Cancer? Me? No way....

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LaurieParr
LaurieParr Member Posts: 270

Hello,

I am 45 years old, eat clean, excercise regularly and BC has never existed in my family.  I have however been on Premarin/ Estratest for 15 years due to a complete Hysterectomy when I was 30. I just found out 10 days agao that I have DCIS.

I had my biopsy and now I am getting a dye MRI to determine the type of surgery.  I was also told that I was to stop my HRT's right away.  I am having a hard time finding a forum that can help me with what comes next in regard to HRT's.  It has been 10 days without them and I am already feeling the ill effects of sadness and night sweats.  I am a little scared about my decline without them.

Also, I am a hairstylist and I was wondering about the recovery time if I have a Lumpectomy? I was told one week by my doctor, but the nurse said at least four weeks because of what I do for a living.  My incision will be near my armpit and obviously I use my arms a lot for my job.

Thank you for listening and helping. I am so grateful to have this forum with people that understand. God bless all of you.

Comments

  • ballet12
    ballet12 Member Posts: 981
    edited March 2013

    Hi Laurie,

    Best of luck with the MRI and the surgery.  I have had multiple surgeries on one breast, so I've had a fair amount of experience with this process.  I had four excisional (surgical) biopsies, which is the term used when a diagnosis hasn't been made yet, although it is essentially the same as a lumpectomy (one in this last go around) and two additional lumpectomies to get clean margins.  I have always recovered quickly, even being able to take my ballet class in less than a week after surgery, which does involve raising the arms overhead (surgery on Friday, back in class with modification on Wednesday).  Although everyone is different and every surgery is different, it is very helpful to wear a compression kind of bra to support the breast. Usually they recommend sports bras.  You will also need to ice the area (even bags of frozen peas work well).  You may well find that you will recover earlier than four weeks, enough to get back to even your kind of work, which of course does involve raising the arms a lot. 

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Dear Ballet12,

    Thank you SO much for your reply and information. It is very helpful. :) 

    Would it be ok if I ask you why you have decided to have three Lumpectomy's on one breast? Have you considered Mastectomy or do you have reasons why that wasn't a choice for you?  I'm just trying to gather information and I don't mean to be invasive.  I feel badly that you have gone through three surgeries. :(  It must be very disheartening to have to keep finding Cancer.

    I am so new to all of this and I am grateful for any thoughts you may wish to share with me.

  • SJW1
    SJW1 Member Posts: 244
    edited March 2013

    Hi Laurie,

    Most oncologists will not let DCIS patients have HRT, primarily because of the Women's Health Initiative study that showed an increase in breast cancer in women who were using synthetic HRTs like the ones you were on. However, you can probably find a hormone doctor who will at least prescribe bio-identical progesterone and estriol for you. Bio-identicals, unlike synthetics have the same molecular structure as the hormones your body makes naturally. Studies show both bio-identical progesterone and estriol are safe to use and may even be preventative.

    After reading Dr. John Lee's What Your Doctor May Not Tell You About Breast Cancer when I was diagnosed with DCIS in 2007, I started using bio-identical progesterone cream and later found a doctor to prescribe bio-identical oral progesterone (Prometrium). At the time, a blood test showed I was extremely estrogen dominant. Now that I am postmenopausal, my estrogen levels have dropped and my doctor just started prescribing bio-identical estriol cream for my hot flashes and sleep disturbances.

    My treatment for DCIS in 2007 was a lumpectomy. I elected to opt out of radiation and tamoxifen after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He used the Van Nuys Prognostic Index to calculate my risk of recurrence without radiation as only 4 percent. Although typically radiation reduces risk by 50 percent, with such a low risk, the 2 percent reduction I would get was not worth it to me. Beside, since you can only use radiaition once, I wanted to save it in case I ever got invasive cancer.

    DCIS is a non-invasive cancer that cannot get out of your milk ducts into your breast or the rest of your body. It will not kill you. All treatments are aimed at preventing a recurrence because 1/2 of those can be invasive. Usually even these can be successfully treated with surgery and/or radiation. Because of this you can take your time considering what treatment options are right for you.

    If you have any questions, please feel free to send me a private message. You can also read more of my story at: http://dciswithoutrads.com/

    Wishing you all the best,

    Sandie



  • mdg
    mdg Member Posts: 3,571
    edited March 2013

    I was also 45 and very healthy before my diagnosis....could not understand it.  Still can't over two years later!  I had no trouble getting active again after my lumpectomy.  My incision was also near the arm pit.  I had to start slower but I was back at the gym lightly about 10 days after surgery.  I was on birth control before all of this and had to stop immediately.  I then had chemo and am on tamoxifen so I was pushed into menopause quickly.  I had the hot flashes bad at times.  My doctor put me on effexor which has greatly diminished the hot flashes.  Talk to your doctors about ways they can help with the hot flashes.   I also find that if I eat sugar/processed foods the hot flashes are worse - I don't eat this stuff much but when I do occasionally I notice it is worse.  Good luck!

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    I cannot thank you enough for taking the time to write to me and send me this wonderful, helpful information. I have printed it out and will also research what you have sent me before taking your info with me to my OB. God bless and take care!

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Dear Sandie,

    Thank you SO much for taking the time to write to me and send me this wonderful information. I cannot tell you how helpful it is.I will take your info with me to my OB appointment.  I hope you are doing well now.  God bless you and take care.

  • Annette47
    Annette47 Member Posts: 957
    edited March 2013

    Don't have much more to add, but wanted to say that as another clean living, healthy 45 year old I understand how you feel.   My mother was diagnosed in September, but prior to that there was no history of breast cancer in our family, so being diagnosed a few weeks later than her came as quite a shock to the system!

    As for recovery time after a lumpectomy, I would guess that you will fall somewhere in between the one week and 4 weeks.   My lumpectomy incision didn't bother me much at all after the first couple days, but the incision where they took the lymph nodes from (which was both deeper and closer to the armpit) was more problematic, but I still had full strength and range of motion well within 4 weeks.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Thank you Annette! I truly appreciate your thoughts!  I can tell all of you that 11 days post Biopsy, it is STILL sore and bothering me when I work, so that is why I was concerned about the surgery soreness.

    Happy Easter to all of you ladies and God bless all of you! :)

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Annette,

    How has the Tamoxifen doing for you? I read that the side effects are not fun.

  • Annette47
    Annette47 Member Posts: 957
    edited March 2013

    Laurie -

    I haven't started it yet.  They told me to wait about 4 weeks after rads (to see what SE's are due to what), so I will be starting tomorrow.   I've seen a lot of people complaining here, but I know a few people in "real" life who have taken it with minimal problems, so I think that the people who aren't bothered by it tend to be underrepresented.   Sure hoping I'll be one of them - I'll be happy to let you know!

    Edited to ask - what type of biopsy did you have?   My stereotactic bothered me only for a couple days, but if you had an excisional, that's pretty much a lumpectomy so I would expect about the same type of recovery.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Annette,

    I wish you the very best with the meds. Please do let me know, as I care about you. :)

    I only had the sterotatic biopsy, but the place the DCIS was located was in a bad area (I also have implants) and they really had to pull my breast. I'm guessing it's just exessive bruising inside that is bothering me. When I saw the surgeon and he examined me, he didn't seem to think there was a problem.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2013

    Laurie, just one point to add to the above posts.  Because your biopsy has shown only DCIS and because you'll be having a lumpectomy, I'm guessing that you won't be having any lymph nodes removed.  Lymph node removal is not required for DCIS - this is a signficant difference vs. invasive cancer (and the situation faced by some of the others who are posting) - and not having nodes removed will certainly be a benefit to you in terms of healing and how quickly you regain your arm mobility. I wouldn't be surprised if you do find that you are able to get back to work within a week or at most ten days, particularly if you follow ballet12's advice and wear a compression or sports bra, something that will help ensure that your arm movements don't put any significant strain on your incision.

    Although my diagnosis was mostly DCIS, I did have a microinvasion of IDC (invasive cancer) that was found during my biopsy.  So I had to have my nodes checked. The sentinel node biopsy was by far was the more painful surgery and the recovery period from the SNB was much longer than the recovery period from my MX. Removal of lymph nodes really can do a number on your underarm area and your whole arm.  Many women have tingling and numbness and pain for months, plus anyone who's had any nodes removed faces a life-long risk of lymphedema. In my case, because my DCIS was so extensive, I had to have a mastectomy so even if no invasive cancer had been found during my biopsy, I likely would have had the SNB anyway.  This is because an SNB can't be done after a mastectomy - the SNB process involves injections into the breast so obviously the breast needs to still be there. Because of this, usually women undergoing a MX for DCIS will have an SNB just in case any invasive cancer in found in the final patholgy.  In your case, should your final pathology show any invasive cancer (this only happens in about 20% of cases where only DCIS is found in the needle biopsy), you would be able to have an SNB at a later date. Hopefully that won't be necessary however and your final diagnosis will turn out to be pure DCIS. Good luck with your surgery.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited March 2013

    Thank you so much Beesie,

    VERY good info.  My doctor did say that he will probably check my nodes because of where the inital DCIS was found.  He also said the MRI would help him determine "which" surgery I would need.  Of course I read between the lines here and knew that he suspected there could be more DCIS or worse.  Thank you for helping to prepare me with what I may be faced with as far as recovery times.  I so appreciate your advice and help.

    Have a blessed Easter!

  • stingraysusan
    stingraysusan Member Posts: 9
    edited March 2013

    Just saw your posts and feel in the same "boat". Found lump 1/31/13. Had mammo/ultrasound 2/1/13.  Showed no sign of malignancy.  Consulted two doctors - wanted me to come back in 3 mos. to check size.  My body & intuition told me not to wait so consulted surgeon who wanted to do the same.  I told him to biopsy it and remove it.  A lumpectomy was performed 2/28/13.  At age 60, I feel blessed to have excellent health, eat clean and exercise every day.  Had fast healing and can hardly see the scar now.  Have stayed at 120 lbs. for 2.5 yrs. Diagnosis: DCIS, removed with clear margins (I was awake during the surgery having a local only and heard the path reports come in each time).  Surgeon, on post-op follow up, wanted me to see Radiation Oncologist.  I did, and declined it. Quality of life issue, distance to hospital, no family to help, etc.  Then, Radiation Oncologist wanted me to see Medical Oncologist who gave me Tamoxifen.  My experience this week with Tamoxifen: took the 20 mg. pill one day, woke up the next like I had a college hangover (have not had alcohol in 21 yrs.), the next day cut it in half - half AM/half PM, woke up and felt the same way the next day.  All this week I have struggled to take this drug and only taking 10 mg. of it and feel very aged all of a sudden, started vaginal discharge, heavy and hot legs, nausea, headache and a general feeling of unwellness.  I am going to talk to my regular doctor about this.  If this is doing this to me after one week, what about 5 years?  The Radiation Oncologost/Medical Oncologist gave me conflictiing statistics regarding this drug.  I feel poisoned...already...after one week.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited April 2013

    Stingraysusan,

    Thank you SO much for your post. I cannot thank you enough for sharing your experiences with me. The Tamoxifen info is so vital. I am SO very sorry that you are experiencing these side effects. I truly hope that you can find what works for you. Please keep me updated?



    Blessings,

    Laurie

  • LaurieParr
    LaurieParr Member Posts: 270
    edited April 2013

    Susan,



    Why were left awake during the Lumpectomy? And why Tamoxifen if you "only" ( and I do not mean to diminish the seriousness of it) had DCIS? I thought they only gave Tamoxifen if invasive cancer was found? Please forgive me as I am so new to all of this and I am still learning. Thank you for helping me.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2013

    Laurie,

    Tamoxifen is routinely recommended to women who've had a lumpectomy for ER+ DCIS.  Tamoxifen serves the purpose of both reducing the risk of recurrence, and reducing the risk of the development of a new cancer in either breast.  Whether one chooses to take Tamoxifen is a personal decision. I had a single MX and while I could have taken Tamoxifen as a protection for my remaining breast, in assessing my risk and the risk reduction that I'd get from Tamoxifen, I decided to not take it.  The benefit wasn't worth it to me.  But each of our situations is different - both in terms of our risk levels and in terms of what risk level we are willing to live with - so this is an assessment that we each have to make for ourselves.

    With regard to the node removal, checking your nodes because of where your DCIS was found simply doesn't make sense.  DCIS cannot spread into the nodes, no matter where is it found.  It is not the standard of care to do an SNB on patients having a lumpectomy who've had a biopsy showing only DCIS. In rare cases a surgeon might recommend an SNB because of concerns that the risk of finding invasive cancer is very high, but even then, because an SNB can be done later, the SNB is optional and most surgeons don't recommend doing it at the time of the initial surgery for DCIS.  From your biopsy, what is your grade of DCIS?  And from your imaging, how large does your surgeon believe your area of DCIS to be?  These would be the factors that would determine if you are high risk or low risk to have invasive cancer along with your DCIS.  In any case, given what you do for a living, you should read up on lymphedema, and determine whether you want to put yourself at risk by having node removal when it's not necessary for DCIS.  It's your decision to make, not your surgeon's.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited April 2013

    Thank you Beesie. This info gives me more help in which questions I should be asking.

  • Tamiami
    Tamiami Member Posts: 396
    edited April 2013

    Laurie~  So much good advice so far, but I want to chime in from a hairstylist's point of view.  I had a "golf ball" sized tumor removed from the lower outer quadrant...basically a lumpectomy in 1988, and returned to work in about 1 week.  I had no trouble doing the work and everything seemed fine.  I did develop a large hematoma that opened the incision and needed another week off to let that heal.  Who knows if that would have happened no matter what type of work I did?

    This January, I had a BMX and SNB and ended up off work for 10 weeks.  I PROBABLY would have been able to do the work at 6 weeks post-op had I not had cellulites and LE complications.  I am 13 weeks post op now and still not working more than 6 hour days...I'm used to 10-11 hour days...because it is too much for my arm.

    I wanted to give you both senerio's even though it sounds as if you are leaning toward the lumpectomy if possible.  There is a lot to consider, and thakfully a lot of great information here!  Good luck making your decision, and if I can be of any further help, please contact me!

    Tami

  • LaurieParr
    LaurieParr Member Posts: 270
    edited April 2013

    Tami,



    SO very much for this info!! I can't thank you enough! I am SO sorry that you have had to endure this. I am used to 10-12 hour days as well. I am so concerned about how I am going to "predict" how much time off I will need. As you know, juggling per booked clients can be very tricky.



    Please keep in touch.....



    God bless you and I pray that you heal quickly.



    Laurie

  • Tamiami
    Tamiami Member Posts: 396
    edited April 2013

    I predicted 7 weeks for the BMX...cancelled clients that were already booked and booked out for the time.  This was very stressful for me!  I wanted to call each client personally.  Then the day before I was supposed to come back, I developed cellutites.  Salon had to call and cancel the week's clients.  Then I saw the Dr. every Monday and she would tell me whether I could go to work that week...VERY stressful.  Finally I was able to go back, and I was sooo relieved that my clients were very happy to have me back and not the least bit annoyed!! I decided that this was life's way of helping me become more patient! 

    You will be ok and your clients will be ok!  Don't make decisions based on them...do what's best for you and they will understand!

  • LaurieParr
    LaurieParr Member Posts: 270
    edited April 2013

    Oh my goodness, how stressful that must have been! I too feel as if I want to speak to each of them personally.  We develop such an intimate relationship with our clients.  Thank you so very much again for helping me. :)

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