Confused

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upbeat
upbeat Member Posts: 5
edited March 2014 in Breast Cancer #1
I was diagnosed on Jan 4..had mastectomy Jan 17.
Have appt. to see oncologist Feb 8. I have been reading all of your helpful info but I am still so confused. I have already made mistakes...did not search for best surgeon...took my primary care Dr's referral. Guess I was in shock :-) There was no cancer in the nodes and I was stage 1..good news. My surgeon is not seeing me for a month, tubes and stitches are out. I am experiencing alot of swelling..is that normal? I have done much research on web but have found no info on that. My hormone receptors are positive so I am a candidate for all those drugs.
Everything I have read makes it sound like the cure is worse than the disease. Any advice would be appreciated. I don't even know what questions to ask. HELP!!!

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  • Kitty3571
    Kitty3571 Member Posts: 48
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    Sorry to hear that you recently joined our family - I only had a lumpectomy and am ER & PR negative so I can't give you any advice on those particulars but I can tell you that being in shock is defintely normal. When I was diagnosed I didn't even cry - all I could do was what the docs were telling me at that time. I didn't think to check around for a 2nd opinion, shop docs or even gather more info - It was ultrasound & biopsy on a Friday, diagnosis that Monday and surgery less than a week later. Didn't even have time to "think about it" Just went with the flow of things. After surgery and during recovery I started to read a bit of the box of materials they gave me. It was information overload, I was exhausted by it all and at the same time still in shock that this was happening to me. Was it real? Just be careful of all the info out there - It can be really confusing and everyone you speak to has their own ideas and advice, everyone's a doctor, right? It's good that you are searching for answers - I hope & pray that you find the correct information for your diagnosis. My thoughts are with you! Kitty

    The only other thing I would suggest that really helped me with information is to join a support group - I didn't go to a meeting until aprox. 5 or 6 months after this all started and now I can't imagine missing a meeting. I only go once a month but it sure helps a lot to talk to other women who have actually gone through it, even more helpful than talking to doctors. You find out what is normal, what to expect and so on first hand! Good luck!!!
  • Susan956
    Susan956 Member Posts: 510
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    Dear Upbeat,
    I like Kitty can't give you any advice on the recovery from the Mastectomy, as I only had a lumpectomy. But if you truly are Stage 1 with no node involvement you may be through the worst of your ordeal. You may be able to avoid chemotherapy. By the way I think most of us stubble around to begin with. I too didn't shop around for a surgeon, just went to the one that my Ob-gyn recommended... and as it turned out it was just fine. Between getting the biopsy and getting the results, I did lots of local research on Oncologist and then got the advice of my Surgeon. I first picked a hospital (one that was associated with a major Cancer Center in the country) and then I looks for Doctors with that association. As it turned out I got a wonderful Oncologist. I think early on it is so hard to make the best decisions... but I think that in the end we normally manage to do just fine.

    As for the cure being worse than the disease... No... with the treatments I intend to be on this earth for a very long time.... My Onc got me to think of treatment as a time when I would have to slow down so I could make it to the second half of my healthy life.

    As far as the types of questions. I would ask the Onc to tell you what the most aggressive treatment method would be and the risk of recurrence and then what the typical treatment method would be and what the risk of recurrence would be. It may help you choose which type of treatments to go with. Also, if at all possible take someone with you when you go to the Onc. Two sets of ears sure hear better that one set... and at this time of your life the answers you are getting can be more than a little overwhelming.

    Best of Luck.

    Take Care... God Bless...

    Susan
  • cabbott
    cabbott Member Posts: 1,039 Member
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    Being diagnosed with cancer is a shock to everyone who experiences it. I was first diagnosed in August of 2002 and I still remember the days of pure terror that followed. Nothing that bad happened (well, I too had a mastectomy and lots of doctor visits!) but I was so very scared for what seemed like days on end. It took talking to lots of survivors and educating myself about my particular kind of cancer before I began to relax enough to sleep through the night and get through the days without crying. Stage one is great news! The oncologist will base what medicines you need to beat this beast on the pathology report. He will look at the size of the tumor, how aggressive it appeared under the microscope, what kinds of cells it contained, whether it is estrogen negative or positive, whether it is HER2Neu positive or not, and whether the nodes were infected with cancer or not, among other things. You already know you are stage one with negative nodes and that you are estrogen positive. These are great indicators. Depending on the size of the tumor and its aggressiveness, you may only need tamoxifen (if you are pre-menopausal) or something like exemestane or the like (if you have ceased having periods). Yes, these drugs will probably give you hot flashes and a few aches and pains, but for most folks they aren't that bad. I've been on both that I mentioned. Morning stiffness that lasts a few minutes when I get up and regular hot flashes have been the worst problems I've had. (I wait for the hot flashes to get out of bed so I don't get cold feet!)Tamoxifen lowered my cholestrerol level, so it wasn't all bad and of course it was supposed to lower my chance of reoccurance by 50%. I haven't had chemo, but several of my friends have. They had more troublesome side effects, but nothing that couldn't be managed. Chemo was strong medicine for a serious problem. One of the teachers at my school managed Friday chemo sessions every few weeks during the school year and only missed two days the entire year. Yes, she napped on the weekend, but that was a small price to pay for good health in the long run. So don't be overwhelmed at the side effects of the cancer meds. The oncologist has to tell you about them, but when he does, realize the worst problems occur infrequently and there are ways to treat problems when they occur. Having nurses and doctors you feel comfortable talking to will help a lot. I'll be thinking of you. Good luck!

    As for the swelling, show it to the oncologist. I had a fair amount of puffiness which eventually resolved on its own. The surgeon said that he could drain it in the office if it was significant. He preferred not to drain it if it could resolve on its own because of the possibility of infection. After about a month it did seem better. I was not to get fitted for a mastectomy bra and prosthesis until the surgeon okayed things about a month after surgery. I could wear a batting-filled "pillow" that fit into a very soft mastectomy bra they gave me on the day of surgery, so my clothes fit okay. I recall thinking then that the mastectomy bras were too tight, but now I'm used to them.
  • OregonSeaStar
    OregonSeaStar Member Posts: 41
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    I, too, want to welcome you to this site, but am truly sorry that you have to be going through this.

    I thought I'd address your question about the swelling. I had a mastectomy on September 13, 2006. For the first week, the swelling was very bad. I had been warned about this, so didn't think much about it. What really worried me, though, was that the bruising got so much worse every day until the black and blue seemed to be creeping around my side to my back . . . . .THAT'S when I called my surgeon. As it turned out, I was bleeding under the skin and had to go back into surgery to have the whole area cleaned out again. Again, I was told to expect the swelling to be fairly bad for 'a while.' After about 6 weeks I had an appt. with my primary doc and asked him to check the swelling to see if it was normal. At this point the swelling seemed to have shifted from one part of my incision area to the opposite side of it. The doctor said it was very normal and I could expect to have swelling for about 3 or 4 months, with some areas very hard to the touch and some not. It's now been 4 1/2 months since surgery for me, and all my swelling is gone along with the bruising and the hard/firm areas.
    A mastectomy requires the surgeon to do a lot of 'trauma' to the area and it takes a while for all the tissues left to react and then calm down. DO call your surgeon, though, if anything at all come up that worries you . . . . . its his job to decide what is normal and what sounds/seems out of the ordinary.

    So many factors go into who has a hard time with the 'cure' and who breezes through all treatment. No two people react the same, even if they are getting the same treatment. Age, attitude, general overall health, stress factors, diet, exercise, weather, work/jobs, family, friends, faith . . . . . . all of these and more affect how one deals with or reacts to treatment.

    I'm 57 and vowed to each of my children that I will be around to dance at all my grandchildren's weddings. That's a lot of FIGHTING, a lot of 'cure.' And it's definitely worth it.

    Hang in there!
    -shelley
  • 24242
    24242 Member Posts: 1,398
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    IT is normal not to be seeing oncologist for this time period since nothing can be done till you have healed more. Your fortunate to have had surgery so quickly but treatment fase is a bit of wait since healing is important before breaking down immune system.
    I am 10 year IDC breast cancer stage 3 survivor with 11 out of 21 positive nodes yet negative for hormone. I think it is important to realize that swelling will be a bit of problem since the surgery was so evasive. If swelling continues you may need to have area drained again and if bothering you I wouldn't hesitate to go see someone.
    I think mastectomies limit the cells left so that we minimize our risk factors for a reoccurance. Depending on your age also would determine this as well. I was 36 at time of diagnosis and type of cancer very aggressive which seems to be case with younger women, unless caught early enough. I myself took any treatments offered since I was fighting this disease I wanted every percentage possible for my survival. I decided if I was going to fight this I would fight with all my might and do whatever I could to minimize my risks for occurances.
    Being good to yourselves is sometimes the best that we can do.
    Tara
  • LesleyH
    LesleyH Member Posts: 370
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    Hi and welcome. As everyone has said, what you are going through is normal. Swelling is normal. Scared me as well, but it gradually lessens. Please be sure to do those exercises they give you. They really help. If you are ER+/PR+, you might not need chemo. Depends on your age and the grade of the cancer. If you need chemo, write back and we will give you tips on surviving and thriving at that time. If you are not post menopausal yet, you will either be given Tamoxifen or an Aromatase inhibitor and something to shut your ovaries down. Talk to your oncologist about this. You also need to ask whether you are Her2 positive or negative.

    Anything else I can help you with, please just write. I am 2 years out and have done a lot of research.

    Hugs.

    Lesley
  • upbeat
    upbeat Member Posts: 5
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    Thank you so very much for all your good wishes and helpful information. It is really great to hear it from the "horses mouth" so to speak :-)
    I am 76 years young, very healthy (otherwise), very active, an artist (thank God it's on the left side), and generally optomistic. I look at this as a bump in the road but insist on being informed and hopefully make the right decisions. I was given the choice of a lumpectomy with 8 wks. of radiation, or a mastectomy. I just don't have time to go to radiation every day for 8 wks. so I chose the mastectomy. Now comes the confusion. Thank you again for helping that!! I am so glad to have found you all.
  • carmon
    carmon Member Posts: 5
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    Hey upbeat, i was diagnosed on 10/20/06; had mastectomy on 11/9/06, at stage 2 because the tumor was over 2 cm long but lymph nodes are fine, have had 2 of 4 chemos and I still have swelling. I asked my doctor about it and she said its muscle spams. In cutting the lymph nodes a nerve was cut. The body has to re-wire that nerve so the feelings can come back. Sometimes it takes the body longer to do this than we would want. I have found it helps not to wear anything on that arm, no jewelry, watches nothing. Stretching exercises will help but I have been so blah from the chemo that I havent been able to get started yet. Also, my surgeon said hot pulsing showers and massaging the area with cocoa butter will help as well but I havent tried the massages yet. I cant bring myself to look at my scar yet. The hot shower does help. While under the shower try moving your arm around. Are you still wearing that uncomfortable bra from the hospital? If you are, take it off. Get you a good exercise bra but make sure its not too tight. Also, dont sit, stand or lay in the same position too long. Its important to move around even if its just going from one room to another. You are probably going to have to go through chemo. My doctor tells me the treatment depends on several factors including age, stage, have you been through menopause yet. I had the same thoughts too about the invasive treatment. We can refuse treatment but I have spent the last 18 years not having a life to raise my daughter as a single parent. I'll be damned if I am going to be robbed of my chance to enjoy live by anybody or any thing. I hope this info helps and please let me know how you make out. Carmon1961
  • cabbott
    cabbott Member Posts: 1,039 Member
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    carmon said:

    Hey upbeat, i was diagnosed on 10/20/06; had mastectomy on 11/9/06, at stage 2 because the tumor was over 2 cm long but lymph nodes are fine, have had 2 of 4 chemos and I still have swelling. I asked my doctor about it and she said its muscle spams. In cutting the lymph nodes a nerve was cut. The body has to re-wire that nerve so the feelings can come back. Sometimes it takes the body longer to do this than we would want. I have found it helps not to wear anything on that arm, no jewelry, watches nothing. Stretching exercises will help but I have been so blah from the chemo that I havent been able to get started yet. Also, my surgeon said hot pulsing showers and massaging the area with cocoa butter will help as well but I havent tried the massages yet. I cant bring myself to look at my scar yet. The hot shower does help. While under the shower try moving your arm around. Are you still wearing that uncomfortable bra from the hospital? If you are, take it off. Get you a good exercise bra but make sure its not too tight. Also, dont sit, stand or lay in the same position too long. Its important to move around even if its just going from one room to another. You are probably going to have to go through chemo. My doctor tells me the treatment depends on several factors including age, stage, have you been through menopause yet. I had the same thoughts too about the invasive treatment. We can refuse treatment but I have spent the last 18 years not having a life to raise my daughter as a single parent. I'll be damned if I am going to be robbed of my chance to enjoy live by anybody or any thing. I hope this info helps and please let me know how you make out. Carmon1961

    Have they changed the recommendations for avoiding lymphedema (arm swelling after a lymph node operation)? Even though I just had a sentinal node operation with the breast operation, the surgeon and nurses warned me to avoid showers hot enough to make the skin turn pink (my favorite kind) because it attracts lymph fluid and may cause swelling. Long soaks in hot tubs were also off limits. There is a long list of other things to avoid, but I wonder if I can go back to hot showers safely or not. What's the research say?
  • OregonSeaStar
    OregonSeaStar Member Posts: 41
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    cabbott said:

    Have they changed the recommendations for avoiding lymphedema (arm swelling after a lymph node operation)? Even though I just had a sentinal node operation with the breast operation, the surgeon and nurses warned me to avoid showers hot enough to make the skin turn pink (my favorite kind) because it attracts lymph fluid and may cause swelling. Long soaks in hot tubs were also off limits. There is a long list of other things to avoid, but I wonder if I can go back to hot showers safely or not. What's the research say?

    In September I had a mastectomy with the sentinal node and two others removed. I was told not to worry about lymphedema, that I wouldn't have a problem with it. I've taken lots of hot, hot showers, had blood drawn from that arm all through chemo, and wear a medic-alert bracelet all the time on that wrist that has a stretchy band. I've had no problems with lymphedema at all.
  • deb2001
    deb2001 Member Posts: 23
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