Dmh987's Journey:

Survivor: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma > Triple-Negative Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 7 years ago, Female, Age: 57, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
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    Diagnosed

    Oh No

    May 2010, Breast cancer, left breast. Triple negative, (slightly estrogen positive)

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  2. 2
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
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    BRCA positive

    Oh No

    May 2010... Doctor recommends bilateral Masectomy. I don't think I can do it.... I would get so depressed. Been there done that. Don't want to go there again... Only need a lumpectomy to treat the cancer I have, bilateral is for reducing the high risk for the future, need to think on this....

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  3. 3
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    What surgery? Lumpectomy or bilateral?

    Decision Point

    Early June 2010... Time is running out, I have to do something to get rid of the cancer I have. Have decided to delay the ultimate decision on bilateral. Everything is going too fast, so the doctor and I agree, that I will have the lumpectomy, and move on to the chemotherapy, I will need to make my final decision before having radiation.... As reconstruction options get complex after having radiation.... What a relief.... I can start some treatment.

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  4. 4
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Lumpectomy

    Procedure or Surgery

    June 2010, Had lumpectomy with sentinel lymph node biopsy. The lymph nodes were clear. I sent the majority of the lump to Rational Theraputics for testing. They do testing of chemo drugs on your live cancer cells in test tubes, then recommend which drug, or combination of drugs would work best based on how well you cells died/reacted to the test. Their web site is http://www.rational-t.com/default.aspx My sister who had exta ovarian primary peritoneal cancer had this testing done and I felt it had helped extend her life. So I wanted the same bennifit. It was not covered by my insurance. I did pick an oncologist that would work with me based on the results from this organization.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    July 2010, Oncologist wanted to start chemo just before my 50th birthday in July. I said "No, waiting one week wouldn't make a difference." The doctor agreed, maybe couldn't understand, probably most people are anxious to start, but I saw my sister go threw this and I really didn't want to be tired and nauseated on my birthday, and the date she was suggesting would likely have the "bad feeling" time right around my birthday. So, I started my chemo, the week after my 50th birthday. My family (large) all took me out to dinner. My boyfriend and 7 of my 9 living siblings were there as well as many nieces and nephews. My deceeded sister's husband and here two children were there also. (I am single/divorced with no children.) This was a great time.... It has been a while since I went through this, so I went back to my emails and have copied info here about how the chemo went. On Saturday, November 20, 2010, D. Wrote.... J, Thought you may like some of the prior updates since they have a hint of the long funny stories that Lori use to tell..... Enjoy!!!!! D.... PS: thanks so much for the help with the lawn guys.  My outside looks so much better and I am so much happier with it.  What I didn't put in the other e-mail is how my spirits have been up and down over the past month or so.... And having help like yours has been such a godsend!  Right now I am feeling in much higher spirits and I am hoping that will continue now that the chemo is behind me.... Sent from my iPad Begin forwarded message: From: D. Date: September 1, 2010 7:00:18 PM EDT To: family & friends Subject: Re: Chemo today OK.... so some know how things have been going but many others don't, so I will send this update to all.....    Generally the chemo is going fine for me now... and the doctor thinks that will continue....   The first round was difficult mostly because I didn't know what to expect and how to counter the effects.  So now that I know things like: 1) The Neulasta shots that I get the day after chemo (white blood cell booster - to help fight infection) kicks in for me on the following Monday..... and that it causes inflammation of the joints, which causes achy joints, and for me --- the hips and spine end up giving me sever pain like when I had back problems..... So... when that happened the 1st round I didn't know what was going on, and it got really bad and I, well I mean K. called the oncologist on call  (K. actually came down as I could barely move because of the pain) and we found out that I needed to take 3 Advil and keep taking them on an 8 hour schedule (well I found that part out from the nurse the next day)....  I didn't believe the doctor.... I kept asking, can I take my pain killers from my surgery if the pain doesn't go away... he said give the Advil a try, and if it doesn't work yes.... well the Advil worked within an hour....   Oh yeah..... with the pain I was panting like a pregnant woman.... even when I was talking to the Doctor... and when I was doing that with each pant, I would repeat the word I was saying.... LOL 2) I learned that they don't staple the sheets together when they give you the instructions.... so when I had the diarrhea, ummm, I pulled that sheet out of my RED folder and I read the whole sheet and all I found were food remedies.... nothing about over the counter medicines that were safe to take.... now this was the night after I called the oncologist on-call about the back pain..... panting and repeating words..... so I thought..... hmmmmm do I really want to ask him about diarrhea meds..... I thought .... hmmmm I think I can wait until the morning on this one.... SO... I called the nurse in the morning and she said, well on page 2 of there is listed the meds you can take..... I thought... there wasn't a page 2..... I just told here I didn't see it.... Well the recommend Imodium, but all I had was Pepto-Bismol, she finally said yes I could go ahead and take that.... so I was good to go there.... I have since gotten Imodium as I can just swallow that, much better than chewable Pepto-Bismol....  I went back and looked and indeed there was a page 2, it just wasn't attached to the first page.... LOL-not.... I also found that the Constipation instructions was also 2 pages... both are now stapled.... 3) I also found that it is really kind of hard to tell the difference between nausea and heartburn sometimes... what is making your stomach felling that way...  well on the second round of chemo, I finally decided that during the second week I was getting heart burn almost with every meal I was eating, so now I am on Prilosec OTC daily. 4) I also learned that I don't apparently listen to my answering machine enough.... with the iPad, I am pretty much constantly checking my e-mail.... so that probably is the best way to remind me of anything.  On the iPad it is so easy to in and out of my various e-mails, and since I am using it always at work, I check it constantly during the day and I even take it upstairs with me because with my work schedule, I usually check e-mails when I wake up and then leisurely get up and then I go to work.  (how is that for a run on sentence....LOL)    So the basic routine is I get my chemo treatments on Wednesdays (like today) and the Neulasta shot on the next day.  Then I am on "low" energy for the next 7 days, so Thursday after Chemo to the following Wednesday. This is probably due to the Chemo and the Neulasta shot side effects.  Then the turning point has been the that following Thursday.... something kicks in (maybe the white blood cells... who knows) and then I have a good day followed by a good week.  SO then the next Thursday then things start to build up to what I would call NORMAL/Great....  So when I get to the weekend before chemo I am have a fair amount of energy... Only to go back to the chemo week and get knocked down again ..... BUT.... the good news in that..... The doctor is very pleased with my blood counts and thinks I am doing very well on the treatment!!!!!!!  After the first one, I have been going by myself as I really don't get sleepy from the Benadryl, and the accommodations are so bright and cheery, it doesn't bother me.  Today I met a woman there for ovarian cancer and we talked most the time, so that is kind of therapy for me.    My work schedule pretty much goes like this: I take the whole day off on the chemo day, then 1/2 day on the next two days, then the following week I work between 6-8 hours a day (more like 5-6 in the beginning of the week and 7-8 for the second half of the week). then I return to 8 hours.  I rarely work more than 8 hours which is a big change for me. I think yesterday was the first day I worked 10 hours and I was really tired when I got home.... (then there was that midnight run mentioned in the below e-mail.... LOL).   Oh... I almost forgot to mention..... (see how imporatant it seems to me?)   Yes I have had my hair shaved off (with clippers) as my hair started to fall out pretty heavy.  Right now I have some stuble, but not nearly as much as when it was first shaved.  I have purchased two wigs at Kay's Wigs on Colrein (great place to get to wigs quickly and they really know how to get the right one for you). I also purchase 2 more wigs on-line (at headcovers.com) as well as few BeauBeau® head scarves (at 4women.com).  I think because when I was on Coumadin for my blood clot I lost some hair and it got thinner, this was not as traumatic for me?  I don't know, because back then I wondered how bad it was going to get.... Anyway... I am dealing with it fine... I can now spice up my life by changing my look with the wigs.... LOL....  The wig I wear to work most people have just notice a slight color change and slight style change and when I tell them it is a wig, they are a little surprised... of course they know very well I could loose my hair so it is not a total surprise...   As a final note, my spirits are high and things are really going well..... so don't worry about that.... having such a great family and friends for a support system helps so much with that...  I want to thank you all for that as well....   Love, D. On Wed, Sep 1, 2010 at 10:33 AM, D. wrote: C, Thank you for the voice mail reminder to take my anti-nausea medicine on Tuesday night.... I picked up the message along with the nine other message that were there since friday ummmm this morning.... Wednesday...... LOL..... Apparently I forgot to listen to them since then..... LOL.  (Amy, sorry for not calling you back to... Same reason)..... First off, I did take my meds, so no worry there, but maybe I need to change the reminder request to remind me to refill my prescription too.... LOL..... Here's what happened.... The "L" version.....  I was going to bed (11:15) and needed to get a new box of prilosec (now on for duration of chemo), and I thought, oh yeah, I need to take the anti-nausea meds... I went to the kitchen counter where I keep them..... And then realized.... Shxx I didn't refill them...  At first i was thinking, i wonder if taking them first thing in the morning would work as that was when my normal pharmacy opened..... Then my brain came out of chemo mode and i thought... Oh i wonder where the closest 24hr Walgreens pharmacy is? (as that is my pharm.)...Thank goodness for 24hr pharmacies and electronic transfers and web refills.... I was just able to get on Walgreens website and ask for the prescription to be refilled at a 24hr store!!!! Which also had a drive thru so I didn't even have to get out of my car..... And My dog loved the midnight ride!!!! LOL LOL Coming to you from the lovely chemo suite while I wait to get hooked up...  Got to love the iPad... Thanks for everyones thoughts, concerns, and prayers...

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
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    Masectomy or NOT?

    Decision Point

    November 2010... Decided against doing the Masectomy. It is recommended to reduce the risk of reoccurrence for BRCA1 patients... However, I feel that I would not be able to psychologically deal with the situation at this time. I have been talking over with my therapist for months now and even don visualizations and scenario visualizations where the cancer does come back as stage IV... I still feel that I don't want to have the mastectomy and want to do surveillance. Again, here are some e-mails from that time period..... On Friday, November 12, 2010, D. wrote: F&A I trust in the decision I have made... my therapist and I have gone through all the scenarios and I am comfortable with where I am at.  Time will tell if something changes in my life that will lead me down another path, but for now I know this is where I need to be and I am fine with this decision. I too look forward to seeing you all in December.... Love, D. On Fri, Nov 12, 2010 at 1:16 PM, F. wrote: Hi D, I hope you can just trust that you have made the right decision.  This is not something that can be decided on a logical basis, in my opinion.  I think it has to be an intuition or "Higher Power" based decision and then trust that the right decision was made.  So I would recommend that you don't keep trying to second guess your decision - just trust that the right decision was made and move on with your life.  Good luck with the radiation therapy.  We look forward to seeing you in December. Love, F&A On Fri, Nov 12, 2010 at 5:37 AM, D wrote.... A small update on me... Last week I finished my last chemo.... I have pretty much decided to not have the double mastectomies for now and will move on to radiation after Thanksgiving... That will probably be 7 weeks of daily radiation (5days a week). I see the radiation oncologist the Monday after Thanksgiving to discuss/consult. The decision making has been rough.  I know that I can still change my mind even before the radiation, but I think that is doubtful. I may end up changing my mind a few years down the road I suppose, and if so, that is fine, it will just mean a more involved reconstruction on the left side. Love D Sent from my iPad

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  7. 7
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
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    External radiation

    Radiation

    December 2010, This went fairly well for me. I however am a very busy person perfessionallly and yet a home body at heart, so my biggest issue with the radiation was the daily treck to the radiation office for treatment. I honestly would rather have gone through chemo treatment on a three week cycle again and deal with the side effects at home, than to be bothered with the daily trips and interruption in my work schedule for 6 weeks in a row. Again, information from emails to my family and friends at thr time...... From: D Sent: 08 December 2010 03:52 To: family & friends Subject: Re: Update.... All, I am now onto the next part of my treatment. I saw the radiation oncologist last week for a consultation as well as what they call a "simulation".  I really liked the radiation oncologist (Dr. P). He took the time to explain everything and to answer all of my questions.  Finally the night before my appointment with him (on 11/29 - Monday after Thanksgiving), I did my research on radiation. So most of what he reviewed with me I already knew.  So last Friday, I had my simulation session.  That is when they precisely identify the area where I will receive the radiation. They have marked me with "sharpie" permanent markers.  There is a mark on each side below my armpits. and then a set of marks between my breasts that are "--- X ---" vertically......  These marks will allow them to ensure that I am in the same position during every treatment.   They may put different marks at my next "dry run" on Friday.... The "--- X ---" comes pretty high, so I can't wear some of my lower cut blouses.....lol....(too bad for JB).... So based on the CT Scan that they took the doctor (with computer assistance - lol)  will do calculations that will determine where/how the radiation will be given (treatment fields) This Friday, I have a second planning session that will verify the whole plan setup in the treatment room. X-rays will be taken to make sure that all of the calculations/setup are correct and additional markings (as I said) may be made to better define the confirmed treatment fields. I will be receiving 6 weeks of treatment, 5 days a week (Uhggg).  The first 5 weeks will be the same treatments, and the 6th week will be booster treatments.  The boost is targeted to the area where the tumor used to be, where the other treatment is done to the whole left (in my case) breast area. Since I had no Lymph node involvement, I don't think my lymph nodes will be covered but I am not sure (I guess that is a question for the doctor). SO....as long as the "dry run" goes well on Friday, my first treatment is scheduled for next Monday morning, 12/13. Then the rest of the treatments will be in the afternoon at 4:40pm.   Right now this is the best schedule they could come up with for my work schedule (and sleep schedule..... LOL... we all know I am NOT a morning person....)   The good thing is that the treatments should only be 15-20 minutes after the first one, which may take about 45 minutes.  The actual radiation is only about 2 minutes, the rest of the time is setting up to ensure I am in the right position.... I guess I don't know how many days I will miss for holidays (or not), so I will be finishing up sometime close to the beginning of the week of Jan 23rd... One of the "good" things is that I have been really feeling good lately. I have been busy with work and have gotten caught up in work, which is kind of a good thing as it feels good and I enjoy it. I am still being able to enjoy the time away from work and I really enjoy relaxing and doing my crochet which I really picked up during my chemotherapy time...  I really find crocheting to be very soothing and relaxing. Thank you all for your thoughts and prayers! Love, D --------------------------------------------------------------------------------------------------------- On Sat, Nov 20, 2010 at 1:53 PM, D wrote: I realized I haven't updated all family and friends on me in a while...   My last last chemo was on November 4th.  I will move on to radiation after Thanksgiving... That will probably be 7 weeks of daily radiation (5days a week).  From what I understand so far it will be short treatments once the markers are determined for how the radiation will be given.  Meaning the treatments may take as short as 5 minutes. I see the radiation oncologist the Monday after Thanksgiving to discuss/consult.  That is when I will really know what will be done. So for now I am focusing the next few weeks on getting stronger. I am feeling better each day.... Of course the longer one is away from the chemo the better one feels.....   Sorry... No funny and long "L" stories this time... Love D Sent from my iPad

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  8. 8
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Lost loved one

    Loss

    My Aunt R. Died in Jan 2011... I was just finishing up my Radiation Treatments. She had been undergoing Chem for Lung Cancer, but had discontinued due to Heart Issues. She was also my God Mother. This was very hard on me....

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  9. 9
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Fatigue (tiredness)

    Side Effects

    Late Jan 20111, Fatigue hits hard near the end of the radiation...... Again, from my history stash of emails: -----Original Message----- From: D Sent 2/20/2011 12:00:38 PM To: "Family & Friends Subject: Update on me.... Hello all I am sorry that I haven't updated you all in a while, and many of you know this update but many may not..... I finished my radiation, on January 26th. However that is when the fatigue from the radiation really hit. I started to fall asleep about an hour after getting home from work... as soon as I sat down in my recliner I would get really tired. So I would start to make sure I got to bed by 8:00 or 8:30 at night at the latest, otherwise I would find myself sleeping in my recliner until 1 or 2 in the morning and then going to bed at that time. This lasted about 2 weeks before starting to get better. Now I am able to stay awake usually until 10 or 10:30 most of the time, which is still very early for me since I am use to staying awake until 11:30-12:30.....  I am a real Letterman fan and missing his show is really disappointing for me.... This early to bed is so very very different for me. Just last night, I guess I was more fatigued than I thought, as I started the day at about 8:30, went to the Bakery to order some custom cookies for a work event on Monday, then to my niece J's Volley ball game, then to breakfast with my tennis friends.  My friends couldn't believe that I had actually been up and done an errand and seen a volleyball game already.... AND THEN I went shopping for some more things for the work event for Monday.... I didn't get home until 3:00, then I put together a LapTop table I had order through the mail.... then heated up some dinner, then started to watch some TV to relax.... Well.... actually to relax my back as putting the table together on the floor had really gotten to my back (as many know I have a bad back).....  I had the front door open for my dog to go through the doggy door in the storm door..... and I promptly feel asleep in my recliner... it probably was around 9 or 9:30 at night.... I didnt' wake up until 1:30 in the morning..... and when I went to go upstairs I realized I didn't even have the storm door locked.... OMG......  I was just SKYPE'ing with my cousin R in Germany and he said to let him know the next time I did that and he would send a burglar around to fetch my iPad.....lol.... as many of you know R hates the iPad as he is a Microsoft geek.....he then went on to imply what things he was going to do with my iPad once he got it and the results were "not going to be pretty".....LOL OK.... and for the dog lovers..... I know..... It was also irresponsible of me to leave my dog with the ability to go outside that late at night.... especially in the winter.... I slapped my own hand on that too...... I couldn't believe it... especially this morning when I realized, I had taken his shock collar off when he was trying to scratch his neck last night.... He could have roamed the whole neighborhood!!!!   bad bad bad on me.... thank goodness he is OK....  I really think that he stayed in all night....  I hope.... I didn't hear him bark and go outside, so I think he didn't go outside... Anyway.... So the doctor says that the fatigue lasts 4-6 weeks, so I guess I have at least 2 1/2 more weeks of this, but I hear from others that have gone through the radiation that it can last longer than that... maybe up to 6 months.  and some have said that some form lasts forever at some level.  I guess I will just see how it goes for me.  I do feel that the fatigue that I am feeling now is from the radiation and not the chemo. I think the fatigue I felt in the beginning of the radiation was from the chemo and going back to work pretty much full time. Then there was a short period of feeling OK, then the really bad fatigue hit.... On the other hand the "burns" from the radiation are healing nicely.  They are just a medium brown now... During the radiation, I started to get the redness from the radiation in the usual spots, in the arm pit and under the breast. they started to get red probably about 4 weeks into the 61/2 weeks of radiation. I had 30 treatments, 5 days a week, with 3 holidays, so that is why it was 6 1/2 weeks instead of the normal 6 weeks.  Anyway, I was lucky that the areas only got to the red stage and did not get to the point of having bubbles and pealing during the radiation.  Also, any slightly brown spot got really brown.  After the radiation was stopped, the brown areas pealed some, or just flaked off.  The areas are much lighter now, but they are still much darker than the other side of my body. It will take some time for that to go away. The only other thing that remains is some sharp pains in the breast, but that is normal as well. The pain is from nerve endings according to the doctor... so if that gets too bad I just take some Advil and it seem to subside. I think that my support group thinks I am crazy, cause I still say that I think I would rather do the Chemo again rather than the Radiation. I really hated the daily trips for the radiation.... to me that was very stressful.... and the annoyance from the burns of the radiation and having to deal with that daily was to me worse than the inconvenience of the feeling slightly sick from the chemo every 3 weeks, even though that lasted 18 weeks verses the 6 weeks..... the frequency and constant interruption of your life with the radiation was just so much worse to me. And I don't know maybe the comfort of having a "buddy" like my Aunt R to share our Chemo experiences with was helpful..... and to go through the pain of her death one week before the end of my radiation treatment kind of colors my feelings of each too...   I miss my Aunt R so much.... She was my Chemo pal....(-:I love you Aunt R:-) I think I am going to end here....  I will send out more updates as I continue to heal in body and spirit.... Love D.

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  10. 10
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Finished treatment

    Celebration

    Sept, 2011, Cancer treatment has been done for a while now. I have become part of the local FORCE group in Cincinnati. One of my major celebrations was the following, as documented in an email sent to my family and extended family.... On : 9/17/11 D wrote TO:Family All, Monday, September 19 Astros vs. Reds 7:10 p.m. ET  PreGame Passing of the Torch Ceremony   This is a fun event..... At the Reds game this coming Monday night. I have been asked to be a member that is on the field representing the the hereditary link between breast and ovarian cancer and a breast cancer survivor. I have to be there by 6:15, and am unsure when the pre-game ceremony takes place.... Obviously, sometime well before 7:10...    If you want to attend, my immediate family and friends will be in section 416 rows L and M seats 20-24 if you want to get close and/or visit. There is a link in the email below During an on-field, pregame Passing of the Torch Ceremony, a flame will be passed from an ovarian cancer survivor to a breast cancer survivor marking the transition from Ovarian Cancer Awareness Month (September) to Breast Cancer Awareness Month (October). This event highlights the hereditary link between breast and ovarian cancer, honors cancer survivors and those at high-risk (previvors), remembers those whose lives have been lost to cancer, and recognizes families that have been affected by cancer. If you plan on attending and have any questions, just let me know.... email or call  my cell or home   Thanks, Love D

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  11. 11
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Cancer is back/Recurred

    Oh No

    Late Oct, early November 2011, I was going to a program on transitioning from treatment to recovery. It had some exercise as a part of that, and I started to have some lypmphedema occurring in my left shoulder. I was also going to physical therapy at the time. I noticed a small pea size lump, and ask the therapist what she thought. The long and the short of it, I called my oncologist about the lymphedema and the lump that I felt. The nurse called back after the weekend and I said that the lump seemed to disappear but the lypmphedema was worse. She and the doctor sent me to see a lymphedema physical therapist specialist. I couldn’t’ get into her for 3 weeks, and when I did the lump was back and she sent me right back to the oncologist doctor, who then sent me to my breast surgeon. I was put on some antibiotics, but they didn’t reduce the size of the lump so, it was biopsied and was found to be positive, and was fully triple negative this time (last time there was just slight estrogen positive). The surgeon thought it was likely a new breast cancer as it was in a totally different area (although in the same breast). Here is some emails to my family during that time: --------------------------------------------------- On Sun, Nov 20, 2011 at 8:14 PM, D wrote: Well, This is another update, but isn't good news, but is news that I figured that I would have some day.... I have another occurrence of breast cancer in the left breast (same as last time).... I just didn't think that I would have this news this soon. The breast surgeon indicated that while we will not know for sure either way for sure, she thinks that this may be a new occurrence as this is in a different location. I am having the surgery tomorrow morning November 21st. After the last year and a half of being in support groups for cancer and BRCA (Hereditary Cancer), I feel that I am in a much better spot to deal with this surgery now. Below are the details (that have been going to the immediate family this week)..... I just got the diagnosis this past Tuesday.... Sorry for the late update, but it has been a hectic week.... to say the least....lol Love Debbie. ------------------------------------------------------ Subject: Surgery 11/21/2011 From: D Date: Wed, 9 Nov 2011 22:53:09 -0500 To: Family & Friends I am going to have my ovaries (and fallopian tubes) removed, an oophorectomy, on November 21st. It is an outpatient procedure with a 2-4 week recovery. It will be done at Good Samaritan Hospital by Dr. B, who did A's surgery. This is just a preventative surgery.... Sent from my iPad ------------------------------------------------------------------ On Thu, Nov 17, 2011 at 7:25 PM, C (sister) wrote: D asked me to send this update out to siblings. She met with her surgeon today to discuss options for the lump she found in her breast. She has made the decision to have a double mastectomy with reconstruction surgery to be performed at a later date after her chemo therapy. Her surgery start time is the same - Monday, November 21, the removal of her ovaries / tubes will begin at 9 am and last approximately 1 hour. Her double mastectomy will begin immediately after that and will last two to three hours. She will be spending Monday night in Good Sam hospital and based on how her surgeon feels she is progressing with drainage / pain level she may go home Tuesday afternoon or if too much drainage / pain she will spend another night in the hospital. We will send out text messages / phone calls Monday morning to let you know where in the hospital we are and give updates. If you have any questions please call. Cindy --------------------------------------------------------------------------------------------- On Fri, Nov 18, 2011 at 12:30 PM, D wrote: OK, So I talked to the Nurse at the Breast Surgeon's office and Good Sam does the Sentinel Lymph Node injections differently and so the schedule is as follows: I still have to be there at 6:30am, at 8:00 am, they will do the injections with the dye to start the process for the sentinel lymph node biopsy on both sides..... They will wait the 3 hrs for the dye to travel before they will let a surgeon start.... So.... at 11:00am Dr B. will start the Oophorectomy and at Noon, Dr M. will start with the Sentinel Lymph node biopsy, followed by the bi-lateral Mastectomy. (which will last about 3 hrs.) I will still spend the night. IT WILL BE A LOOOONNNNNGGGG DAY...... SO BRING books to read or cards to play if you are planning to come....LOL..... (S, C will take me to the hospital if that is OK with you.... you will be able to get more sleep if you want then..... Let us know what you want to do....) Love D.

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  12. 12
    • Dmh987
    • Experience with Triple-Negative Breast ...
    over 4 years ago
    Dmh987's Avatar

    Mastectomy

    Procedure or Surgery

    November 2011: Decided on a Double Mastectomy. Had figured out over the past year that if I did have another occurrence, I would likely have a Mastectomy, and a Double one so that I would reduce the chance of reoccurrence as much as possible. So there really wasn't much of a decision. Spoke with the surgeon on the phone the evening before and then met with her in her office the next day. The outstanding question was about the oophorectomy. She thought that perhaps I should put it off, but I was certain that I had put it off long enough, and unless she could come up with a good reason why I shouldn't have it done, I wanted to have that done as well. Her only reason was if it would get too complex. I asked her what would make it too complex, and she talked about people who had had cysts and other issues with their ovaries and such over the years. I had never had any of those types of issues, so we decided the risk was minimal. The surgeon was then wonderful and moved mountains of red tape and paperwork to get appropriate temporary privileges at the same hospital that my ONC/GYN was at, and at the same scheduled time that my oophorectomy was already scheduled for, so that we could do the Mastectomy and oophorectomy as quickly as possible (the Monday before Thanksgiving.... It was really the only way to get the surgery scheduled that quickly. From emails..... On Sat, Nov 26, 2011 at 7:32 PM, D wrote: Hi all, The week has been progressing, and things have been getting better for the most part. I had a great thanksgiving dinner cooked by my sister C. That night however, we noticed that the left side chest seemed to be more red than the right, and while the nurse had indicated that was good (as that was the side I had two incisions on) and showed blood flow, I started to get concerned. We called the doctor's office the next morning like we were instructed but the voice message I received was their normal in the office voice message (even though we knew no one was working that day) so I just left a message and hoped that the doctor got it. I did this twice..... Then later in the day, after their normal hours, I called back and it was in the out of office mode at that time and so I had a choice for where I could leave a message for the doctor specifically... Well, she called me back very quickly. She apologized a few times about the phone system..... After she took my information, she put me on antibiotics and made an appointment to see her in her office the next morning (Saturday) at 9:30..... Now how many doctors would do that these days? So we met with her this morning and she thinks that the area didn't look as bad as we had described it the night before...... C and I told here that it has gotten better since being on the antibiotics. Anyway, she is pleased with what looks like the amount of oxygen that is getting to the area and is keeping me on the antibiotics since there can be a tendency for infection in situations like this. I hope all obstacles are cleared up this easily and quickly...... So after the appointment with the doctor, we went shopping to see if I could find some short sleeve shirts that button up the front (cause the hot flashes are really getting to me now.... After the Oophorectomy .....lol. I didn't know that it would get worse than what I already had!!!! LOL) We also went to breakfast at I-HOP.... I just got up an hour ago from sleeping for 3hours and dozing for 1hour..... Guess I did just a little bit much.....lol Thanks all.. Love D

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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