DCIS questions and confusions, personal stories and issues

terrikoala

Claire,

Oh yes I could use 2 weeks with palm trees and blue waters but with the effects of the rads I fear I will so tired I won't be able to enjoy it. I read that the fatigue lasts a long time after the rads are complete.  Have had the timeshare for 30 yrs and prep and packing alone wears me out even when healthy and there is soooooooooo much walking when down there. Not sure I will have the energy to enjoy and don't want my husband to have less of a good time since he l works hard every day and deserves relaxation.

terrikoala

I had a mini intervention yesterday  about  my not wanting to see the RO and MO next week. My best galpal who along with her hubby came to the  hospital to be with me and my hubby (we share our surgerical experiences...seems to be socialization for we baby boomers the last few years...lol) came over and she brought another friend of mine who is a 5 yr DCIS survivor and just got off Tamox. I got tough love and to sweeten the pot they brought flowers, a card and dinner for my hubby and me.  They saw that I scratched off the appts on my wall calendar and got a bit rowdy and threatened to TAKE me to the appts. So I agreed to go and see what they have to say. RO next Wed and MO next Friday.

Dakota212

Terri~

I agree go see what they have to say..... Then make up ur mind. Good luck

CLC

terri...I am glad you are going to the appointments.  I had a couple of bc survivors around to give me advice and push me to consider certain things.  I am grateful to them for their support.  I did, however, have to be careful not to let them push me into doing things I didn't think were right.  BC is so huge.  It is so personal.  It invokes the deepest values we hold.  Sometimes those values aren't the same as others.  Maybe I should say rarely, rather than sometimes.  Get all the information from the doctors.  Then comes the hard part.  Do what you think is best given that information.  I wish you lots of luck with that.  It is no easy feat.  But, it is important to feel that you have done the right things for yourself, whether they are right for others or not.

And...palm trees sound very good.  If you are tired, maybe you can enlist someone's help.  Frequently, when you have cancer people offer help, but don't know what to do.  If the time comes for packing, and you have had offers, that might be a good time to let them know how they can help...:)  And...your husband may be just as tired after all of this stress and want to sit still and admire the view, and read a good book, quietly with you... 

I am no polyanna.  But bc has forced me to demand that life offer up its best and forced me to grab it.

Dakota212

Clc-

Some great advice !!!

Joycekeisman

beesie, thank you for all that information, it puts things  into perspective

cookie monster, thanks for your personal story,

dakota212, yes waiting stinks,  i will keep you all posted,

thank you all for the information and support.

joyce 

proudtospin

after all my junk, which was 3 lumpies and radiation, I waited 6 months to go on the trip I wanted to take (sailing off the cost of Maine on a windjammer)

unfortunately, I was still run down, came down with shingles and really did not have a good time!  yeap, it takes some time to get your umph up again.

you may want to ask about a shingles shot now...before you get all punkie!  shingles is sure not fun and it slams into folks what happen to be run down

terrikoala

proudtospin...thanks for that  reality check on the timing. I will probably only have a few weeks before vacation after rads if I choose to go that route. I have already had my shingles shot fortunately. Its a nasty thing to have to deal with under any circumstances. My Dad in Law had it really bad for a very long time.

CLC

Terri...maybe the ro and mo would consider doing rads after vacation?  That might be another option on the table...at least maybe you could ask...  I don't know what urgencies exist in your case, but it might be worth a shot.

terrikoala

Good idea Claire

They will have my paths next week when I go to both and we can talk about my options so perhaps it would indeed be ok to wait until I get back. As long as it does not jeopardize the effectiveness of the rads I might just defer it.

Infobabe

 terrikoala

I think they can wait.  And remember, if you are on rads, you cannot go into the sunshine. 

Take the opinion of the RO second to the MO.  The RO has skin in this game.   My RO did everything is his power to talk  me to into having rads.  I told him he should be a lawyer.

Go on that vacations anyway.  You need time to consider your options.  It is funny how sleeping on it and time, sorts everything out for you.  I have solved some very difficult problems just by sleeping on it and now science is showing that your mind is at work when you are sleeping so there is a reason for it.

terrikoala

infobabe,

It was sounding better and better to wait until I return from the island for so many reasons. I looked at the calendar and if I defer the rads (assuming I do them) until we get back from vacation I will be one week shy of completing 7 weeks of rads when the new year comes.  I checked with Medicare and my supplemental about being one week shy of completing when the new year starts AND the both deductibles reset and there is no provision for this so I would have the deductibles in my way for that one last week of rads.  So poo...thats messing up being able to enjoy my trip and then have rads. I can' win!  I would hate to be on the OR table having major surgery on New Years Eve and they were half way done and the clock strikes the New Year so the deductible kicks back in...grrrrrrrrrrrrrrrrr.

CookieMonster

Terri, I suspect it's too late for this now, but you might ask your RO if you might be a candidate for internal radiation. it's usually 5 days 2x per day. It might be better for your schedule if you're a good candidate for it.

terrikoala

Ooooh cookiemonster, that gave me chills when I read about it. Not sure I want any more invasion into my breast at this point. The poor girl is one week out of surgery as of today and needs time to heal and regroup.

Infobabe

 terrikoala

Holy crapola, Terri, why would you have 7 weeks of rads?  

If, indeed, you even need them, internal would be a far superior alternative.  Did anyone ever talk to you about it?   There is Mammosite and SAVI, both one 5 day week, twice a day.  

Is there something going on with your pathology we don't know about?

terrikoala

Infobabe, Had never heard of internal rads before. I have my RO and MO meetings next week so I will now be armed with more information.  I have not gotten my copy of the paths yet and will share as soon as I do.  Surgeon did not mention any thing odd about my paths. He was elated that he got the whole thing out with clean margins and said that the standard rads was 7 weeks when I asked if I would  still need it.  My 5 yr DCIS survivor friend had 7 weeks but told me about friends who got boosts during rads that shortened the length.

I now have my eyes set on post-vacation rads so need to work with them for the best option for me that will have a completion date no later than 12/31/12.

Infobabe

terrikoala

Listen to what they have to say but you need a second opinion. 

proudtospin

I did the 7 weeks, I asked about the shorter versions but was not considered a candidate do to the amount and the layout of the junk

I think you should put all the thoughts on the back burner till you see the docs, if you think then you need a second opinion, do so but doubt that it is a rush for now,

listen to the docs~~do not go shopping for a decision that is convenient to vacations~~

Infobabe

 proudtospin

Yes, that is important.  The DCIS should be all located in a small area.  If it is all through the breast lumpectomy alone will not sufice because they cannot get clean margins. 

proudtospin

I think when you are making a possible choice between a breast conserving lumpectomy and the more extensive mastectomy, it is good to consider the quality of the surgeon, the facility and their success or failure with lumpectomies

I am lucky, in NJ I had the choice between many centers and many docs.  Lordie but I could have gone to Mem Sloan Kettering or University of Pa or many others all within a couple of hours of me.  The surgeon I chose has a great reputation for success with lumpectomies so I was confident and still am after 4 years that I made the right choice.  I split my docs between 2 Hospitals and have an easy time with a second opinion.

I remember reading on a dif board of a woman in Alaska who had to go very far for the only cancer center in Alaska.  Not as easy to get a good surgeon in Alaska I would guess.  I would think she might have had no choice but to do a mastectomy.  Glad with all of this that I live in the middle of so many good shops and docs. 

Infobabe

proudtospin

Exactly what treatment did you have? Mastectomy? Rads? 

CLC

Terri, when I suggested asking about the possibility of postponing rads, I did not mean to suggest it was a likely option.  As I said before, I know little about the procedures for rads.  I opted for a mastectomy because I was opposed to rads for me personally.  Please don't make plans without talking to your doctors and finding out their recommendations.  I raised the possibility of postponing rads so you could ask about it, not because I thought it was a definite option. 

It is a really good thing you are seeing the ro and mo soon...it seems to me that you need some definite answers so your mind will stop reeling.  Hang in there!

Cowgirl13

Terri, there is also EXTERNAL radiation--its 5 days, twice a day.  and it is not internal which can have complications.  I was considering it strongly, but since I am HER2+ I decided not to do it.  Its called partial external beam radiation.

proudtospin

Infobabe, I lumpies and traditional rads, I saw 2 radiologists and 2 oncologists at two dif hospitals before making my choice, I also relied on a doctor husband of one of my pals who was very helpful in explaining the thought process of the docs, not sure if that makes sense but when I said why are they doing test....he explained in a way that reasurred...course he was the former medical examiner of Staten Island!

anyway, not all docs or hospitals are the same.  Last year a gym pal of mine was told to get a BS and went looking for one in the yellow pages as she did not have my number...fortunately she did end up with one of the good ones and all was fine for her

your location can affect your treatment, no doubt in my mine

proudtospin

Infobabe, also, I take aromasin, my doctors strongly believe that the side effects of the ALs are less than that of tamoxifin and do not give it to women who are in menopause for that reason, you may want to research that for your self

Shayne

Im on Aromasin, and post menopause.......and know several other women on it post-meno as well.  Over a month now, no SEs.

proudtospin

Shayne, sometimes my aches and pains...not sure if from med or old age!  I do believe strongly in my gym......and the lovely pool!  I even dragged Grannydukes (another poster) to the pool last month as her PT had recommended swimming for her lymphodemia, if you are in my neck of the woods, drop in and come to the gym with me on a guest pass!  We got a bunch of survivors there!  we are all just aworking to keep everything moving~~

Shayne

Wish we had a decent pool where I live - cant handle the indoor pool at the Y - full of chlorine!

I had a few aches and pains before AIs......and exercise with weights/aerobics, hike, cycle......now finding that after i exercise, Im really wiped out.  It used to give me energy.  Might be a SE......not sure.  Im in AZ, so it is pretty hot right now and have been attributing it to that.....But its not slowing me down.  As a massage therapist, I know that once you stop moving, its hard to start up again.  And only increases joint pain/issues.  So I just keep going....... Remember, even if you only do 30min/day, its enough to get some benefit!   

proudtospin

Shayne, I do agree, I am afraid to stop swimming! 

I did not know you were a massage therapist!  I actually was looking into becoming a massage therapist for lymphodemia folks as they are in short supply in NJ.  Thought it might be something for me after my retirement from the advertising rat race! And looking for a new career but I am not a medical professional so it is my understanding I would need to do the full massage training first and then the lymphodemia training.  And I am concerned the aches in my hands would not tolerate the rigors of the massage training.  Any thoughts?  Lymphodemia massage is more gentle on the hands but traditional massage would be tougher.

Shayne

Yes, it is hard on your hands.....you can learn to use forearms tho, and yes, specializing in a certain modality such as lymphedema would be wise.