2nd time breast cancer. Need new BS. Dallas, Texas

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  • woodstock99
    woodstock99 Member Posts: 338
    edited July 2016

    Wanted to pass this along. I met Dr. Nguyen for a consult and he's excellent. I hope you never need him but this is a great opportunity for Q&A on LE next Tuesday night. Hope to possibly meet some of my BCO friends.

    image

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  • VLH
    VLH Member Posts: 1,258
    edited July 2016

    Thanks for sharing that, Balthus, although I agree that I hope we don't require his services!

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  • DebHen
    DebHen Member Posts: 16
    edited July 2016

    Ladies,

    Thank you so much for your support and I am happy to report that I made it through the radioisotope injections on Friday with minimal pain! The EMLA cream worked well and Ashley, the nuclear med tech, was amazing. I am beyond thrilled to be past that procedure. SLNB went well, except that I am experiencing some tightness and heaviness in the chest and Dr. Leitch had me go to the ER this morning. Nothing was found so I don't know what is up with this.

    Pathology on Thursday at post-op. Appointments with Dr. Spangler, RO and Dr. Haley, MO on Monday, June 25th. Has anyone had any experience with these two ladies?

    Thanks all.

    Debb

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  • VLH
    VLH Member Posts: 1,258
    edited July 2016

    I've heard that Dr. Haley doesn't have the best bedside manner, but is an outstanding oncologist.

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  • Lunderwood
    Lunderwood Member Posts: 125
    edited July 2016

    Debb - Good to hear that and SLNB went well but hope that your chest pain and heaviness goes away quickly. I had an consultation with Dr. Spangler in January. At this point I have not needed a RO but will definitely use Spangler if radiation is needed at some point. She was great - very easy to talk with and spent extra time just reassuring me and answering my many questions. My MO is Dr. Froehlich at UTSW. I also highly recommend him, great bedside manner, very calming personality. I have heard that it's difficult to get an appointment with Froehlich right now because he is covering for another MO. Let us know how your appointments go.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited July 2016

    I did not need an RO but a few friends used Spangler and heard very positive comments. I did not care for Dr Haley regardless of her reputation and switched to Dr Froehlich. There are also a few excellent MO's at Texs Oncology at Presbyterian. Glad the SNB went well

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  • DebHen
    DebHen Member Posts: 16
    edited July 2016

    Update: 4 Sentinel Nodes removed, pathology: all negative.

    Met with Drs. Haley and Spangler at UTSW MO recommended an aromatase inhibitor for 5 years which I will start after radiation. Anyone have an experience with taking one of these?

    Four different options for radiation presented: 6 week, 3 week, one time and none. The last two are studies/trials. A lot to take in. Anyone participating in a trial?

    The latest hitch - a seroma. I had it drained on Wednesday but it came back the very next day! Very, very uncomfortable. I know these can happen and multiple draining is sometimes required. The nurse says they don't keep draining unless they are just too painful. Can't see surgeon until August 9th. Can anyone weigh in on this?

    Thanks.

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  • Lunderwood
    Lunderwood Member Posts: 125
    edited July 2016

    DebHen - That good news on the pathology results!

    I have been taking Arimidex (anastrozole) and Faslodex (fulvestrant) injections for 7 mos. I participated in a clinical trial before my surgery which is continuing after surgery. I will be on Arimidex for 5 years and the Faslodex injections for 18 mos. I have had very minimal side effects, a few mild hot flashes (I am post menopausal so had been past all that fun for a few years) and some nausea (I just make sure I have something on my stomach when I take my meds). I also have osteopenia so will also be getting prolia injections to offset potential bone density loss. This was my greatest concern since this is a potential side effect with both drugs.

    My experience with the clinical trial at UTSW has been very positive. I believe I have received a higher level of care by having another set of eyes reviewing my tests and keeping track of my treatment. The research program assigned an oncology nurse who meets with me prior to my appts. I tell everyone she has been my "guardian nurse angel". I will add that both the BS and MO approved the study before I decided on participation. There were several treatment options (similar to your multiple options for radiation) and they assured me that whichever treatment I received would meet their "standard of care" level.

    I am sorry about your seroma, fortunately no seroma's so far for me. I imagine it is very uncomfortable and Aug 9th seems so long to wait. Is there a risk of infection? Hopefully someone else will have some advice.

    Thanks for keeping us posted! Take care!

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  • VLH
    VLH Member Posts: 1,258
    edited July 2016

    Great news on the nodes, DebHen! I have what I assume is a seroma over my sentinel node biopsy site. Icing doesn't seem to help much. Is that where yours is located? Even with the second surgery related to the DCIS discovery, my incisions don't look bad. Good luck with the hormone therapy.

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  • DebHen
    DebHen Member Posts: 16
    edited August 2016

    Hello ladies!

    Saw the breast surgeon yesterday and the pesky seroma is still there. So, the plan now is to drain it yet again next Wednesday. I have read that there is a risk of infection from multiple draining, but I am going to proceed with the second draining. I have also just discovered that I have developed cording or auxillary web syndrome. So very frustrated by both these developments especially since I only had 4 sentinel nodes removed and was not expecting to deal with these issues.

    I got a referral for a lymphedema specialist and I have set up a consult and 6 therapy sessions, as both the seroma and the cording are considered risk factors for lymphedema. Both situations will delay the start of radiation if I choose that route over the no radiation clinical trial.

    Lunderwood: Thanks for all the good feedback on the clinical trial. I thought I detected a note of disapproval in Dr. Leitch yesterday when I mentioned the no radiation clinical trial - I'm hoping I was mis-reading that? Since radiation is typically the protocol for a lumpectomy, foregoing radiation is a risk and kinda' scary. I too have concerns about bone density and joint pain, which are side effects of the aromotase inhibitors - hot flashes too, which have come back with a vengeance since I had to stop hormone replacement therapy with the breast cancer diagnosis.

    VLH: Yes, my seroma was located at the SLNB incision. The hope is that these drain on their own, but as you can see that has not been the case for me. An ultrasound will confirm and the radiologist will use lidocaine to numb the area and use an 18 gauge needle to drain it. It wasn't painful (and you can tell from my previous posts, I'm not that fond of needles!). My concern is now is just how many times this thing is going make an appearance!

    Thanks for all the information - you guys are the best!

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    DebHen, I'm so sorry to hear about the cording and persistent seroma. :-(

    I had my seroma drained last Tuesday. Like yours, mine promptly refilled. I kept my arm clamped down to try to compress the "vacant" area, but the SNB incision proper is in front of the armpit and no good way to compress that area. Mine is now about the size of the top of a grapefruit or softball and I ended up with an infection to boot. I'm now 19 days out and the seroma is bigger, red and angry so that's disappointing. We're singin' the seroma blues. 8-}

    I looked at the UT Southwestern website, but didn't see the radiation trials you mentioned. If I go with chemo, I'm worried about getting radiation in before the end of the insurance year so a shorter duration is appealing. I'm supposedly triple negative now so may not be eligible for either trial since this cancer is so aggressive.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited August 2016

    sorry to hear. I had cording on both arms into chest wall after my BMX also with 4 modes removed. I found a great certified LE therapist on 75/walnut hill who has been excellent resource all around. She also referred me to new LE institute as the doctor came from MD Andersonand is also a plastic surgeon. I do not have LE but trying to stay proactive about it.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited August 2016

    this is the place http://www.lymphinstitute.com/

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  • DebHen
    DebHen Member Posts: 16
    edited August 2016

    VLH:

    Saw the radiologist today and had another sonogram. She said the seroma is getting smaller, so we opted (for now) not to drain it again. If if gets bigger, I'll go back 'cause even smaller, it is driving me crazy! I, too, try to keep it compressed - can't remember when I last wore a regular bra.

    I also picked up the information on the "no radiation" trial. The official name is the IDEA Study (Individualized Decisions for Endocrine Therapy Alone). It is a University of Michigan study that UTSW is participating in. And, you are correct, as a triple negative, you would not be eligible to participate. You must be ER/PR+ and HER2/Neu negative and must have an Oncotype DX score of less than 18 (I'm still waiting on my score to come back). Also, at least 2mm clear margins and aged 50-69 years old, no lymph node involvement and of course, agree to be on hormone therapy. I'm still very hesitant and will wait for the Onco score to make a final decision - they are only accepting 25 participant from UTSW and only 200 nation-wide.

    Consult with the UTSW LE specialist, Beth Daniels, on Monday to try to work on a plan for the cording. I'll let you all know how it goes.

    Balthus: Thanks for the LE specialist recommendation - I may use it if the other doesn't work out.

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    That will be a difficult decision, but the Onco test should help clarify the risks and guide you.

    I saw the radiation oncologist's nurse while I was at the surgeon's office and she said they don't typically do prone / face down radiation treatments. I'm trying to envision the challenges of keeping my heart and lungs safe while dealing my large, saggy bosom and encapsulated shoulder. The graphics and photos I've seen online bear no resemblance to my physique.

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  • DebHen
    DebHen Member Posts: 16
    edited August 2016

    VLH: Yes will wait for the Onco, not finding much on-line to support not having radiation.

    I understand your concerns about radiation and having cancer in the left breast. My half-sister had cancer in the left breast and she opted for a double mastectomy. Keep me posted.

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    I think there isn't a ton of research on not having treatment because there is obviously an element of risk with inaction, but drugs and Rads have side effects so... With many studies funded by drug / medical equipment companies, there's also not typically an upside for them in doing less. Countries with public health programs perhaps have more incentive to explore deferring treatments from a cost savings perspective. I've watched as the pendulum has swung away from doing annual vaccinations for dogs when some veterinarians bucked the trend & questioned whether that practice presented added risks without evidence of a clear benefit for most dogs.

    I was scheduled for a BMX, but chickened out because I was concerned about how I could cope with having temporary limitations in both arms plus the pain and infections associated with tissue expanders worried me. If I didn't live alone, I would have probably gone that route.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited August 2016

    I have been seeing Heather Evans for about 3 months to help me with cording, scar tissue, overall chest tightness, lymphatic drainage, etc. she is wonderful. Highly recommend. https://www.clt-lana.org/therapist-1128/heather-evans.html

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    I'm glad you found some help, Balthus. :-)

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  • DebHen
    DebHen Member Posts: 16
    edited August 2016

    Update: Got the Oncotype DX Recurrence Score back yesterday - my score is 17, which puts me in the low risk category and eligible for the clinical trial, but just barely!

    I also had a CT scan yesterday to see if I qualify for the 3 week radiation protocol - which I do.

    I am so struggling with my decision on what to do? I read about all the very negative side effects of radiation, but then again a clinical trial of no radiation is risky.

    I am just now to a point where I am starting to feel better - seroma is all but gone, been exercising my arm like crazy and it is better. Met with the lymphedema specialist at UTSW yesterday and she confirmed that I don't have it, but we went over some risk reduction practices.

    What to do?

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    First, great news on the low risk finding!

    That's a tough decision to be sure. I've agonized over my decisions every step of the way with this blasted cancer so I'm the last person to offer advice. Keep us posted.

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  • DebHen
    DebHen Member Posts: 16
    edited October 2016

    Update:

    First of all, sorry to be absent for so long - my mom passed away on September 6th, so my attention has been elsewhere.

    I decided to do the clinical trial - signed the consent forms on August 5th.

    Have an appointment with the medical oncologist tomorrow to get started on the aromatase inhibitor - not sure which one she will put me on.

    How are you guys doing?

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    I'm sorry for your loss, DebHen. That has to be especially difficult when dealing with your own health crisis.

    I'm glad that you got into the trial and will be curious about your experience. I know there's a lengthy delay before results are shared, while you'll undoubtedly want to know immediately what they learned.

    My infection from having the seroma drained ended up requiring two weeks of daily IV antibiotics and delayed my chemo by weeks. I just had my first infusion last week.

    Keep us posted,

    Lyn


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  • woodstock99
    woodstock99 Member Posts: 338
    edited January 2018

    my condolences on your loss. It seems to have been a tough year for everyone I know.

    My 30 year old nephew had/has osteosarcoma diagnosed in March and chemo sinxecthen until end of year only interrupted by 24 hour surgery to remove the tumor.

    My mom in assisted living in Florida is under home hospice and in decline and I am headed there next week.

    Somehow though I am trying to stay strong and positive. Still seeing my physical therapist as I am still having scar tissue issues and pain but have gotten into going to the gym 3x a week and started taking a restorative yoga class.

    Coming up on my one year since my "bad" mammogram last October and that hit me hard this past weekend.

    Oddly people who see me tell me how good and healthy I look and I am happy to have committed to (hopefully lifetime) lifestyle changes.

    I stay very busy with work and stuff and wish I still wasn't checking these boards as often as I still do.

    DebHen - Glad you made the trial.

    Lyn - glad you are doing good.

    Still navigating this journey.

    Stay in touch.




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