I am scare, please help ..

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Hope99
Hope99 Member Posts: 148

This is my first topic in this club, and I hope to find answers to all my questions please, I'm scare and I have no idea what should I do during these wast time.

when I took the biopsy last month (after mammograms and ultrasound test), the result was shockd me, I've SBR grade 3 , IDC breast cancer. with pr+,er+ and her2 - ( doctor said that result not 100% , may the receptors will change some how)! and auxiliary node 1.3 cm .

is this kind of breast cancer aggressive? I read many research about it, its related to the receptors, how much is fast to grow on me. any idea?

and what if these cancer goes to liver or bone (some one told me that you can treat if you are in the beginning of stage 4, is that true?)

. is their any chance to treat my body? I am scare, I have children and I want to stay alive to protect them.

its better to have +pr,er+,her2- or this increase the tumor of my breast?

waiting you

Comments

  • Yaelle
    Yaelle Member Posts: 53
    edited November 2017

    Hey Hope,

    Most important is to keep calm (as much as possible) and have faith. I was diagnosed with IDC beginning 2015 with PR+ ER+ and HER2- . Being PR+ & ER+ means that hormonal therapies and targetted therapies can be used. In my case, the score for PR and ER are quite low (currently 3/8 and 4/8). Nevertheless I've been on hormonal therapy since the surgery. So far it helped limiting the mets to my skin (breast and abdomen). But I had to change therapies several times, and this will probably be true in the future too. Cancer cells are performing mutations, which means that treatments need to be adapted. As my oncolog would say, even when it is not possible to totally get rid of cancer, it is possible to live with it. And that's what I'm doing.

    As such I don't think there's a link between the scores PR/ER and the agressivity of cancer. Although I read somewhere that HER2+ are more agressive.

    You surely need to be positive : A lot of women I know are in remission, or even got rid of cancer.

    I send you lots of love and strength

  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    Hi there. So sorry you have to be here but welcome. I know you will find this community both comforting and full of knowledge. You are in the worst part of this journey. The beginning is horrible. I promise you will feel better once you have all the facts and a treatment plan in place. The best advice I could give you at this point is to make sure you are treated at a major university teaching hospital. Where you get treated is a huge piece of this puzzle. It is hard to answer any of your other questions until you have surgery. Good luck and keep us posted. We are all here for you...

  • Sd2906
    Sd2906 Member Posts: 35
    edited November 2017

    Hope99,

    I know this is scary and this generally sucks. My wife and I had our world rocked upside down by the diagnosis in August and every day since has alternated between fear/sadness and relief/comfort. Happier moments have been few and far between. We also have children.

    Receptor status may change. It did for my wife, more negatively I’d say. But it just depends. Cancer tumors are heterogenous and so it’s hard to classify them.

    Grade 3 is aggressive. It’s a well differentiated, rapidly dividing cancer so that is always a tough thing to swallow. We had the same diagnosis. On a brighter note, chemo was built for aggressive cancers so it’s likely yours will respond well to treatment. That’s the main upside of high grade cancers. Treatment options are built to fight them. So it’s possible you could be NED sooner than you think.

    Positive receptor status has its pluses and minuses. Pluses include horomone treatments and minuses include it attaches to hormones. Her2 negative has generally been considered a positive diagnosis but triple negative is not. It’s pretty mixed.

    The doctors will check for symptoms to see if it’s spread to determine staging. They will look at your chest wall, other breast, etc. when they run more scans. Very few cancers are stage 4 de novo so you have good odds on your side. It is in your nodes but hopefully it hasn’t spread past the auxiliary and that’s quite possible. You’ll learn more soon and the waiting is the hardest part. Quoting Tom petty here, RIP.

    We think about spread all the time. Chemo is designed to kill cancer cells around your whole body. So it’s very much a total body treatment plan and that’s partly why it’s such a tough treatment. It’s very likely if it has spread, chemo can kill those damn cells.

    It’s ok to be scared, ok to cry, ok to feel hopeless. Just don’t let it overwhelm and dominate you. As I said, your odds of beating this are absolutely on your side so you will very likely be fine. Try to stay positive even though I know it’s easier said than done but do your best. Lean on friends and family. That’s why they are there. Kiss your kids a lot. Seems to work for us :).

    Best of luck. PM me if you have other questions. Try to have a good thanksgiving. Sorry for what you’re going through. It just fkn sucks.



  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Hello and I am sorry about your news. Right now my advice is to not worry about it being aggressive. You have plenty of time to learn more and figure out a treatment plan that will give you the best possible chance of success. To do that you will need to get a copy of the biopsy report and meet with a surgeon, preferably a surgeon who specializes in breast cancer, to answer your questions. But, ER and PR + is generally a good thing since it means hormone therapy in pill form would help. Chemotherapy and/or radiation will also be discussed with you once your doctor sees the biopsy report.

    Unless your lymph nodes are involved and your surgeon specifically mentions it as a risk, try not to worry about spread to your liver or bones right now. Most women with breast cancer are treated effectively and live a long time! We wish you all the best and come back with more questions any time.

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    hello Yaelle,

    do you mean that the percentage of your hormon is less? in my biopsy report I found it as a percentage, not a number like you .

    according to my little knowledge, mets mean you are in stage 4? is that true? because I found in your signature grade 2, not 4 . can you explain this point please?

    I hope we will be fine, and I have no idea if the research is true or not about the HER2+ and the increasing of tumor size and spread.

    thanks a lot dear..

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    hello dtad

    I hope you are right, I feel so so bad, and I'm afraid to much, feeling lost and cry all the time and I'm worry about spread because I'm late, more than one and half month after biopsy report

  • Yaelle
    Yaelle Member Posts: 53
    edited November 2017

    Hello Hope,

    I know there are indeed 2 ways of calculating hormone receptors, under which one in %. Where I'm treated, they only handle the other methodology, and I'm not sure whether we can simply proceed with calculation to perform an evaluation in %. But indeed, the higher the figure on /8 , the better response on hormone therapies.

    As far as grade / stage are concerned, there is a difference.

    The stage determines the way of "dispersion" of the cancerous cells (the lowest the best). I'm currently in stage IIIC as I have metastases in my skin (some indeed consider this as stage IV, however, as they are limited to breast and abdomen, we can consider this IIIC according to my doctor).

    Grade defines how agressive the cells are : the lowest they are, the more "calm" (slow) they are. I just learned today, by discussing with my doctor, that although the first biopsy mentionned grade II, the biopsy done after surgery (which is more accurate that the first biopsies) showed grade III (which I couldn't find back in the reports I received).

    If this can reassure you, between the first biopsy (I needed 2 as the 1st one was negative) and the chemo, more than a month passed. I had planned holidays, and doctors all said it was better to enjoy these weeks abroad, than jump into treatment. They were right : our mental strength is the most important thing in this battle. So, don't worry if you didn't start immediately treatments.

    I'm sure we'll be fine :-)

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    hello sd2906 ..

    I read in my biopsy report poor differentiated, not well differentiated as you mention in your replay.

    I cry too much yesterday, most of the people told me its better to be positive, if you feel sad you will die as soon as possible .

  • Icietla
    Icietla Member Posts: 1,265
    edited November 2017

    Hope99, what type Doctor are you going to see next? When is your next appointment about this?

    You have every right to feel bad, to feel scared, to feel angry, to feel everything you feel. You have had a very bad shock. A breast cancer diagnosis is always devastating. Remember, the Close Ones in your Life -- those who love you -- are also afraid and feeling helpless. They are suffering that way because of the severe stress that you are suffering. They wish you did not have to feel so bad, and they feel helpless to help you feel better. We all know those fears that come with a breast cancer diagnosis.

    No, being upset about it is not going to kill you. But keeping hopeful -- and remembering that there is always cause for hope and happiness -- makes for a smoother ride, much better times, and it is also comforting to the Close Others.

    Dear, when you have your treatment planned, you will feel much better, much less anxious.

    Please keep us up on your news, about your appointments, treatment plans, all that.

    (((Hugs)))

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    Hope, mine said poorly differentiated too. But it is only a characterization not to be confused with outcome. I am 6 years out with no sign of cancer returning.

    I was crying alot too in the beginning. It is the not knowing what the future holds, I would let out your feelings and get an anti anxiety medicine to help you relax. I was taking lorazepam for about 2 months. Once you get the cancer out and start treatment you will be better.

    I have 2 work friends both stage 3C many positive nodes and grade 3 both are doing well. Minh is 20 years with no signs of cancer and Anne is approaching 15 years.

    Also there are BCO stage 4 ladies here doing well. The odds are with you.

  • voilalia
    voilalia Member Posts: 41
    edited November 2017

    Hope, it is so normal to feel scared and freaked out when you have the bad news and you don't yet have a treatment plan in place. I was diagnosed in July with IDC ER & PR+, HER- as well. And I have lymph node positive for cancer too. Docs holding off on Stage (it's either IIB or IIIA). Being in my lymph nodes was the scariest for me because of what it means about cancer cells having access to the lymph system and blood stream. Definitely scary stuff. I think we're conditioned from movies, TVs, novels, etc. about the drama of the death threat yet there are far more positive outcomes than negative because of how much better targeted treatment is based on all of the factors that are understood now - better than even 5 or 10 years ago. The survival rates are really encouraging and I hope you can find that information to help balance the totally understandable fear you (and we all) feel.

    It does get more manageable! And it's still a hard road. My doctors agreed that I should have chemo before surgery, so I started chemo in the middle of October - I was diagnosed in July. I specifically asked if it was okay for the delay. Some was on their part and by September I wanted to travel east to see my son first. But I started to feel the tumor grow and was more painful, but they were certain that it hadn't and was fine. I started chemo in the middle of October and the good news is that after even one full round of chemo, the tumor started to shrink, and after 2 rounds, it feels SO much different! I can only hope that the chemo is doing as good a job with any renegade cancer cells that might have taken a ride through my bloodstream. They are undetectable when they are just single cells moving through the body but no growing and multiplying, so MRIs and CT scans and bone scans won't find anything on other parts of the body. Thankfully, nothing was detectable. I know that the chemo is going after the tumor and ALL those other cells I don't know about - and yet it's still scary to think one little cell might survive and do its worst after chemo. But that's just fear speaking, creating only one possible made up future that I don't need to worry about. Stress is not good for this healing process, so find ways to relieve your anxiety. I hate taking medications, but been okay for the time being with Ativan - sparingly and as needed. I also take a natural supplement (mix in water) Natural Calm (magnesium citrate), good for magnesium intake, over time has definitely helped with anxiety, and mega helpful during chemo because a slightly larger dose also helps with the side effects of constipation. (you don't need to know more about that right now, but there's plenty of advice available in these forums for each step of the way!)

    It's good you found this support forum - it's full of hope. So many women before us are living healthy lives and are on the other side of this nightmare. I found a group that started chemo the same month I started and it has helped me SO much to be able to help each other through our common experience all happening at relatively the same time. I recommend when you know when you're starting chemo to join that month's forum (or start it if no one has started it yet.)

    Wishing you all the best. You are not alone! One of my October forum sisters is managing this with a couple of young kids. Hard but doable. Learn to say yes to the help that people around you offer you - that was really hard for me to do. But it helps them and definitely you!

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017


    Hello Georgia1

    really I feel bad, I try so hard to forget the bad feeling but i cant. specially when I remember my grade is 3 and my appointment delay more than 7 weeks without treatment plan , all the time I looking to my breast and ask this question to my tumor : Do you grow now? where are you? damn on you.

    in my CT report I found "breast caner with auxiliary node 1.3 CM", is that mean the cancer reach to my node?

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Hope, I don't know the answer to that question. A CT scan only highlights areas of concern; it is a biopsy that can tell you if the lymph node is involved. Then the doctor can tell you which treatment plan she recommends.

    I'm so sorry about the waiting. I know that is hard. Do try to stay busy with things you enjoy as much as you can until you see a medical expert. We are sending good thoughts your way.

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    Hello Lcietla .. I hope you are ok ..

    My next appointment will be with oncologist, he ask me to repeat the CT,Bone scans, Ultrasound, Heart status and mamogramming to make sure about the previous results, the whole next week will spend on that, and week after I will met him.

    Everyday I generate a lot of questions about my situation such as :

    - Is Chemotherapy kills people? my body is not stronger and i do not know if I can do that . i am 49 years.

    - In my CT scan report, its written " Right breast cancer with right axillary lymph node 1.3 CM". is that mean I have cancer in my lymph node? if yes, is that mean the cancer spreads in my body?

    - What about Ca 15.3 - Ca 125 and CEA blood test? its useful in my case if I do it? did anyone make this tests ? I read articals that show the benefit of these test in the beginning of breast cancer. any ideas?

    please help ..

  • Icietla
    Icietla Member Posts: 1,265
    edited November 2017

    Hi Hope99. Those tests you are having next week will help about their planning for your treatment. If there are found any concerns as to your heart or other organ functions, they will take those into account in planning your treatment. Chemotherapy can be individually tailored by selection of the medicine/s and combinations thereof to be used, taking into account other health concerns.

    Your Doctors' treatment recommendations will be aimed at giving you your best prospects for survival.

    Chemotherapy saves people. It saves lives. It extends lives. It is much more tolerable than the typical experience of decades ago. Now they have remedies and more remedies for most any side effects that may come with Chemotherapy.

    I expect that before much longer, you will be on an anti-hormonal treatment, as I am. My anti-hormonal treatment has been easy, just a pill every day, and I have had no serious side effects. I hope yours will be just as easy for you.

    Age 49 is young. You can do it -- you can do whatever it takes. Get psyched-up, not psyched-out!

    https://www.youtube.com/watch?v=Yqe6dmMAAO0

    We cannot know about your lymph node unless and until it has had biopsy evaluation by a Pathology Lab. If it is diseased, that does not necessarily mean that the cancer has gone elsewhere in your body. It would mean only that that node is diseased. My understanding is that those blood tests can be used to help monitor progress from treatment -- but that changes about the disease state may take long times -- weeks -- to be indicated by changes in those test readings. If those tests have been ordered for you, your Oncologist can explain their helpfulness, significance, and their limitations.

    https://www.youtube.com/watch?v=CXd5Xk_EKpU



  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    I'm in hospital now to make mammogramming,ultrasound and ct scan. really I'm afraid, pain, and cry too much.

    I found large vesicular nuclei with nucleoli with frauent mitosis and desmoplasia in my biopsy report, I don't know what that mean. any help?

  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited November 2017

    Hi Hope, please talk to your doctor about your biopsy questions. I know mine contained a lot of scary words I did not understand and my doctor explained it just meant a malignant tumor was found which I knew. Also, when I was panickng about my stage and grade my BC stated very matter of fact, "Don't obsess with stage or grade, it is how you respond to treatment that counts." I was 49 when diagnosed in the Spring. That is still considered relatively young in the BC world. Even with my auto-immune issues, treatment was very doable. Hang in there...the beginning is the worst. As others have stated, once you get a plan set, you will feel more in control and less afraid. We are all here to support you.

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    I want to ask you about my node, specially auxiliary node, if the cancer reach their, is that bad news? I'm afraid, waiting kills me..

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    It isn't uncommon at all to detect cancer in the lymph nodes. The sentinel node is the mostly likely but others could have cancer too. It tends to be more favorable if no nodes have cancer but there is no guarantee that cancer has escaped the breast in either case.

    Try not to get ahead of yourself. I would ask for something to help your anxiety while you wait. Once you have surgery and start treatment things will get better. Unfortunately, doctors won't know about your particular chances of metastasis and outcome. The survival statistics are high and medications are improving.

    Let us know, we are here and have been through it. It will get better.

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    did multicentric tumor is bad sign to my tumor?

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    Multicentric means the cancerous tumor found to be in more than one quadrant of the breast. For example one found at 2:30 (like a clock) and another at 6:00.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Hi Hope. I had two tumors and the doctor told be that didn't make anything worse or more serious. The treatment plan and risk was really the same. But do ask your doctor how large each one is so you will have that information. I know all those tests are hard but they give the doctors good data to develop a good plan for you. We are wishing you the best.

  • Hope99
    Hope99 Member Posts: 148
    edited November 2017

    today I will finish last test (Eco test) before see the doctor.

    I read a lot of articles that talking about the statistics of nodes removal (auxilary and sentinel )and increasing the dead percentage, and the arm will be swollen and become so big, and no treatment to this problem, just accept it until the END) I'm scare because I've highly suspection to my nodes, positive node, according to my report below:

    in my case, highly suspection of multicentric disease (2.5 cm in greatest diameter) extension and auxiliary lymph node (1.8*1.1 cm and smaller rounded lymph node seen, measuring 0.7* 0.6 cm . no subpecrtoral lymphadenopathy) metastasis for which biopsy were obtained.

    any experience may clarify my concern please.

    thanks to all people that help and listen to me, I'm almost alone and no one care about my fears except you :)

  • solfeo
    solfeo Member Posts: 838
    edited December 2017

    Everyone who gets a breast cancer diagnosis fears that the END is near. I'm not going to say it can't happen, but in the vast majority of cases women live for many years after they get this horrible news. I thought for sure I was stage IV at diagnosis because I had alarming symptoms, like back pain. My tumor was large and had been misdiagnosed for at least five years. I'm still here with no evidence of disease. There is not a lot of reassurance we can offer that will change the fear you are experiencing right now, but the best thing you can do for yourself is try not to worry about anything that hasn't happened yet. Even if you think all hope is lost, there is absolutely no way to predict outcome based on the information you have right now.

    You can ask your doctor for a prescription for antianxiety meds to take the edge off until things level off for you. A lot of us have done that, including me, and there is no shame in it.

    Good luck and keep us posted!

  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited December 2017

    Hope99,

    I am very sorry you find yourself here. Being afraid is very normal. As far as crying too much...I’m not sure anyone can say how many tears are too many. We all handle stress differently. No one has the right to tell you how to feel. I can promise you that having moments of despair will not kill you.

    You are doing some very positive things, like joining these forums and making your list of questions. You have some good ones so far. Take your list to your oncology appointment and make sure you ask them. Ask your doctor if you can record your conversation or bring someone to take notes for you.

    My doctor does not do tumor marker tests. He feels they can give a lot of false positives or show elevation for no reason after treatment. Lots of doctors do. It seems to really depend on the patient whether they are helpful. Wish I could answer your specific biopsy report questions, but I can’t.

    I can say I was 47 at diagnosis. I’m still here 3 years later. It was not in my lymph nodes according to my pathology report from surgery. It was in my chest wall, so I did chemo before surgery to get a chance at clear margins. I am wondering if the measurements you are stating regarding your nodes are the measurement for the whole node and it is suspicious for cancer. I am not a doctor so I really have no idea. Maybe write that on your list of questions.

    Hormone status, in my opinion, has pros and cons for each scenario. For me it becomes “the devil you know.” You will find out what you are dealing with and you will have a plan.

    I would tell my doctor that I am very sad and anxious and ask for medicine to calm my nerves and to help me sleep. Can you do that at your next appointment?

    You are doing lots of tests and scans right now so instead of seeing that time as wasted, maybe see it as putting pieces of thepuzzle together.

    I, like someone else who posted, had a trip planned and had to wait for certain appointments and they told me to go and enjoy, if I could. Glad I did that.

    Be very kind to yourself. Try to do something you enjoy. Be with your kids.

    Keep us posted.




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