Re: breast cancer/radiation/pain pills/ anesthesia.

[Guest guest]

Kay:

I would definitly discuss your options with your anesthesiologist. You need to

be educated for yourself on what to choose. Remember to ask lots of questions

if you do not understand. You can also ask your neurologist about radiation and

how it effects CMT and your body.

Marin

[Guest guest]

Hi ,

I don't have a neurologist...

Thank you for your thoughts -)

Kay

[Guest guest]

Hello Kay,

Wow, certainly alot of options. I encourage you to go within your 'inner self'

in meditation so that your true spiritual self can guide you in the right

decisions.

About the anesthesia: Talk to the anesthesiologist several days before surgery.

Mention your breathing (I seem to recall you use a Bipap) because this may be an

indicator of what anesthesia and delivery system is used. There are different

ways to anesthesize, so by being upfront with the doc, you'll get what's right

for you.

Also, in my experience with the last surgery I was asked to stop taking all

anti-inflammatories and all vitamins and supplements, as they can negatively

affect the anesthesia and your body while under. (this meant no Naprosyn, pain

meds or Vitamin E for me) So I would ask both your surgeon and anestheologist

about this before hand.

Most likely you'll feel more weakness and fatigue after the surgery (normal for

anyone) and also weakness and fatigue from radiation. This is a resource for you

to look through. http://www.webmd.com/breast-cancer/guide/treatment-side-effects

As for pain meds, if you have pain, take them. I know of none that are

contradicted for CMT, so the field is open, unless you know you are allergice to

something. Following surgery, I was on Percocet, then Ultram, then completely

off all after 1 month, with no negative effects.

I wish you all the best in decision making and a full and speedy recovery.

Gretchen

[Guest guest]

Hi Kay,

 

So much to do and so little time!

 

You have some difficult decisions.  Have you been seen by an oncologist?  An

oncologist may help you understand the potential risks of radiation (to

skin/bones, etc.), as well as the advantages/disadvantages of having a

lumpectomy vs a mastectomy based on your individual circumstances.

 

Here's some information from the Komen site, addressing this question:

 

http://ww5.komen.org/Content.aspx?id=5450 & terms=partial+OR+full+OR+mastectomy

 

Here are some other sites that address this question as well:

 

http://www.breastcancer.org/treatment/surgery/mast_vs_lump.jsp

http://www.mayoclinic.com/health/mastectomy-lumpectomy/bc99999

http://www.center4research.org/bc071502.html

 

For you, there are other factors to add into the equation, including:

-  If you have the full mastectomy with reconstruction later, will you be able

to maintain use of one of your arms through the process?  If so, will this make

it easier on you to get around and care for yourself?  

-  If you have the lumpectomy, will you physically be able to make it to

radiation 5 days a week for 6 weeks, or whatever frequency they recommend?

-  In other words, what's the easiest and most effective overall treatment plan

when weighing not just the medical implications but also the physical challenges

and emotional components? 

 

Your surgeon and oncologist should be able to talk through these things with

you, based on your individual circumstances.

 

They should also be able to talk about pain medication options based on your

health history and the extent of the operation they plan to do.  I've had

surgeries where all I needed was aspirin or Tylenol afterward and then other

surgeries where I needed much stronger meds.  A lot depends on the extent of the

surgery and your own pain threshhold.  A factor for consideration is the

addictiveness of certain meds.  If possible, it's best to avoid very addictive

meds, like Oxycontin.  Many people have become addicted to this med just using

it for a short time after surgery.  And for you, another factor to consider

is whether or not the meds will depress your breathing, because many of them

do.  Bottomline, your doctors should prescribe what's best for you, given your

health situation, and how you feel (or are likely to feel) after the surgery.

 

If your surgeon hasn't helped you enough or you're not completely comfortable

with the direction to take, you can request a second opinion, so you can speak

with another doctor about it.  A second opinion will not be offensive to your

doctor.  Second and even third opinions are very common in cancer situations.

 

You may also want to consult with your neurologist as well.  If you can't get an

appointment in time, you can request a phone conversation, so you can discuss

your options.  Worst case scenario, you can fax them a letter asking that he/she

'clear' your treatment plan.  I do that with my doctor, just to make sure he

approves whatever I do, and he doesn't mind.

 

With regard to anesthesia, your doctors should explain

the advantages/disadvantages of local and general.  Some people prefer to be

knocked out, others prefer to stay awake.  I had knee arthroscopy under local

anesthesia once and it was torture, but I've had other less invasive surgeries

with local and felt nothing.  Just depends on how deep they are going, what type

of anesthesia meds they are using, and your own response to the meds.  It's

really a personal decision after weighing all the pros & cons.

 

If you decide on general, you may be able to speak to the anesthesiologist now,

to make sure he/she understands your medical condition and your family history. 

However, sometimes, the surgeon doesn't know exactly which anesthesiologist will

be on staff at the time of the surgery, so you might not be able to speak to

him/her in advance.  Nonetheless, the anesthesiologist will generally come to

visit you just prior to going in the operating room, so you should have an

opportunity to discuss your history and concerns then.  You may want to write

down or print out any important information you want to convey, so you don't

forget what to say.

 

With regard to recovery and home care, do you have a case manager?  If not, you

may want to contact your insurance company and request one.  The insurance

company may not normally assign one for this type of surgery, but they will

usually do so for a case that is complex.  So, you may need to explain the

complexities of your situation and tell them why you need the services of a case

manager right now.  The case manager should be able to help you arrange for home

care.  Perhaps they can help you with a hospital bed rental and lift chair

rental for one month.  You should also be able to get visiting home nurses.  For

example, perhaps they can send someone twice a day, once in the morning to help

you get you dressed and in a chair and once in the evening to lift you back into

bed.  Maybe even a physical therapist in the middle of the day to move your arms

and legs.  They can bring you an elevated toilet seat, a raised shower chair,

etc., or

whatever will work. I don't know your situation or capabilities or healthplan,

so I'm just throwing out ideas.  Bottomline, I would convey the challenge you

have to the case manager right away, so they can work out a solution for you by

the time you get home.

 

It's a lot to think about in a short period of time.  Just take it one step, one

phone call at a time.  Let minor stuff...like the housecleaning go.  It can wait

until you are well.  Just focus on the important things...like resting and

evaluating your options.  If there's something we can do to help, please let us

know. 

 

[Guest guest]

Kay:

I wonder why you don't have a neurologist if you have CMT? I would think it is

very important for your care.