Diagnosis confirmed yesterday and barely keeping it together :(
Pathology results came in yesterday and confirmed what the surgeon had already told me to expect. Medium grade cancer in the right breast. I have multiple small lumps, all 5mm or less. He has recommended a mastectomy, followed up by chemo. That's about as much as I know at this stage. Tomorrow I have to make a decision about surgery and I really have no idea.
Unfortunately the surgeon I have dealt with to this point is now away for 2 weeks.
He has given me the options of seeing another surgeon "locally"; I live in a small rural town so local for me is 2 and a half hours drive each way;
travelling to a bigger city; 6 hours or more each way from home; I'm not keen on this option as hubby would have no support;
or waiting the 2 weeks until he is back.
He has said that in his professional opinion a 2 week wait will not make a great deal of difference physically but emotionally will be very tough. Yesterday I was thinking I would be able to wait out the 2 weeks but I had a very "wobbly" day today and now I'm not so sure. This surgeon is reputed to be the best in the district and I do feel comfortable with him but emotionally I just don't know if I will cope that long. Will see a local GP in the next day or two to get all my results and will get a call from my breast care nurse in the morning. Will discuss my options with her but I'm feeling so unsure. Thought I was mentally and emotionally strong but not feeling it today.
Thanks for "listening".
Comments
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Hugs, hugs and more hugs! It's a tough choice, and we're sorry you are in this dilemma! We're all here for you. We know those days!
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I suggest using those two weeks to see an oncologist. Get your hormone status, HR2 status and oncotype. Information has power. You may want to do chemo first, maybe not, but know your options. I waited a month after diagnosis to see doctors because it was summer and people were on vacation. It was very hard to wait and I needed antianxiety pills. We did fine going out of town - it's about a four hour drive for us.
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I echo Grace's post above, and as for surgeons: go with the best one--do some research, see if you can talk to some nurses, the ACS, or perhaps others who have had the same dx near you and used this surgeon or the other.
I say that because YOU ARE WORTH IT. You are hiring, in effect, these experts to care for you. They are your employees; you are paying them (with your insurance premiums), and all treatment is temporary and lasts a few months. You can do anything for a few months, even travel longer distance to get the best care.
I drove 1.5 hours rt to be treated by the oncologist who came the most highly recommended even though I had a cancer center just up the road from me. I did the same for the radiation I got, and drove that distance 5 days a week for 6 weeks.
You deserve the best and sometimes we only have one shot to kick this stuff out of our bodies forever. Get the best, no matter what it takes, if you at all can. Call in friends/family, etc. for driving help if you need. But my tx lasted, overall, less than 9 months. And I'm SO glad I went with the highest rated medical care and personnel.
Hugs.
Claire
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Thirding Grace's advice, both the "consult oncologists" and the "consider anti-anxiety medication".
Simply doing something, anything, about your diagnosis, prognosis and treatment plan will help allay your anxiety.
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I'm so sorry that you have been diagnosed and that you are facing this dilemma so soon after hearing the news. I had a core biopsy done on May 15th and didn't get the results until May 22. Then I got referred to a major cancer center that wouldn't see me, and referred back to my family doctor, and then referred to the Regional Cancer center which turned out to be a blessing. I saw the BS on May 29, and had surgery on June 8th. My BS told me the same thing as yours, a few days wait will not affect your physical status, but it is so so hard to wait. They all know that. I was so fortunate to be working on a very busy project. I filled my days with work, and my nights busy with my kids activities. All the best, strength to you. You have joined a very helpful and supportive group.
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You've been given excellent advise by grace and claire. Not sure how the surgeon can be sure you even need chemo without an onco test and a node biopsy. Oncotype testing shows many of us can skip chemo altogether. I too left town to be treated and had my surgery and onco advisement done at a breast cancer center, rather than using a local surgeon and oncologist-I did have my radiation done locally as that is a daily thing. I think the out of town trips were worth it and continue to have follow-ups in the city at the breast center.
This said, 2 weeks is not an unusual wait time for surgery. By the time I got all my surgical opinions (3) and met with an oncologist and had genetic testing to help decide if a BMX was in order (all recommended this if BRCA positive and knowing could save one from having a second surgery) I didn't have surgery until 1 1//2 months after my diagnosis and all, including my onco, agreed there was no big rush/that knowing as much as possible would help me make good choices.
As for holding it together-it's okay to fall apart-really! Be easy on yourself. This is a scary disease and diagnosis and I think all of us have had days when we just don't keep it together.
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Another thought I had is for you to see a plastic surgeon too. The cancer surgeon is not concerned about your reconstruction (if you want one) or about leaving your chest smooth if you don't. You don't want to do a second surgery in two months because you have lumps and bumps in odd places (under arms-happened to a friend of mine). You might want a tissue expander placed at the time of the MX. Find out your options. Don't panic and take your time to find the best path for you.
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take a deep breath sweetie, i know its alot to take in now, i would take the time to get 2nd opinion, and stay here with us for support and Hugs!!!!!!, once plan in effect u will not feel so overwhelmed, i had chemo first then L mast, then chemo again and Praise GOD im doing great, in my 21 st yr, Survivor. msphil(idc,stage 2, 0/3 nodes, L mast, chemo and rads and 5yrs on tamoxifen) -
Chooper, welcome to Breastcancer.org! We hate that your here, and sorry for your diagnosis, but we're really glad you found us. You're not alone, and you're sure to meet many others here who know exactly how you're feeling and can give you much great advice on how to move forward.
Welcome again and please continue to let us know how you're doing!
--The Mods
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Thanks so much everyone for your warm welcome and support. Has taken me a while to find the strength to get back here. Everything seems so overwhelming and it really is a grieving process. Though I consider myself a kind, caring and empathetic person you really don't begin to understand the "weight" of a cancer diagnosis until you receive the devastating news yourself. Have taken my time, done my research and have chosen a surgeon I am happy with. My consult with him is this coming Thursday, the 1st of October. I have dark moments when I just sob and sob but I try not to dwell in that dark place for too long. Have been keeping myself busy painting the kitchen. So grateful for my precious hubby who has been amazing. Hope everyone else is travelling ok.
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Smurfette, keeping busy now is the best. Sounds like you have a plan and such so now, well do something nice for you to help to calm your nerves and keep you occupied. So when was your last mani pedi? but you need one
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Hi.Could you tell me breast cancer surgeons name at Memorial Sloan as I too am looking for one there and am really scared and want to make best choice.
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Dear elisarus, Welcome to the BCO community. We are sorry that your situation brought you here but glad that you reached out for support and information. Please let us know how else we can help you. The Mods
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My advice would be to get to the closest university teaching hospital ASAP. You don't have to be treated there but you would want to get their diagnosis and treatment plan. Please believe me when I say that getting a second opinion there will be half the battle. Get someone to stay with your DH. You are just as important and you want to be healthy so you can continue to care for him. As women we sometimes put our needs last but this is very important. Take care and good luck!
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hello sweetie, most of us know your feelings for sure it is overwhelming,.iwas diagnosed while making wedding plans, found my lump, i had my cries, its good to let go,then decided to fight for my life n for my soon to be husband who was amazing, i am now a 21yr Survivor(Praise God), n married 21yrs now, got married between chemo n rads, keep Hope.msphil(idc,stage2, 0-3nodes, Lmast, chemo,rads, 5yrs on tamoxifen)
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Smurfette26, I had about a 4 or 5 five week wait between diagnosis and the start of treatment. During that time, I had genetic testing, breast MRI, PET scan, and probably other things I'm forgetting. I saw my PCP, a breast surgeon, and two medical oncologists. I know you are reeling and trying to wrap your head around this diagnosis but taking some time to read a little bit and talk to several doctors may help you in making any decisions. I did chemotherapy prior to surgery and some people do surgery prior to other treatment (and some don't need chemo or radiation!). It will depend on the type of cancer, your risk factors, etc. I would recommend trying to breath and get information about your specific case from people who can see your records (i.e. your medical team). Sometimes reading general information online is misleading because the cases are completely different from yours. You will definitely find lots of support here on these boards! Use us.
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Sorry that you have to be here, by reaching for help, you've already put one step forward. I've been diagnosed in June this year. It is overwhelming at the start, and it could be throughout the whole journey. Your life is turned upside down, new medical terms, insurance paperwork, choices, questions. It is okay to be scared. But we need to cope. That's the end goal. Coping with life so cancer does not affect our quality of lives.
Other than the advices on seeing both onch, and speaking to a psych (I'm speaking to one now and it helps a lot), I would suggest seeking support from your friends and family if you haven't. And reading up and being more informed about your condition might help too. Overwhelming at first, with knowledge comes better understanding, and lesser unnecessary guessing and sleepless nights.
Do keep us posted on how things go. Get in touch if you need a support to get through till you get to the next step.
I'll keep you in my prayers. Hang in there.
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Smurfette: Welcome to this supportive place. I am new here, too, so others will have better practical advice about research and treatment options, but wanted to send big hugs your way. Everything you said is also true for me: the weight of a cancer dx is so heavy when it's you.
I have a part-time job rather than fulltime now and am finding I am not busy enough to keep my mind off this to lessen my anxiety. Can I help you paint your kitchen? Have always dreamed of living in a rural community, but have always lived in suburbs or city.
Please keep us posted, and good luck tomorrow. With you all the way.
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Yesterday was a long day. Up at 5.45am. Left home before 7am and didn't get back until 8pm but the day was positive and while it left me tired; I was also upbeat. Surgical consult went well. Feeling happy with my choice of surgeon and my treatment decisions thus far. My mastectomy is next Friday the 9th of October. So scared about the surgery but just want it over. After my appointments hubby and I met up with my son, his partner and the grandkids for lunch. Did some shopping, then got a haircut. Was a lovely afternoon. Thanks for the support and encouragement. Keep smiling all.
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I got the same diagnosis on Sept. 16 over the phone also. I had no clue, mine is nonpalpable ( no lump they can feel.) On MRI it measues 2.1 and so far I have had two mamograms, MRI with contrast, and a surgery consult. I will have mapping done on the 21st, a radiation seed planted in the turmor on the 22nd and surgery the 23rd I was assigned a nurse as a support person but I can never get her on the phone so I am in my second week of searching the internet for answers. My house of 22 years burned to the ground this past April 10th so I am in a new state and left friends behind. I am a widow with my dog as support. Do you have family for support? I was told i am having a lumpectomy unless he sees reason to do a mastectomy when he gets in there. Mainly because I live alone, have a bad heart and could also have cervical cancer. I am awaiting tests to get those tests and thenwait for those results. Since its invasive ductal carsonoma I don't want to put the breast surgery off. I am a newby too. Let me know if you need to talk, but thats about all I can do I feel lost and searching for answers too.
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Sorry you have had to join us here Waterstreet. It's terrible that you can't contact your breast care nurse. It's good to have a rapport with your nurse. Maybe you could request a different nurse. I realise they have a busy job but should be able to call you back if she is with another patient. I have found the support from my assigned nurse very helpful. She routinely calls me every few days; especially if she hasn't heard from me. My nurse has sent me lots of literature, relaxation CD's and has provided me with so much practical information. Small things that I may not necessarily have thought of. My heart goes out to you. You have had a very tough year. I have 2 dogs and they are wonderful company. I'm fortunate to have a hubby who has been a fantastic support but sometimes I need some time alone with my thoughts. I have been getting lots of messages from friends and family and reply when I feel up to it. I find phone calls are often difficult and I sometimes put them off. But that's just me. Have you anyone you can lean on for support? A sibling or friend who may be able to come and stay with you for a short while? You will find lots of information, support and caring here. Keep in touch as and when you feel up to it. Hugs Donna.
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Thanks for replying. I have a very busy daughter-in-law, she is in college and raising my three grandchildren. My grandchildren are all in after school activities and I don't want them to have to give up their activities. Plus they have to be dropped off at school and picked up. I pick them up two days a week when my daughter-in-law has late classes. She has told me she will drop her classes to help me if need be, but I don't want her to. My son is overseas and not be back till December of this year, so my daughter-in-law is on her own with three kids, I don't want to impose. She is taking me to surgery and picking me up. She wants me to stay with them right after surgery. I will do that. They have a small house and I don't want to stay long because it just doesn't work. She is keeping my dog until I can handle her again. My dog has the tendancy to walk me not me walking her, if you know what I mean. She is a rescue dog I took in to keep her from being put down. I keep reading that if they remove anything under your arm you have to rebuild the strength in the arm. So that concerns me with Precious (my dog).
So much of this is not knowing how your body will react to the surgery and the radiation & chemotherapy. I visited the MAYO Clinic website and I bought a book from them and I read the book this weekend. I may have to much informtion now, but I got alot of answers I needed. I will focus on that. The book doesn't cover much personal experience and I guess that is why I am utilizing this website. I have talked to the doctor once and will not see him again till the day of surgery. I wanted total mastectectomy but he said he felt a lumpectomy was best so that is what he scheduled. I am on Medicare so I don't know how they work with surgery, etc. That is where the nurse was supposed to help. I will research Medicare online today to see what I can find out. I will tackle my biggest fears first. I have had several surgerys in the past with good private insurance and ended up paying thousands of dollars back that were my copay. I don't want to live like that ever again, working two jobs and living off one while paying off hospitals nd doctors with the other. This is my biggest fear, not the cancer. I can make it through this, I have had my small intestine strangulate twice, thus that equaled two major surgeries. I learned how to care for myself then, I was alone for those but lived where the yard was fenced and I could just let the dog out and then let her back in. Here I have to physically put her on a leash and walk her. She is learning how to adapt to city life, she had 10 acres where we lived before.
Thanks for allowing me to vent, I promise not to post when I am depressed again.
Are you getting the mapping where they mark where your tumor is? I am also getting a radiation seed implanted the day before my lumpectomy surgery. I have yet to meet with the radiologist. He will be doing the implant. Then I meet with another radiologist who will set up the radiation treatments. I just wish it didn't take so long to get it all put into action. With my other surgeries I went in through the ER and they had to be done immediately so there was no waiting or planning to it. I have this week off, I have no more appointments until net week. Then the surgery is the 23rd. It is an out patient surgery. I CAN do this.
Take care I am praying for you. Later.
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So glad you have your Daughter In Law to support you Waterstreet. Things are a little different here in Australia so we don't have the same financial stress at such a difficult time. All treatment provided in a public hospital here is covered under Medicare. I did have a small gap to pay when I saw the surgeon in his rooms but that has been my only expense. Had my pre admission checks today and my mastectomy is tomorrow. I'm feeling very anxious. It maybe a sleepless night but by this time tomorrow my surgery will be over. Wish me luck.
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Hope everything went well for you, let me know. Your in my prayers.
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I to have just been diagnosed and can not believe this is happening to me. However , it is. So I try to control my thinking to be strong and positive.
I have also had issues with doctors and waiting so I have been aggressive and called everyone directly to get answers. I am not being shy and I don't care what they think. It has worked so far.
I do have a question as to where the money for breast cancer goes. Patients should not have any wait time, i.e. Labs closed on weekends, doctors away etc. I am sure their is enough money collected to ensure the patience does not have to wait.
I wish you all the best. Keep busy, eat chocolate and drink wine. Also be assertive with getting into doctors offices.
Good luck.
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Thank you Waterstreet. My surgery went well and my drain came out on Friday. Just a little tender but not needing strong pain relief. Find I get tired from not doing very much. Have to remember to pace myself. Surgeon called me on Thursday night as he had some of the pathology results in. As is often the case with ILC the tumours were bigger than they appeared on the imaging. I was expecting this. He got good surgical margins. I have a multifocal cancer and 4 "lumps" were positive for cancer but they were all low grade. He removed 4 nodes and one of those was also positive. The specialists are meeting to discuss my treatment plan next week but looks like it will involve chemo, hormone therapy and probably radiation as the combined mass was larger than 5cm. My HER2 results are not in yet. Will know more after my appointment on the 29th. How are you going?
Sorry to hear of your diagnosis Two2up. It's a very frightening thing to have to deal with and the beginning is the worst. Stay positive.
Hugs Donna.
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Gosh Smurffette26, you sure are going through a lot. I will hit the ground running Wed. and finially have surgery Friday, busy week but thank God I have finially made it this far. Time has been creeping. I had a surgery last August 2014 for a strangulated Colon and I was in recovery 15 hours because my heart decided to act up I am praying that will not happen this time. Praying your results come back fine.
Sorry you have to be going through this Two2up, it seems like a world of waiting. I have been waiting for a couple of months to get this far. Hope all goes well for all of us.
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Well mapping was done today and surgery is at 8 in the morning.
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Well I made it through the surgery Friday, thank God its over. I have not kept meds or food down since surgery so BS took back the pain meds. He gave me a pill for nausea that didn't work. He threatened to put me on IV Monday.
I was called yesterday to go get my oldest grandson from school, he was running a 102 fever. After I got him home I made him some chicken soup. I got out the crackers as I normally do and decided to try one myself and it stayed down. So I am enjoying crackers with my meds and they are staying down. Food is not staying down well yet. Today got a call to go pick up my youngest grandson from school so my DIL came home and we took them both to their PCP and they have strep throat so I had to pack up and move back to my house today. I am praying none of the rest of us get strep. DIL is not going to her classes so I don't have to risk catching it.
I have to go for a US of my kidneys tomorrow and I don't like how one area of my incision is looking so I am going to get it checked out while I am up there.
Praying for all of you, hang in there. Hugs to you all.
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Hi, Smurfette. I just wanted to send you lots of hugs. All this waiting is the worst. I hope I can get my head wrapped around this business. Reading through your posts is helpful - at least it's not just me feeling like this.
Thinking about you and hoping everything is ok.
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