Help.... just diagnosed.

joanf
joanf Member Posts: 10
edited March 2014 in Breast Cancer #1
I was diaginosed with intraductal carcinoma (which I believe is DCIS) at the beginning of the month. After another biopsy the surgeon will make the decision if it's a lumpectomy or masectomy. Then she says I'll have radiation. I've done some research and I'm confused (a little knowledge is a dangerous thing). Can anyone tell me if they had radiation without chemo? In one book I looked at it seemed that you always have both. And is lifelong hormone therapy always prescribed as a followup to any breast cancer? I haven't seen my surgeon since the DX (there was a delay scheduling the 2nd biopsy) and my brain is just exploding. I cannot imagine letting them take off my breast.... I really didn't know I was so attached to these little girls.
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Comments

  • muppie
    muppie Member Posts: 8
    #2
    Dear Joanf - Take a deep breath and try to relax. There are lots of people to help you through this. I was diagnosed with breast cancer 17 years ago. I was 38 and it was 3 months before my wedding. I had a mastectomy. I got married on schedule. My husband made me feel like the most beautiful woman in the world. I had reconstructive surgery 4 months after the original surgery. At that time, the doctors did not recommend any further treatment. Four years later, I had a reoccurance of cancer in the chest wall and had radiation followed by chemo. Not everyone who has radiation has to have chemo. It all depends on what your doctors have to say. As far as hormone replacement - I guess it depends on the type of cancer you have. That has not been possible for me. But whatever happens - you are being treated at a wonderful time when so much has been learned about breast cancer and so many new drugs and treatment are available. Look at me - here and fine - 17 years later. If a mastectomy is necessary - it really isn't the end of the world. In a bra - you can't tell the difference! I do recommend getting reconstructive surgery. But put your faith and trust in your doctors. I will put you in my thoughts and prayers. Please emeail me if you need to talk or some support. I am always online - mostly in the evenings.
  • JLGall103
    JLGall103 Member Posts: 7
    #3
    HI JOANF
    I HAD MY FIRST LUMPECTOMY ON 12/12. THE SURGEON SAID IT WAS DCIS (NON-INVASIVE) SHE SAID ALL THE MARGINS WERE CLEAN, IN ONE SPOT THE CANCEROUS CELLS WERE VERY CLOSE TO THE MARGIN. SHE WANT TO DO ANOTHER LUMPECTOMY 01/08 TO TAKE SOME OF THOSE CELLS NEAR THE MARGIN OUT FOR TESTING. THOSE CELLS WERE NON-CANCEROUS. I WENT FOR A MAMMO 02/06, AS A PREREQUISTE TO MY 7 WEEKS OF RADIATION. THE RADIATON DR. SAID A CALCIFICATION WAS 'LEFT BEHIND' DURING MY LUMPECTOMIES. I HAVE AN APPT. WITH THE SURGEON TOMORROW TO "SEE WHAT THE SURGEON WANTS TO DO". I DON'T KNOW IF SHE'LL WANT TO DO ANOTHER LUMPECTOMY OR NOT, OR WHAT! IN ANSWER ABOUT THE RADIATION AND CHEMO, MY SURGEON SAID FOR DCIS, RADIATION IS ALL I WOULD GET. SOME WOULD SAY EVEN THE RADIATION IS "OVER-KILL" FOR DCIS, SHE SAID, BUT BETTER TO BE SAFE. IF A PERSON GET CHEMO, THEY DO NOT USUALLY GET RADIATION, FROM WHAT I UNDERSTAND. THIS IS MY FIRST TIME ON THIS WEBSITE, PLEASE WRITE BACK (JLGALL103@aol.com) SINCERELY, LOUISE KATHERINE
  • mssue
    mssue Member Posts: 242
    #4
    It's mind boggling to say the least when you're diagnosed,there are alot of decisions to make and everything seems to happen very fast.You must remember that it's your body and you should be a part of the decision of what takes place.There is alot of information out there,I got alot of mine on the internet by just typing in breast cancer. Treatment is usually determined by the type of cancer you have,the stage and the location.I only had chemo no rad,and no hormone treatment.Second or third opinions are definitely not out of the question if you are not comfortable with the answers your getting from your Dr. or Surgeon.My cancer was small,cancer runs in my family,so I decided on the mastecomy and chemo.If I would have had the lumpectomy I would have had rad and chemo.Please do more research and asking questions,there are never too many.My prayers are with you-hope you get the information your seeking.Take special care of yourself and get plenty of rest you'll find that it's essential.
    Sue
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #5
    A little knowledge is dangerous, but a lot is power. Recommend cancer.gov also type in mastectomy vs lumpectomy. Unless stats have changed both have an equal cure rate.
    God bless.
    hummingbyrd
  • swmets
    swmets Member Posts: 5
    #6
    From my past experience - unless there is lymphnode envolvement - you may warrant just radiation. Lumpectomies are more common now when you are early stage cancer. If a mastectomy is recommended by your doctor - it is not the end of the world. I had a radical left breast mastectomy, 6 rounds of chemo & trans flap reconstruction all in 1991. Implant law suits were big then so I decided on using what God gave me to get another boob. If the reconstructive surgeon is one of the best - go with the trans flap - you get a tummy tuck too! If your hormone receptors are positive - more than likely a pill will be perscribed as follow up. You are lucky if you receptors are positive otherwise there are no meds to make sure the cancer doesn't come back. My original doctors told me my receptors were negative - found out 7 yrs later they were positive & now I have metastatic breast cancer in my bones. A second opinion is always worth getting if you are not sure of your treatment options. Hope this helps - Good luck
  • lisagm39
    lisagm39 Member Posts: 6
    #7
    I know what your going through I was also just diagnosed with same thing on 02/06. Everyone is throwing info at you right and left. They are reccommending mastectomy for me and chemo. Very scary just got married 11/17/03. Thats all we needed. Feel free to email me will be happy to exchange information with you.
  • Leenie
    Leenie Member Posts: 33
    #8
    Hi, Joanf
    I was diaginosed on Jan2 03 had 2 surguries and radation. Mine did not effect the lymph nodes and was small. With my age (39) they gave me the choice for chemo or not. I choose not. I did have radation and am on Tamoxifin for 5 years. All is well with me at the moment.. Take care & I will pray for you.. Just remember Only Happy Thoughts...Leenie
  • kit_katt58
    kit_katt58 Member Posts: 3
    #9
    Iwas dx with matastic breast cancer in Jan. of last year and under went a radical mascetomy and DID NOT have reconstruction of the left breast. Only YOU can make that decision....I feel good about my self image and my body. When I look into a mirror my scar reminds me of how lucky I am to be alive and how beautiful my body is with or without 2 breast( I also have very small breast.)When I decide to wear something low cut for the summer or my bathing suit I have a prostetic breast I use that fits inside my bra and no one can tell the difference. The choice is ultimatly yours. Good luck and keep us posted....Kit
  • tlmac
    tlmac Member Posts: 272 Member
    #10
    Your cancer was caught at an early stage and is non-invasive. Breast tissue surrounding it hasn't yet been affected. Chemo is systemic treatment meant to kill microscopic cancer cells that may have escaped to other areas or organs of your body. Your cancer is confined to the duct. This is terrific news. Removal of the mass and radiation to the area may be all you need. Don't hesitate to discuss all concerns with your doctor. There are no stupid questions!!
  • PJ14
    PJ14 Member Posts: 1
    #11
    muppie said:

    Dear Joanf - Take a deep breath and try to relax. There are lots of people to help you through this. I was diagnosed with breast cancer 17 years ago. I was 38 and it was 3 months before my wedding. I had a mastectomy. I got married on schedule. My husband made me feel like the most beautiful woman in the world. I had reconstructive surgery 4 months after the original surgery. At that time, the doctors did not recommend any further treatment. Four years later, I had a reoccurance of cancer in the chest wall and had radiation followed by chemo. Not everyone who has radiation has to have chemo. It all depends on what your doctors have to say. As far as hormone replacement - I guess it depends on the type of cancer you have. That has not been possible for me. But whatever happens - you are being treated at a wonderful time when so much has been learned about breast cancer and so many new drugs and treatment are available. Look at me - here and fine - 17 years later. If a mastectomy is necessary - it really isn't the end of the world. In a bra - you can't tell the difference! I do recommend getting reconstructive surgery. But put your faith and trust in your doctors. I will put you in my thoughts and prayers. Please emeail me if you need to talk or some support. I am always online - mostly in the evenings.

    Dear Muppie, I read your entry and it gives me hope. It is nice to hear a survivor story. I was diagnosed in October 03. Had a lumpectomy and 2 weeks later had a partial mastectomy. I just finished my 4 rounds of chemo and in a few weeks will start the 6 weeks of radiation. After all of that they are wanting to do 5 years of medication. This whole time has been very scary to me, I have a wonderful support system with my family, but they don't know what your going through day to day. Every time you talk to outsiders they always have negataive stories to share. I find this very upsetting. I know I should just learn to walk away. This is why I'm delighted to hear a positive outcome.
  • dustystorm31
    dustystorm31 Member Posts: 5
    #12
    I understand completely!! Mine was just a medullary carcinoma. I had my biopsy and they sent it off to the lab, and the fluid came back abnormal so they took the lump out. Well we wanted a second opinion, and found out it was cancer, but it was not aggressive or anything. So the Dr wanted to just be safe and take the tissue tnat surrounded the lump out as well. When I went for surgery they ran a dye to my lymphnods just to be on the safe side, and one of my lymphnods came back positive. So they took the first, second and half of the third out. They came back all negative, but I had my blood tested that BCRT1 test and it came back positve. I have the mutation gene. So I have to got the 25 of this month and get both of my breasts removed and I am having expanders put in. Then I have to take 12 treatments of chemo. I am soo scared. But god has a plan for everyone.
  • joanf
    joanf Member Posts: 10
    #13
    JLGall103 said:

    HI JOANF
    I HAD MY FIRST LUMPECTOMY ON 12/12. THE SURGEON SAID IT WAS DCIS (NON-INVASIVE) SHE SAID ALL THE MARGINS WERE CLEAN, IN ONE SPOT THE CANCEROUS CELLS WERE VERY CLOSE TO THE MARGIN. SHE WANT TO DO ANOTHER LUMPECTOMY 01/08 TO TAKE SOME OF THOSE CELLS NEAR THE MARGIN OUT FOR TESTING. THOSE CELLS WERE NON-CANCEROUS. I WENT FOR A MAMMO 02/06, AS A PREREQUISTE TO MY 7 WEEKS OF RADIATION. THE RADIATON DR. SAID A CALCIFICATION WAS 'LEFT BEHIND' DURING MY LUMPECTOMIES. I HAVE AN APPT. WITH THE SURGEON TOMORROW TO "SEE WHAT THE SURGEON WANTS TO DO". I DON'T KNOW IF SHE'LL WANT TO DO ANOTHER LUMPECTOMY OR NOT, OR WHAT! IN ANSWER ABOUT THE RADIATION AND CHEMO, MY SURGEON SAID FOR DCIS, RADIATION IS ALL I WOULD GET. SOME WOULD SAY EVEN THE RADIATION IS "OVER-KILL" FOR DCIS, SHE SAID, BUT BETTER TO BE SAFE. IF A PERSON GET CHEMO, THEY DO NOT USUALLY GET RADIATION, FROM WHAT I UNDERSTAND. THIS IS MY FIRST TIME ON THIS WEBSITE, PLEASE WRITE BACK (JLGALL103@aol.com) SINCERELY, LOUISE KATHERINE

    I am absolutely stunned how generous you folks are with your info and kind thoughts. But I have a question .... everything I've read (and per the surgeon)for my Dx has standard treatment as lumpecotmy/radiation. Marie Lousie... I love that you said the "some would say radiation is overkill". But WHO? Can you direct me anywhere specific? I appreciate the idea of doing the right thing, but my heart really wants to do as little as possible. If I can get away without the radiation that might be a beautiful thing :).
  • inkblot
    inkblot Member Posts: 698 Member
    #14
    Hi joanf:

    I know it must seem as if an entire hive of bees are loose in your brain right now. Just give yourself time to settle a bit and my best advice is to get educated. Solid, reliable information. A good place to start(as well as hummer's suggested site) is www.nci.nih.gov A wealth of info there on types of bc, treatment options, including surgeries, etc.. Get a copy of your pathology report and read it carefully and ask the doctor to answer any questions you may have, which you cannot find through websites, etc..

    I am alarmed to hear you say that the Dr. will make the decision as to which type of surgery you will be having. THAT is YOUR decision, not the doctors. The doctor's role is to make recommendations and then qualify/justify those recommendations to you. You must take an active role in your treatment/surgeries and all other processes. So, get the info you need and do not be rushed into anything.

    A 2nd opinion is absolutely essential here and I hope you'll take the time to get one. A highly skilled surgeon is a wonderful find, but remember that their expertise is "cutting" not treating.

    RE your "lifelong hormone" question: I assume you're referring to Tamoxifen? It isn't really a hormone. More of an anti hormone. Most women are advised, after having bc, to avoid all hormones. Even the weaker, plant derived phytoestrogens. If your cancer is hormone negative (ER and PR negative) then you likely are not a candidate for Tamoxifen. If your doctor thinks you are (and your path report shows your cancer is hormone negative) it would be highly unusual and a questionable thing. (If your cancer was not tested for hormone receptors, then you may request that test be done) Side effects come with that drug for many women, but not all.

    Right now focus on getting all the info you can and making a list of questions for your doctor and getting an appoint. for a 2nd opinion.

    Some women have just chemo, others just radiation and a lot of us have both. I've heard of some women whose doc's recommended nothing at all beyond surgery. No two cancers are the same just as no two women are the same in how they wish to approach treating it. Remember, it's your body and your emotions and as helpless and confused as you may feel right now, it's nothing that some education (and some calming) can't improve. You have choices and you'll want to make them in an informed fashion as much as possible.

    Remember to make time for some relaxation and recreation while you're going through this fact finding and decision making process. It's demanding and taking time away from it can help reduce the stress.

    Please keep us posted.

    Love, light and laughter,
    Ink
  • epgnyc
    epgnyc Member Posts: 137
    #15
    Hi, JoanF. I was diagnosed with Stage I invasive breast cancer in May 2002 and finished my chemo and radiation in 2003. Looking back I think the point you're at now is the most stressful emotionally. It's the shock of the diagnosis and all the information and choices to be made. But it does get much better once you've asked all your questions and made your decisions. I agree with the person who said "there are no stupid questions!" You're lucky with a diagnosis of DCIS - the cancer hasn't invaded your breast but is confined to the duct itself. You (and I stress the YOU here) and your doctor will make the decision whether you'll have a lumpectomy or mastectomy. I've only heard of one person with DCIS having had chemo - but she was only 31 and her tumor was huge at over 8 cms. I know people who have had surgery with nothing else (except the 5-year taking of Tamoxifen) and others who had surgery plus radiation. I had a close friend with DCIS who went to Memorial Sloan-Kettering in NY, one of the country's leading cancer centers, and they told her no radiation was necessary. But that was five years ago and I believe the thinking on this may have changed....as so much does with breast cancer treatment. I agree with the others who have posted that much depends on your individual cancer. It's very important to find out if your cancer is estrogen/progesteron positive or negative since that will help determine whether you're a candidate for Tamoxifen. I'm ER/PR negative myself, which means I'm not a candidate. Too bad - I wish could take it since it gives one added protection against recurrence. Again, good luck and take a deep breath. You'll get through this!
    Ellen
  • tlmac
    tlmac Member Posts: 272 Member
    #16
    Since you haven't yet discussed the pros and cons of mastectomy vs lumpectomy, it may not have been explained to you that mastectomy does not require radiation. Radiation accompanies lumpectomy, when healthy breast tissue is left and only the mass is removed, in order to kill anything microscopic that may have escaped into healthy tissue (where it would grow). There is always a chance no cells have yet migrated from the duct. Choosing a lumpectomy without folowup radiation is a risk. Only you know if it's one you're comfortable taking. Talk with your medical team before making any definite decision.
  • fisherdh1
    fisherdh1 Member Posts: 4
    #17
    Hi Joanf,

    I am a three year lumpectomy survivor. I had a small 1.1 cm tumor, which was removed; lymph nodes were negative; followed by radiation. Whether you get radiation depends on the size and aggressiveness (how fast it grows) of the cells. You've got lots of good advice here! One more thing that has helped me loads is getting educated. Dr. Susan Love's Breast Book is a super reference on just about everything.
    I am on 5 years of tamoxifen as well. Minor symptoms worth living with for the protection. You should eventually have not only a surgeon to ask questions of, but also an oncologist. Make sure you are comfortable with them, and ask as many questions as you can think of. Write them down so you don't forget them. Call their office if you think of more.
    I know exactly what you mean about not knowing how attached you are to your breasts. It was an easy choice for me - lumpectomy and radiation, since the success rate is the same as mastectomy for early stage bc.
    Hang in there. Find out what you need to to feel more comfortable about what's going on. And come back and talk to everyone. I didn't find this until a few weeks ago. How I wish I had known about it three years ago. You're in my thoughts and prayers. Hugs. Donna
  • lynne40
    lynne40 Member Posts: 87
    #18
    Hi Joan,
    I agree with everything said here. ASk, Ask, then Ask more questions. Then You make an informed decision about your care and your body. I had a Lumpectomy last June. My cancer was non hormone receptive and fast growing. No nodes were involved, I got 3 opinions before deciding what to do. I opted for chemo because the cancer was fast growing and on the chance that it was somewhere else in my body I could live with that decision. I opted out of radiation. I spent count less hours reading the studies and radiation didn't seem to be worth the risks for me. My surgeon actually said "sometimes we might be doing more harm then good with 'standard of care' practices" He said he could respect my opinion because it was based on knowledge" I also am at peace that if it comes backi it is not because I opted out of radiation. We are all as different in opinions and outlook as our cancers are. You be comfortable with Your decision. If you are talked into something that you can not live with. you will suffer regrets. Make your decision, accept it and keep living everyday. I pray that you will make the right decision for you, and find peace with that. It gets easier after that !
    Hugs,
    Lynne
  • riley1
    riley1 Member Posts: 2
    #19
    Joanf...another great web-site is breastcancer.org I found it very helpful in sorting through the questions....
  • jake10
    jake10 Member Posts: 202
    #20
    The size, pathology and lymph node status all determine the followup treatments and the choices available to you regarding surgery. With DCIS often a lumpectomy is recommended if they can get clear margins. They will also want to do a sentinal node biopsey. This is a test that verifies the 1st node and they they test it and a few others as well. If they are negative and the lump was smaller than 1cm and the pathology shows stage one with negitive HER2 you may need no chemo and no radiation. Any other variation of results and they will start piling on the followup therapy. ie.. radiation, rad+Chemo ect....
    Alot of info for a troubled mind to take in. Bring someone with you when you see your doctors. I did not and wish I had. You have time so get all the answers you need and then as calmly as possible make your decisions. God Bless and good luck. Beth
  • Watercolor
    Watercolor Member Posts: 45
    #21
    joanf said:

    I am absolutely stunned how generous you folks are with your info and kind thoughts. But I have a question .... everything I've read (and per the surgeon)for my Dx has standard treatment as lumpecotmy/radiation. Marie Lousie... I love that you said the "some would say radiation is overkill". But WHO? Can you direct me anywhere specific? I appreciate the idea of doing the right thing, but my heart really wants to do as little as possible. If I can get away without the radiation that might be a beautiful thing :).

    I was diagnosed with DCIS in November '02. Had lumpectomy, 33 radiation treatments (tomorrow is one year anniversary of last treatment), and have been on Tamoxifen for first of five years. No problems with anything. Had a very easy time with the radiation. The worst of it all is how a cancer diagnosis messes with your mind. (At another web site it is referred to as "cancerhead".) Except for the less and less frequent case of cancerhead, I'm fine today.

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