Breast cancer could they be wrong

[boninclyde]

I found two very very small lumps in my right breast. Went to OBGYN he said he did not think it was anything. Went to my GP and he said he did not think it was anything. Sent me for mamo they said it was very suspisous. They immediately did ultrasound and said I had calcification and need a masectomy. Schedule me for a biopsy. I was very upset at how this doctor told me these things so I left and went to another doctor. He was much more gentle but agreed with the other doctor only after doing another ultrasound and a biopsy. Biopsy was on Friday. I am on pins and needles waiting for the results. My questions is (lots) I have lumps in other parts of my body that have been there for years (10) and have never grown in size. The doctors (3) said they are nothing. Is there a possibility that the lumps in my breast are nothing? What else could they be? Could they be the same as those other lumps I have elsewhere? The doctor said the breast lumps is not a cyst.  Could they be wrong? Thanks for all answers in advance.

[CCF-RN,MSN-rf]

Dear boninclyde:  If a mammogram and ultrasound suggest the need for biopsy, it means that the area(s) of concern need further investigation.  It does not mean they are cancer but that there is enough suspicion that a biopsy is warranted.  The lumps that have been there for 10 years and are unchanged are probably not cancer.  That 3 doctors agree that these are not cancer suggests that the other lumps are benign, however we cannot speculate on what they are without evaluation.

[boninclyde]

Also if it is only calcification does it have to be removed? Why? Does it have to be a masectomy? Sorry for the other questions.

[Naniam]

I am not sure why mastectomy was all that was suggested.  I think most women do now have lumpectomies and if clear margins (edges) can't be gotten after a re-excision of margins, then  they will do a mastectomy.  Much depends on the pathology report but I would just tell them, you don't want a mastectomy that you would prefer lumpectomy (if that is what you want) and
ask them why lumpectomy wasn't mentioned. I was ask how I felt about a mastectomy before any surgery was scheduled. I chose lumpectomy.  I had a 2.5 cm spiculated mass with adjacent calcifications.  If you aren't satisfied, get another opinion.  Yes, it might mean a few week delay but remember, and this is hard, the cancer has been there for awhile as it takes time for it to even get large enough to be seen, so don't think waiting two weeks or so will make your condition worse or that you can't afford to wait.  We have many options open to us now and just educate yourself - ask questions, you will learn not to be timid or afraid to question a doctor.  You have the cancer and you have the right to ask all the questions you want, if the doctor doesn't like it, there are plenty of others that will take the time to answer and talk to you.

[mbd444]

I agree that you should find out all the answers to your questions before going under the knife.  Ask all these questions to your doctor or keep reading forums and sites and books that will give you the questions to ask and make a decision about what doctor to choose.  In my mind there would need to be cancer present at the minimum before I had a mastectomy.  Keep asking, don't feel bad, it's your body and your life!  I brought paper and pens to my doctors' appts. as well as a mini digital recorder.  There were so many things discussed in these appts. that I would forget what the doctor said.  You should ask if it's ok to tape the conversation, if they say no, go see someone else.  If you tape it, bring it home and the next day listen to it again and write your questions down.  Call the doctor back and ask more questions until you feel satisfied.  I went for a second opinion to another hospital and doctor, no one seemed to mind and they in fact should encourage you to do that.  It clarified for me the exact type of cancer I had since the biopsy was misleading.  Good luck.

[boninclyde]

Thank you all very much for the information. I do feel that since of urgency to get this out of my body but I also realize I have to slow down, do research and make good decisions. I am only 41 with 3 little girls.

I wish both of you could share your story but if not I certainly understand. Just looking someone to share this with. I have no other family (other than my 3  girls) and I stay to myself (a housewife) so I don't have any friends.

This may be the day I hear something. Waiting sure is rough.

[boninclyde]

OK biopsy came back inconclusive. They want me to come back in tomorrow but I am concerned that if they could not get what they needed the other day, how will they now that my breast are bruised and swollen? Should I wait until the swelling has gone down? Anyone else had test inconclusive and what were your end results? Thanks so much in advance.

[Naniam]

Sorry that you don't know something for sure.  You said they wanted you to return tomorrow but not sure if you mean they are going to biopsy again or what.  I am not much help on this as my only biopsy was "excisional" when they were 99% sure it was cancer.  I do know that the pattern of the calcifications is what raises suspicions.  In my area, they did what they call cone views, which is just more compression and I guess higher magnification to evaluate calcifications.  Ultrasound wasn't used for that.  This is the one thing that frustrates me, there doesn't seem to be a "standard" as to how these things are evaluated and it sure causes women to have to undergo unnecessary amounts of stress!!!   Now that I have vented on that, do they want to biopsy again tomorrow?

[boninclyde]

Yes. I go today. This time they said I would have to lay on my stomach with more compression. Needle would be guided by mamo. Strange to be guided by mamo. But a different needle would be used. Yeah the last thing I wanted to do was to wait more and have more test. This is killing husband and kids.

[belochka39]

That kind of biopsy is called stereotactic core biopsy and it's used when the mammogram shows clustered micro-calcifications. Hopefully they will get the accurate results this time. Try to think positive and keep yourself occupied with social activities, being among people helped me to wait ....

[boninclyde]

I am back from my second biopsy. Oh my goodness how bad it hurt. I have heart issues so they could not give me the pain shot with epineprin. The epineprin causes complications for me. But I made it through. This was a different doctor now a fourth who also said things looked very susipious and not good. Tired of hearing all the unsurity so I did not ask many questions. I just want the results. Now maybe Friday or monday. Sorry about my spelling errors. I'll keep everyone posted.

[Naniam]

I am truly sorry that you are having to wait.  I hope the web sites that you found on another posting I did for you help.  Just be prepared to ask questions.  Some women don't want lots of information - that wasn't me but we are each different but there are just basic questions you need to ask.   I am off this morning to have the echocardiogram to check for heart damage(I think many of my problems is just related to having to stop estrogen) and the repeat of my liver function test.  I truly think all will be well.  I don't think I will know anything today.  Hope you are feeling better today from your biopsy.  I think you have already discovered this is an emotional roller coaster..   Blessings

[boninclyde]

I do feel better today. A little sore. Hope things go well for you this am. Check on you later.

[mbd444]

Yes, keep us posted on the results.  

The best way to deal with this I think is to talk about it.  Talk about it with everybody, it's one way of dealing and accepting the news yourself.  There will be moments when you'll cry, be frightened, be angry, be sad, but talking about it helps.  Reading more about it helps too, I bought several books when I was diagnosed, since I knew nothing about breast cancer, it helped me understand what my body was going through.  Of course it doesn't answer the question "why me?" but you'll never know that.  

Best thing to do is take care of yourself emotionally, psychologically, and physically, as best you can with the 3 girls around.  You will need time to yourself, I hope you can get it.  I did a lot of meditation and went to 2 yoga classes a week, and it saved me.   I was (still am) going through a divorce at the same time (and got laid off from my well-paying job as the primary support for my family because my husband is disabled)...!  So, a lot of stress was not what the doctor ordered, so I made some huge decisions in my life to take care of me first - something I'm not used to.  My life depended on it and so could yours.

I had stage I IDC, lumpectomy with radiation and now I'm on tamoxifen with headaches as a side effect.  I can deal with that if it's going to help prevent the cancer from coming back.  I have a mammo tomorrow and I haven't really worried about it yet but I think if I really sat down to think hard about it I would be frightened.

We're all in this together ladies!  Take care and keep us posted.

[healthcareguerilla]

"This is the one thing that frustrates me, there doesn't seem to be a "standard" as to how these things are evaluated and it sure causes women to have to undergo unnecessary amounts of stress."

Absolutely and that is exactly where our efforts need to be directed when we have the energy to do so.  Thank you for expressing a critically important problem.

And boninclyde -- it is not just a matter of getting other surgeon's opinions.  I do not understand results that are 'inconclusive'.  I'd have the slides sent to another pathologist at an institution with an expert team.  Cleveland may do this.  Mine went to Vanderbilt.

[Naniam]

I think you went to the surgeon today for a visit.  Please let us know what he had to say.  Just remember, we are all here, we are "sisters"

[boninclyde]

I did see the surgeon today. It seems that every doctor I see things just get worse. I wish they would just tell me. These are four different doctors actually, 1 doctor then, two radiologist and today my surgeon. They all agree my calcification and DCIS is 6" inches long on my right breast from my nipple to just below my under arm  and headed toward my lymphs(and that I need a masectomy). Now they say it may be invasive and they could not promise me that it was not in my lymph nodes. They would not know until my masectomy. During my masectomy the first thing they would do is inject dye and take the fisrt 3/4 nodes and send them to be tested while he proceeds with the masectomy. If those lymphes are infected then he will remove more. Half of my breast has DCIS that is why he recommends masectomy. There would not be much breast left. He has encouraged me to see a plastic surgeon for reconstructive that will also take place during the masectomy but will require a longer surgery and some follow up surgery. He also says the healing would be more complicated if I do this during the masectomy (why did he recommend it then when I was not concerned with reconstruction). Anyways I got a copy of my pathology report and here it is. Remember this all started out with DCIS only no invasion.

Right breats, lateral, ATEC biopsy for calcifications:

High grade duct carcinoma in-situ, nuclear grade 3 with intraductal necrosis and calcification, with extension into lobules.

Negative for invasive carcinoma.

Thats it. But he also said just because they biopsied two places he could not promise me there was not invasion. He felt he would possibly find some due to the amount of calcificatiion. And the invasion could be in spots they did not biopsy. And he felt this could be in my lymph nodes.

But lets pray it is not in my lymphs. Thats all I know for now. I have to put my girls to bed now and myself as well. My girls by the way sat in the wainting room for 4 hours patiently. With no problems. They are 5, 12 & 16. What great kids. It's sad I had no other choice. Someone else asked me if I had family outside the state where I lived that could help. Unfortunetly I have only us.

[boninclyde]

The first inconclusive test was because he could not hit/target the spots that needed to be tested. He missed four times. He ended up with normal tissue. They retested because several doctors knew from looking at mammo there was something there.

[Naniam]

I am truly sorry you didn't get more encouraging news.  Since reconstructive surgery at this point isn't high on your list, did they schedule your surgery?  What is the next step?  My knowledge of DCIS is limited and pretty much only as to what it means.  Normally, if there is such a thing in BC, it would be the easiest to treat and inflammatory breast cancer is the worst news one could receive.  All cancer is different grades, stages.  I do pray it is not invasive or in your lymph nodes, however, try to remember there are plenty of women who did/do have invasive breast cancer; it was in their lymph nodes and after treatment they are doing well. I know several.  Mine was invasive but not in my lymph nodes.   All of us that have heard the words "you have breast cancer" and know how overwhelmed you are, how scared, how confused and we know the tears that are shed.  Sounds like you are a great mom and have done a wonderful job with your girls - also, they know Mom is scared and hurting and they love you and they are scared too.   I was surprised at how well my 8 and 5 year old grandsons handled being told and looking at me when I lost my hair.  The 5 year old wanted to see that I didn't have hair and said that's not so bad; the 8 year old walked into another room
but when he saw his brother was OK he turned and looked and then came up to me and gave me a hug and said "Nana, I love you".  The 8 year old did ask his dad if I was going to die.  I know you will find your girls a great source of comfort in the days and weeks ahead. BC is a family affair.  Keep us posted.  You have friends here.

[boninclyde]

They have my surgery scheduled for August 25th. They want me to see a plastic surgeon just for a consult anyway. Which is OK. I will do. I wonder if having reconstructive surgery (Implants) during sugery and I have more cancer than originally thought, like in my lymph nodes, if this will interfere with chemo or radiation later to get rid of remaing cancer? He said I would be a good canidate for reconstruction but I might have a longer healing time because I smoke. Yes I'm trying to quit. Please no one scold me for this. I already know. Anyone want to share information about saline verses silicone? Thank you in advance.
Healthcareguerilla Thanks for your info.
mbd444 & belochlca Thank you very much also.

[Naniam]

My daughter is and always has been a very thin person.  She had very small breast and when she was finished college and had worked awhile, she had the saline implants. This has been about 7 years ago now and she hasn't had any problems.  In fact, my granddaughter is 16 months old and my daughter breast fed without any problems.  I only remember her telling me after she had seen the doctor about the implants, the problem with the saline implants is that they can develop a leak and empty pretty quickly, so you could be lopsided; however, she has been fine.   They always have to tell you the bad stuff that COULD happen.

[boninclyde]

Thank you so much for the info.

[ronnieo]

I wish you luck with your mastectomy.  I had mine 11-11-05 with reconstruction.  I am glad I had arranged to have reconstruction with the mastectomy as there is only one more surgery if done at the same time.  I do regret not having bilateral mastectomies with reconstruction as the breast left will never match my new one.  The people that had mastectomies I know never bothered to get reconstruction.  I know two women that had the other breast removed and reconstructed for more symmetry.
There is no right path and you have not had as much time to process all of this.  I was diagnosed the first weeek in Aug. and had three lumpectomies before the mastectomy.  I will keep you in my prayers.

[boninclyde]

Thank You. I just want to get through this masectomy ASAP and get back home. I may decide later to do reconstruction. My husband does not want me to but left it up to me. He and I both want my body to focus entirely on healing me of this cancer and not other surgery for now. Keep us posted and I'll  do the same. How long did your operation take?

[boninclyde]

Needed to see how you are all doing? Hope your well.

[Naniam]

Hi,  how are you holding up?  I saw on another post you had made that your surgeon was also going to be your oncologist.  Are you still going to the Cancer treatment center or elsewhere?
Mine were separate at Baptist.  I have been posting on breastcancer.org because of the problems I have been having with joint pain. In the beginning I wanted to learn everything I could about BC, then I got to the point that I couldn't handle anymore and didn't want to talk about it either and just wanted it behind me.  I think the waiting is the hardest; waiting for biopsy results, waiting for surgery and those results and then waiting to start chemo/radiation.  BC is an evolving process and it is hard for those of us who have patience.  I think each of us goes through the grief process too: denial, anger and finally acceptance.  Stay in touch.  

[boninclyde]

I guess I'm OK. I'm fine one mintue then I fall apart the next. Anyone here ever had a nervous breakdown. Wonder what happens when this happens. I sometimes shake all over. I wake up in the middle of the night shaking. Sometimes I throw _ _.I never had emotional problems before. All I can do is wait for my surgery (masectomy)August 25th. Sure seems like a long time to just let this cancer sit in my body. But he is the best around Charlotte, NC or anywhere. He is with Blumingthal Cancer Center. He studied some at The National Cancer Institute. He teaches here. So all of the other cancer doctors here have been taught by him. He flies all over the world teaching and speaking. People fly here from all over the world to see this doctor. He is very good. He specializes in all types of cancer for men and women. He will be my surgeon and my oncologist. I am very lucky to have been able to get into see him. I'm just scared of the surgery. Being put to sleep. I have a low tolerance to medications. Allergic to alot of medications and have MVP with regurgitation. Have had hives four 4 years which no one knows what causes them. I suffer from anxiety/panic attacks due to my childhood. Even the doctor said he has his concerns about my surgery. I am 41, very active and don't get sick much though. I do take Xanax but they don't seem to help. I don't like the thought of being away from home. You all will probaly be glad when my surgery is over so I will stop whining. I'm sorry.

[lisa2305]

Hi i am new to this site, i just want to say how incredably brave you all are!  I am 24 and have had an obession with breast cancer since i cant remember i live my life worrying that i will get it one day. to read what you are going through puts me to shame, i really hope all goes well for you, your children must be so proud of you good look for the surgery, will be checking to see how you get on.

Take care xxxx

[Naniam]

I think we all have our "war stories".  My port insertion for my chemo treatments was supposed to take an hour, mine took two hours!!!!  My heart rate started to go up and my heart rhythm
kind of messed up to.  The surgeon/radiologist was frustrated too and he said that my vein was very narrow and apparently I was born that way (I pray I never have to have chemo again because I am not sure they could reinsert the port and my veins are horrible) anyway, by the time they were through and I walked out of Baptist, I was shaking so hard my teeth were clattering and they sent me home in one of their blankets.  In fact, I have two of their blankets here because I had difficulty another time.  We have all had our moments of just the nausea; I found myself off in another world those first weeks -  there were times that only God could possibly know the depth of my pain and fright.  My last surgery was on Aug.24th, so you will be having yours close to my last date.  It sounds like you have found an outstanding surgeon/oncologist..   He is going to take VERY good care of you and he will be really on top of things because you have been honest with him upfront about your anxiety.  By the time the 25th rolls around you will be more than ready to get this done, get it behind you and get home - you will be so tired of the waiting.  Remember when you were pregnant and it was time to deliver and you were just "ready" and what the heck with the pain?  I really, really dreaded the labor. I read one of your other post about the first surgeon and I am glad you have found someone like this.  My oncologist also did some training at National Institute of Health and is very much involved in research - he is also a very gentle, caring man.  Mine was invasive and I got the call from my gyn doctor one morning I needed to see a surgeon, saw the surgeon about 3 days later and was in the operating room 3 days after that.  I never told my husband it was 99.9 chance it was BC; I apologized later and he told me he knew; he knew because of how fast things were being done.  Cancer is something that happens to other people - not you; we have all been where you are.  You are not being "wimpy" or "whinning".  
(((((((Hugs and lots of them)))))))) to you!!!!!

[boninclyde]

You sound like such a gentle person. Hard to believe that there has been a couple of times today that I was excited (gosh is that the word I was looking for) that the day is getting closer. Yes my husband keeps telling me that if I can have three kids I can do this. I just pray when I wake from surgery this will be over. The cancer will be gone.

[cyn17]

Please talk to your doctor again about your anxiety and consider taking Lexapro instead. Lexapro has literally been a life saver for me by stopping panic attacks and anxiety. I'm 43 and for the past few years have had many breast 'issues'. This summer has been looong and stressful dealing with mammo, ultrasound, MRIs, and now next week 2 biopsies. Through it all, I have not had a panic attack, no upset stomach, and I sleep soundly...this is because of Lexapro, NOT lack of my brain running every senario over and over. :)

On a separate note, I did have a meltdown with my doctor's office yesterday and today I took back control of my health and found a new doctor that I will meet next week. I must have a doctor that answers my questions and returns my calls. Since mid-June I did not receive a single call directly from my doctor to explain what was going on with my tests. I called and left messages until one day I asked the receptionist to pull up my file and read it to me (I sent her flowers afterward). I found out I needed an MRI by receiving a notice from my insurance company (on a Saturday no less)stating that I was pre-approved for the proceedure.

The good news for now...the radiologist said one nodule is definitely benign based on the MRI. I have another nodule that they just can't get a look at (very dense breasts) and is 'likely' benign. The bad news: both radiologist and doctor told me to prepare to go through similar tests for many years to come as my breast are 'very complex'. Swell!  --Thanks for the vent. Take care!

[Naniam]

I forgot to tell you that after my last surgery and I had the drains from the excision of lymph nodes and got home, the drain got stopped up and it hurt.  I can kind of laugh about it now but at the time I had found out I had invasive breast cancer and had two surgeries in less than a week and then the mess with the drain - don't think my nerves weren't shot!!!!!!!!!  
I called the surgeon's office and would you believe that they told me they didn't give medication of this type and I would have to call someone else.  I could not believe it - in fact, I told the nurse just how I felt about that.  That is another reason I went for a 2nd opinion at Winston.  In visiting other discussion sites, I have realized how lucky I am compared to many women.  They have had much more aggressive forms of BC and had many more chemo treatments than I required.  Personally, I have always felt women are stronger than they realize, my goodness, we do survive labor and many other difficult situations/surgeries  and we survive BC and come out even stronger women.  God made us pretty tough!!!!!!!!

[boninclyde]

Went to meet anathesiologist this morning and it's a good thing I did. As most of you know I am having a masectomy Friday 25th and they also had me scheduled for tram flap reconstruction. Which I am not having any reconstruction at this time. Imagine that. Now with all my other anxieties I have to worry about waking up with the wrong type of surgery performed. **** I will be lucky if they get the right breast. Sorry just really upset. The lady that does the blood work would not even do it because of my poor veins so she sent me to phlebotomy to get it done. Then I went down the hall for my chest xray and the nurse kept calling for a Ms. Hicks thens approached me to ask if I was Ms. Hicks. I told her no and gave her my name and she said yes you are the one I was looking for she just had someone else on her mind. Oh my ***. This is a major hospital. Sounds like I'll be in very good hands. Please pray for me. Now I'm really terrified.

[Naniam]

You know, when I read this I though "of all the people to happen to".  I am sorry.  When I had my surgery, they ask me my name, date of birth and the type surgery; which side, I was there for - just as a double check that we were all on the same page.  I am sure it will be fine but you were anxious enough.  
Sat. was the first anniversary of my first surgery.  I will admit that it has brought back many memories and many "what if's".  I guess that is only normal.   Stay in touch; have had you on my mind and look for post from you here and on other sites.  I would suggest though that you give the surgeon's office a call and speak with the person that schedules his surgery. Make sure they realize you aren't having any reconstructive surgery at this time.  Having worked in medical for many years, the surgeon's office provides the info to the hospital when scheduling and they allow date and time based on what all is being done at the time of surgery.  Just a thought.

[boninclyde]

You are right I did call the surgeons office as soon as I got home. She told me that they always schedule surgery for as long as possible to reserve the operating room so they put in that I would be having a tram flap to allow for extra operating room time just in case recons was my decision. After this was scheduled I was then made the appointment for the plastic surgeon which I did not want at this time. However, the paper work made it to the hopital and the nurse there this morning told me to make sure I told them when I showed up for surgery Friday I was not having reconstruction. But that is their job. Anyway I spoke to my surgeons office as they tried to reassure me that my surgery is now properly scheduled. Thank You Naniam

[boninclyde]

The surgeon just called to tell me that my chest xrays showed a spot and they are not sure what it could be so they are now sending me for a cat scan and may have to postpone my surgery. What A great dat i am having.

[Naniam]

(((((((Hugs))))))))  I will say a prayer for you tonight that the CT will be OK and that you will be given an extra measure of calmness and strength.  Lets just hope that it is perhaps a shadow from some of the cancer that is in the breast.  Have you ever had pneumonia as sometimes that can cause some scaring.  I remember you said that you smoked.  I am not expressing myself very well, have really been tired today for some reason, but there could be other reasons for "the spot".  I pray that is the case.  Please let us know when you CT is scheduled and the results.  I have posted on breastcancer.org and you can find my e-mail address there if you want to write.  I know they don't allow that on this website.  

I think I mentioned that Sat. was a year from my first surgery and hearing the words "it was cancer"; I have gone back to the week prior to surgery and all the stuff that has happened since.  My heart just breaks and aches for all of you who are just starting this journey or having to deal with it again.  Boninclyde, I am a friend if you need one and myself and everyone else understand your frustration, anger, and being scared.  We will walk with you!!!!!!!!!   PLEASE stay in touch

Blessings.  Hang on, sometimes we deal with some bumps along the way.

[Naniam]

An afterthought - since they weren't calling you by YOUR name when they did the chest x-ray but kept calling a Mrs. Hicks; just make darn sure the chest x-ray was yours.  Not sure who will call you with the CT appointment your surgeon's office or the CT appointment secretary.  I know I sure would mention it.

[ziggy123]

I am in total agreement with Naniam. Make sure that the results that were read were yours and not the other person they were mistaking you for! As always, you are in my prayers.

[boninclyde]

Got that call from my surgeons PA to tell me after comparing xrays they did not THINK the spot was anything. I just don't understand the diagnosis. They don't THINK it is anything. I did not get to talk to the doctor and will probaly want get to unitl surgery. Wonder what the       it is then. Anyways. It won't be long now.

[ziggy123]

Dear Boninclyde,
I will be thinking of you as you approach your surgery date and I will continue to pray for you and your family. We are all behind you and you will get through this. Again, my prayers to you...

[Naniam]

I guess your surgery is still on for the 25th, tomorrow.  Not sure if you visit again before your surgery but when you can, please let us know how you are, OK?  Maybe post also on breastcancer.org so the "force of the Sisterhood" can surround you (borrowed that from another sister)  

I look at the report on the chest x-ray this way; if they didn't say "we are concerned, you need additional test", things are A-OK.  

Remember:  The "Force" will be with you tomorrow!!!!!!!!