Nurses with Breast Cancer

It is good to find other nurses who are dealing with BC. I have a unique position as I am the breast cancer nurse as well as a survivor. I found it hard to return to oncology after my DX. But it has been 3 months sent I went back to work,  I feel like I give so much more to the women I treat since my Dx. I find it hard sometimes to separate the nurse from the patient. I feel this experience has made me a better oncology nurse.  I  found that my DX was hard for some nurses to work withme.I Found most of the staff were supportive and helpful. Listen to your heart and work in a area thast makes you feel supported and strong and worth while. anne

Jo_Ann_K - Thanks for the information.  I was a little worried based on all the side effects on the Effexor bottle but it sounds like you have done well on it so I will probably give it a try.  They have me taking it once per day and I can increase to twice if I need to.

I am new to this post:  I am an RN working for an insurance company in the last 10 years; now on disability from Stage IV-mets to the liver.  I have Hope that I will beat this monster and consider it only as a stumbling block.  However, I am not sure what is next since working for the insurance company has opened my eyes on the injustice given to members who use this HMO.  I would love to stay on disability and volunteer time to the community since I have done case management during my tenure with the company.

I have been a member of BCO for approx 6 mos but not using the site lately since I got kicked off for a few days with no real explanation.  Now and again I come in and peak, read, look for info- every few days.

Hello all!

Hi Ladies,

Another nurse here. Had bilat mast and implant reconstruction in Jan 2008. Am getting close to the end of reconstruction. One more procedure to go in Jan. and hopefully I will be done then. All the times that I was in the hospital having tests and surgeries done I did not tell anyone that I was a nurse. I would tell my DH not to tell them that I was a nurse. All the other nurses will not talk around you nor will the Doctors. I found out that my DCIS was pretty extensive when the Radiologist was looking at the computer screen when I was in the mammogram machine and she was talking to the tech in the room. You can usually find out a lot by all the chatter around you in the hospital. Nurses are really careful around othere Nurses who are patients.

Kerry

Hi Kes welcome to the board.  Glad to have another nurse on here to compare notes and chat with.  Unfortunately for me the hospital I use everyone is pretty tight lipped and keep their mouths closed so I didn't get any information except when the doctor called, but then again all my paperwork did have I am a directors of nursing.  You have to list your profession, maybe they were that way on purpose.  LOL!  One of the biggest challenges I faced and continue to face is that they (the other medical professionals) seem to assume that I know everything and they explain little or nothing.  It rather infuritates me at times. 

Renee

I am not a nurse, but I've wanted to ask this question for months, but didn't know where to ask.  If you have your surgery at a teaching hospital can you request/demand that your chosen BS & PS do all the work - that the fellows & interns only get to watch?

I just found this thread and I am so relieved to find out that I am not the only nurse to get the "we didn't tell you because you're a nurse and we figured you already knew."  I am still so angry about having to be my own nurse through the whole surgery/rads/rads complications/mastectomy process. 

One thing I didn't find out until too late is that permanent tattoos for rads are NOT necessary.  The techs can use markers and "touch up" the marks as needed.  I've paid over $500 gettng those ugle marks removed by laser treatment.

I now get my onc care at a center 90 miles from home, where no one knows I'm a nurse. I teach nursng, so I just put "educator" in the occupation box of any forms.  I, too, have to be very careful not to use medical terminology when I ask questions, and it gets dicey when I'm not told about something that I do know I should be told about--do I ask and give myself away or live with the uncertainty of not knowing? 

I was working for the hospital system where I got most of my treatment, and I was treated horribly--to the point that I filed 2 complaints with the Joint Commission.  Then the hospital withheld by earned time payout for 3 months after I was let go (FMLA ran out due to the delay getting me into rad tx).  Totally ruined my financial standing and credit rating and it's going to take years, if ever, to repair the damage.  I don't where there anymore, but when I do run into someone I know I still hear, almost 3 years later, about how difficult a patient I was in radiology.  "Demanding" and "unrealisted expectations" are the most common descriptions I hear.  Of course, throughtout the whole thing I never say a nurse, just technicians,  Maybe if there had been a nurse there things would have been different. . . .

I too went to the city for my surgery, but I have been receiving chemo locally.  It does make for a difficult situation when they make a mistake and I have to say something to them, but I am getting chemo every week, and I really don't want to have to drive an hour every week for tx.

NativeMainer:  They get really mad when you turn them in to Joint Commission and find a way to get back at you.  Unfortunately it sounds like that happened to you.

Mainer,

That is just awful treatment. Totally unethical of them to do that to you.Crappy for sure. 

I just love Maine. We vacation on Bailey Island every summer. I just love it there. Peaceful place.

Renee,

I found that they do not tell you a thing if they know that you are a nurse. "She's a nurse, she knows it all"  You miss the simple basic post op teaching. I think that I scared my homecare nurse post bilat mast and TE. I basically did the dressing changes, and she didn't even have any supplies in her car truck. I had to go to my car and get supplies out of my trunk. I also do homecare visits. And this was my second day post op. Please don't come to do a dressing if you don't have any supplies. DDUUUUUHHHHHHH!!!!!!!

Kerry

Tall order, 2 hands4me!   Some info I wish I had early on:  ALL of the recon options, not just the local ones, a list of PS who did each of the different recons and how to get in tough with them, sorted by state (I have to go out of state for really up to date stuff), how to get an insurance case manager, web addresses for the various treatment calculation/decision making sites, meaningful recurrence and mortality statistics by stage, detailed descriptions with photos of the tests (MRI, CT, PET, ulstrasound, needle guided biopsy, quadrantectomy, lumpectomy, mastectomy, SNB) with realistic info about the pain involved and how to get adequate pain management. A note that radiation permanently damages normal tissue no matter what the rad onc says.  A note that chemo side effects can be and often are permanent.  Clear stats comparing chemo and estrogen blocking therapy as well as combined therapy.  To ask for oncotype testing, and what it is and how to get insurance to cover this "experimental" test,  Info that 'breast conserving" treatment is the medical community's choice, but if you would feel more comfortable having a mastectomy you are not making a "bad" or "wrong" choice. 

Hi everyone - a nurse here with bc too!  I've been a nurse for 5 years now - went to nursing school at 30 after working in the business world.  I work on a telemetry floor as a staff nurse and relief charge nurse.  I work PM's - have been on disability since February of this year - went on maternity leave, now I will be taking more disability to deal with this horrendous disease.  I also work per-diem at Children's hospital in utilization review - it's eye opening seeing what insurance companies nit pick about.  Hoopefully we can get this thread going - will read the last 10 pages as well!

Labor and Delivery nurse here,  worked nights for about 10 years, have now switched to a day shift 1 year ago.  Diagnosed 2 years ago, no chemo, had rads, now on tamoxifen since Nov 2008, perimenopausal.  My Onc laughs when I come up with suggestions or tell him I don't want certain treatments (have no desire to ever take the AIs) and he attributes it all to me being a nurse, but most of it is from the extensive research I've done on Breast cancer since being diagnosed!  I really knew nothing about the treatments before this happened to me. 

I've now added 1000 IU of Vit D to my daily regimen after having a level of 27 last year, got it up to 35 this year and hopefully it's still rising.  I also drink green tea, take flaxseed and some soy, products, try to eat organic as much as I can afford, buy dairy without the growth hormones injected and do yoga and workout as much as I can.  None of this was recommended by my Onc, or known by me ahead of time, all because of reading forums on here and reading some of the scientific articles on the internet.  

Peg--you said it.  When I got rads they actually never scheduled patient education BECAUSE I am a nurse and "already know everything you need to know."  Now I don't allow the fact that I'm a nurse go into my records at all.  That way I can be more sure I will get the information I need.  I just cannot be a nurse to myself successfully. 

Update:  had my last pre-op appointments done yesterday (autologous blood donation, anesthesia stuff, etc) for my bliateral reconstuction on June 21st.  I am exhausted physically and emotionally today, and not going to do anything except play with the new dog and drink lots of iced tea and cold water.  Housework and every other d@#ned thing can wait a day.  Currently in year 3 of lupron/arimidex and wishing I never had radiation.  

I'm a med/surg/onc nurse.  After surgery, I spent 2 nights on my own unit, and it was WONDERFUL.   My BF is a float nurse at the same small hospital, and she spent those two nights in a cot in the room with me.  I have to say I wasn't treated like a nurse by the staff, but like a cherished friend.  They did laugh at me some when I insisted on d/cing the foley myself--wasn't too interested in having a coworker perform that service for me.  And for my part, I did my best to talk incessantly when they were trying to auscultate my lungs.  We also had a good laugh, because staffing accidentally scheduled me to work the day I went in to surgery, and it took a bit of scrambling to cover for me.

You're so right about not seeing the post-hospital follow up care.  I knew vaguely about seromas, but it took several of my nurse friends who were coming over to my house for my dressing changes to make me acknowledge that I had developed one.

Treated like a nurse: Sometimes I don't get the explanations I need, but often it seems I get too much standard explanation.  It's hard not to break in and say, "Come on, I know this stuff already."  I work hard to "play patient" because I'm afraid if I interrupt the spiel, I might miss out on some information that I really needed.  I sure do know how to ask questions, though, having worked so hard helping patients ask their own questions.  I do worry my colleagues will think I am stupid, but unfortunately, the "impressing others with my smarts" ship sailed a long time ago, and although I am a bit of a moron, maybe I get points for smart questions.

I was in the process of getting "chemo certified" when I was diagnosed, and I tried hard to continue at work (thinking I "only" had DCIS, with no chemo in my future) and continue training, but I was stress stupid.  As surgery neared, I didn't think I was a safe, smart nurse, and I stayed out.  Now when I think of receiving the infusions that I was learning to give--and suffering the SE's I was educating and medicating others for--I am shocked and appalled.  I don't think there is any way I could drum up the mental sharpness and physical stamina and emotional reserves to work while I'm undergoing chemo. Plus hospitals are so full of germs.

I'm a fairly new nurse--graduated in 2006, as a 44-yr-old.  Worked nights for 3 years, only on days for a few months before dx.  One of my fellow grads, a wonderful friend, worked nights only a few months at the beginning, but was dx'd with IDC a year ago.  My BF has worked nights--loves it--for at least 10 years and is fine.

If you work in oncology then you know the questions to ask and you do have the basic info you do need.  When your speciality is neonatology, it's a different story.  I haven't had any preemies with breast cancer, and I didn't even have a clue what questions to ask.  I expected to be put to sleep with gas and have the IV started after I was asleep for my first surgery (that's what we do for basbies who need surgery or procedures) and was terribly surprised, frightened and upset when the 3 nurses tried 3 or 4 times each to get an IV started and no one explained what they were doing or why.  I'm glad you were treated well, I really am.  I wish I could have been treated half as well.