you found us.

Besides this wonderful thread and discussion boards, we would recommend you to visit our Resources for the Newly Diagnosed. You'll find some good info there that can help you understand pathology reports, weigh treatment options, and more. Also, filling out your Profile will help others see your diagnostic and treatment information (once you have it) and will help them answer your questions and offer the best support. To do this, click on 'My Profile on the top right of this page. Then click 'My diagnosis' and fill in your details. You can do the same for 'My treatments'.

Please keep us posted on how everything is going, we're thinking of you!

The Mods

Anonymous

You will find joy again--guaranteed--but right now it can't feel very joyful because you are fighting for your life. Personally I think it's too early to try to force your mind into a positive state. Everything is focused on survival, and that is your normal place to be right now. When you meet with your oncologist, be ready with questions. I think there is a list here on bc.org that suggests some questions to ask your doc. Tell them you are terrified and what you are terrified about. If they care about their patients, they should have some reassurance for you.

I was like you: simply, unequivocally, terrified of chemo, the chemo port, losing my hair, dying, not being here for my husband and daughter, terrified of everything in the beginning. After a few days of that, I called a friend who had gone through b.c. treatment and surgery 7 years before me. We went for a walk and let me ask questions about everything. She was so incredibly reassuring that a lot of fear about tx and survival was relieved. (She told me she loved her port--that made me laugh but I found after my tx ended I agreed with her!).

I found this website, and posted every day (sometimes more than once) about my fears, and b.c.org pretty much took care of the rest.

I also searched out all inspirational stories about women with positive nodes who were doing fine (years later), and that helped me realize I could do it too. One told me that lymph nodes were our filters, and that they did their job by "catching" the tumor cells without letting them get any further, and that thought helped. Getting a clear PET scan helped. My MO who was incredibly reassuring helped. Point is, seek out reassurance and stay away from doom and gloom because, in the end, b.c. is simply another disease (like diabetes, or heart disease) that can be treated so it never comes back again.

You'll be okay. Promise.

Claire in AZ

Sportymom

This is indeed the worst time as others have stated. I am a little ahead of you in terms of treatment as I am going through chemo. Once you have a plan in place and your treatment starts you will start to feel more in control, like you are doing something positive to get rid of the cancer.

Right now it is VERY hard to think positively so don’t put any pressure on yourself. At the beginning BC was the first thing on my mind when I woke up and the last thing on my mind when I went to bed. I was a mess and cried a lot. Even though I still have periods where I am blue and cry I find that by keeping busy it is easier to get through those dark times.

Like others have said, come back here anytime. We have all been where you are. I find that the support from others going through this or have gone through this immensely helpful. I have had ppl respond as soon as I have posted. We all care and want you both to feel like you are not alone.

Sending you tons of virtual hugs

JRNJ

Ditto. I was also diagnosed August 15 and feel the same way. I am having a bilateral mastectomy. I'm not afraid of surgery or treatment. Although I really don't want to lose my hair. I'm afraid it has already spread and I'm already stage Iv and I can't get it out if my head. My arm hurts and I have pain in my side. But the doctors would not do any scans because no sign of enlarged lympth. I have ilc which is sneaky and hard to detect. I've had 2 biopsy's 4 holes. The mri showed much more than the us. A large LCIS mass like 10 cm blending into a 2 cm ilc. It is all over not round at all. The first biopsy was grade 1. Lumpectomy they said. The second was grade 3 pleomorphic. It just keeps getting worse and worse. I don't trust anything they're telling me anymore. And keep thinking it's already done. I can't believe you can't get a pet scan! Or even a ct scan! With persistent arm pain and side pain. I've been reading and reading. And all I find is that arm pain(not surgery related) = stage iv. It especially hurt after the first mammogram. Couldn’t lift it for 3 days. I need someone to tell me it’s the tumor pressing on a nerve. But I didn’t find anyone chatting about this happening to anyone else.

ange743

JRNJ - I am sorry you are going through what you are, I totally get it. Before I got a CT scan and bone scan, I was 100% convinced it had already moved to my bones, as I have a weird back pain I didn't have before. I was very thankful to get the clear scans, but I still have a long way to go mentally. Please, please, try not to worry. I know that falls on deaf ears, but just try. If you're anything like me, I read so much online about worst case scenarios, and it was not good for my mind. I would continue to push for a scan, to put your mind at ease. For me, the unknown is much scarier than the known.

To everyone who took the time to read and respond - I thank you! I don't know if y'all realize how helpful it is to hear from other ladies who truly get the mental stuff that goes along with this. Because of your responses, while I was talking with my husband and nephew today, I laughed for the first time in a month!!! You all helped settle my mind enough for that to happen. I just hope those moments can come more often. Oncologist appointment tomorrow, so maybe once I have a concrete attack plan my mind will come along for the ride.

JRNJ

ange743. Thanks. I did push for tests and now we’re waiting for insurance. But it makes me doubt my doctors. And I also struggle with switching to Sloan as they are the best and I am close enough to do it. Although still far enough to be annoying. I don’t like also that they said no screening after mastectomy but others tell me they get sonograms. How do they know it’s in the nodes? Did they do a node biopsy? I won’t know til after surgery.

Sportymom

JRNJ: In terms of my experience they will not normally perform scans unless they suspect you are Stage III. I went into surgery with the BS and I thinking I was Stage I due to the size of my tumour and the fact that my lymph nodes were clinically fine. However, after surgery we learned that 4/4 sentinel nodes were positive for cancer. It was only at this point did they need to make sure it had not gone anywhere else; hence I had the bone and CT scans then.

Try not to go to the internet as it will scare you silly. While the internet can be a great resource, right now it’s going to make you crazy. You are in the worst part right now. The not knowing is horrible. Ange745 is right, once you have the initial diagnosis most ppl believe the worst is going to happen. The only thing I can think of to say is to allow yourself to be upset, cry when you need, scream when you need, and stay off the internet. Try to keep your mind busy with other things. I am so sorry you are going through this. It sucks. But know that we here on this board are with you all the way. Come back an any time to vent. Sending you plenty of hugs. Also, if you need to please don’t hesitate to ask someone for pharmacological help for your anxiety. I was on lorazepam twice daily for the first month simply to help meto function.

ange743

JRNJ For me, the radiologist saw an enlarged lymph node on the ultrasound I believe, so my surgeon requested a biopsy on it and it came back positive. So her plan is to take a bunch of nodes out during surgery, I'm not sure how many, as we haven't had that conversation yet. Then they will test them and see how many are positive at that time. I'm very thankful to live in Canada where we don't have to deal with insurance and the issues that go along with that. (Though we do have our own issues.)

Anonymous

JRNJ, consider getting a second opinion at a reputable cancer center. You'll have to request records and have them sent on (or what I did: I picked up copies of labs, notes, and CDs of scans, etc. and fed-exed them to the second opinion hospital myself, to make sure they were received). It can help you understand that you are getting the right tx for your dx, and if you aren't, you can switch to your second opinion doctors.

Claire in AZ

JRNJ

Thanks all! My lymph was not enlarged on mri. So won’t know until after surgery. I’m thinking I’ll wait to get second opinion until after surgery and after nodes are tested. Can you get pathology re-reviewe also?

Anonymous

Yes, the pathology and all scans/tests should be reviewed before you have your second op. visit; you'll most likely be asked for them to be submitted before your appt date. Usually (I've found) hospitals and doctors offices/cancer centers can get someone in pretty quickly for a second opinion, but I'd begin the process asap if you can.

Claire in AZ

msphil

hello sweetie we do know your feelings I myself was devastated I was planning our wedding out 2nd to the man I prayed for when I was diagnosed in like No. But had my cry got angry I was 42 in good health no history in family. Why me I asked myself well I now see I was stronger than I thought I'm a long time Survivor Praise God and have been able to Inspire lots of others going thru I pray this helps you also. msphil idc stage2 0/3 nodes 3mo before and after Lmast Got married just had 25th Anniversary. Thank God.then 7wks rads 5yrs on Tamoxifen. Hang in there.

Kalex79

I couldn't have said it better. I'm 90% on double mastectomy with reconstruction two weeks from today. I only wish it could be tomorrow. The waiting is difficult. I'm not upset about losing my breasts (double D - getting a but am scared of the surgery recovery. I'm not good with pain, and I know the atmosphere of pain management in this country right now. I've had two C sections so I know how long it takes to recover from major surgery. My mood is grim and the hours crawl by. I'm in Bay County Florida and we have no local support groups. Trying to avoid pity parties and spending money to make myself feel better

Moderators

Dear Kalex79,

Welcome to the BCO community. We are sorry for what brings you here and glad that you reached out to share your story with our members. We hope that you will keep us posted on the wait as well as the surgery and your recovery. This community can offer a great deal of support as you move through all that you are anticipating these next weeks. Let us know if there is anything we can do to help you to connect here and navigate your way around.

The Mods

Maryliz99

Just diagnosed with "Hi grade ductal carcinoma in situ solid mass encapsulated with micro calcification". following lumpectomy and five weeks of radiation 12 years ago. Symptoms now: right breast inflamed (very pink), very warm to the touch (like the breast had a fever), dimpled (like orange peel), thickened skin (feels like a dried out piece of leather), and itching. No lumps felt. Scheduled for surgical consult next week. Meantime, I have lots of questions. Not sure if this is the right place to ask, but here goes: From symptoms, my research shows this could be inflammatory breast cancer (IBC). Are hi grade ductal carcinoma and IBC one and the same? Is "hi grade" the same as "stage 3"? Does anyone know where I should search to get answers to these questions. Since yesterday, when I found out - by phone conversation with doctor, I've been scrounging all over the internet to seek information. Have found lots, but not answers to these questions. I'm sure my doctor will be able to answer, but that appointment is not until 8 Oct. So, trying to learn as much as I can before the appointment so I can have my list of additional questions ready. Scared and crying.

HopeWins

maryliz - I'm a little confused about the Just diagnosed and the 12 years ago statement. Are you saying you had DCIS 12y ago and now you're having the symptoms listed?

Grade 3/high grade DCIS is definitely not the same thing as IBC, if that's your question. I suggest a couple things. First, there should be some informational articles on IBC on the main bc.org website. Also, repost your question with a new thread on either the Not diagnosed but worried forum or the IBC forum if you're looking for folks who are familiar with IBC symptoms and/or find out if anyone else has experience with IBC following a DCIS diagnosis.

I know it's scary and waiting sucks. You'll get lots of support here. For what it's worth, I've read lots of threads about women as scared as you with lots of symptoms that they feared were IBC that ended up having an infection or some other benign condition, so try not to go down that rabbit hole just yet.

Maryliz99

HopeWins, thank you for your response and sorry for the confusion. I'll try to clarify. Twelve years ago I had right breast lumpectomy. I observed no symptoms at that time other than what the mamo showed. I didn't ask questions at that time, so don't know what kind of cancer it was. However, the lymph nodes were checked and they were ok. After the lumpectomy in 2007,did 5 weeks of targeted radiation to right breast but no chemo. Prescribed tamoxifen for 5 years. Had regular checkups and mamos every year since then...all clear until now.

On 5 July 2019, the red, itchy, orange-peel symptoms appeared practically overnight. Now, between 5 July 19 and today, and after mammo, ultrasound, two punch biopsies, MRI, another ultrasound, and finally last week, MRI-targeted biopsy with titanium clip inserted and then another mammo to be sure the titanium clip was in the correct position, I've been diagnosed with DCIS. Thank you for your suggestions. I'll go to the diagnosed but worried forum.