Doctors don't seem to care..

InTheWind

I've been trying to reach my surgen for several days with no response given.  I was scheduled to have a lymph node biopsy surgery but it got cancelled when the found a left bundle branch block in my heart during my pre-surgery physical. I got the ok for surgery after the heart ultra sound. Then when they called me to reschedule the surgery they pushed it out for 17 days.  I have been feeling pain in my left breast just like I did in the right before it indented. I do have cancer in both breast but the left was was further behind then the right.  I emailed the doctor and said can we spead this up and just do the masectomy on the 21st and byopsy the lyph nodes during the surgery. He said he would if I agreed to a delayed reconstruction.  I have been emailing him for several days to try and get mor information. Finally I sent this: (what do you think? Has anyone else had doctors that just don't seem to give a shit?)

To:

PHILIP NEFF, MD

From:

Michelle Skolyak

Sent:

2/11/2013 12:23 PM MST

Hi Dr, Neff. How long would the delay in reconstruction be if no cancer is found in my lymph nodes? I need to know what is going to happen on the 21st so if the mastectomy is going to be done without reconstruction I need to find where they sell the bra inserts. And if the reconstruction delay will be a long time even though there is no cancer found in the lymph nodes I need the information to decide how to proceed. Also, I need the research information on this type of cancer as far as the likeliness of spread if chemo is not done. If it hold a high chance then I would like to go ahead and get the mastectomy done the 21st and start the chemo shortly there after so I can get past this year as quickly as possible.

When they called me and told me they found cancer and gave me the name of it she flat out told me to google it. I know several people who had breast cancer and none of them had to fight to get information from their doctors. I don't understand a lot of stuff in this case. This may be just another day to everyone at Kiaser as you have many cancer patients but you all need to understand this is new and very serious to me. I feel like Brandon and I are alone out here fighting this cancer and not getting help, information, or any support from Kiaser.

itsjustme10

Have you gotten a second opinion from a different surgeon?  One you might have a better personality fit with?  That's why I would do...it's a business, and you're the consumer, so if you can't get in touch with the doctor, find one you can get in touch with. Good luck!!

dlb823

Hi, Michelle ~ Wow, it sounds like you have a considerable information gap that is really adding to your understandable anxiety.  I'm so sorry that your surgeon or his office has put your in this situation.

Many women have delayed reconstruction.  It wouldn't be my preference (if I had a choice), but sometimes it enables you to start chemo (if needed) sooner, so in some instances it can actually be a better choice, depending on your initial stats (type of bc, size of lesion(s), etc.)

As far as whether or not you'll need chemo, that's normally determined by the Oncotype-DX, a test they will do on the lesion(s) they remove.  And as far as when you'll start chemo, that depends on how quickly your surgical wounds heal.  There can't be any open wounds when you start chemo, so usually anywhere from 4 to 8 weeks, but you can't rush it if you're not healed from surgery.  I personally had to wait almost 12 weeks due to an open wound.

What information do you have from your biopsy?  Did they biopsy both breasts?  Are you doing a bi-lateral mx?  Does your surgeon have a treatment coordinator you can possibly call about your surgery scheduling and other questions?  From my experience, surgeons probably don't have adequate time to respond to emails, so I'm afraid that what you've written may not get an expedited response.  I think you'd be better off  talking to someone firsthand for answers to where they stand in getting your surgery scheduled, and your options for reconstruction.  

(((Hugs))), and let us know what you find out.    Deanna

PS ~ I totally agree with itsjustme about finding another surgeon and getting a second opinion.  I'm just not sure with Kaiser if you have that option, but it wouldn't hurt to find out.  

InTheWind

Thank you for you help and insight! The email worked. Dr. Neff's nurse contacted me and she had breast cancer 12 years ago so she knew exactly what I was going through.  I think I will let Dr. Neff do his job but when I need insight and advice I will contact the nurse with experience - plus all of you! ((HUG)) My surgery will be the 18th. They will remove both breast (they both have cancer in them) and do a lymph node biopsy at the same time. Reconstruction will be delayed and chemo will start shortly after the 18th. I think two weeks after.  The nurse was awesome!! If any of you have an incling for the medical field please get in the cancer centers. Your insight from experience will help a lot of newbies.