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snowgirlc53

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Reply with quote  #21 
Hi Raine and everyone else.  This site is a tremendous source of information as well as probably doling out more (((hugs))) than any I've ever seen!  As others have said, take all the info, ask the questions and make the decision that feels right for you.

I just got my path reports from my re-excision after my lumpectomy and feel like I've been hit by a 2x4.  The new report shows 'scattered' foci of DCIS and now my wonderful surgeon is suggesting a mast.  We discussed this at the time of my IDC diagnosis but he recommended against itat that time - results of the lumpectomy and SNB were 1.4cm/Stage 1/Gr3/Negnodes.  Onc appt Jul 28 and Chemo is scheduled to start soon after that.  I have been mentally preparing myself for that = physically I've recovered amazingly well after the 2 surgeries. I was at work the day after #2 with only discomfort.  However, mentally now having to make the decision to do the mast now or later or just monitor it is more than my poor brain can handle at the moment.  The mast decision is not a 'life or death' one according to the Dr but something I can do next year - at least after chemo is done.  One good thing...mast = no rad!  Add one, take away one.  I think all my research will now be based on recon available.
My whole focus now is getting through the chemo.  Anyone else done FEC and Doxytaxel?  FEC for 1st 3 treatments then Dxt for the final 3.  Scares me silly being sick for 4 months.

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Catherine
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zschweeb

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Reply with quote  #22 
it sounds to me that even after your path report there are still so many questions left unanswered for you...i also had to have a reexcision but got the all clear from my path report however a ct scan given at the time has given reason to believe a possibility of lung mets...i have to have another ct scan in augist to hopefully rule it OUT...waiting is the hardest part ...think hard and talk to as many people as you can before making your decision on what you plan to do the women here have helped me tremendously



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Susan
snowgirlc53

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Reply with quote  #23 

Thanks zschweeb, you're right about more questions.  Sorry to hear that you have to play the waiting game again.  Hopes that all turns out well.  I'm lucky that all my other tests - CT's, MRIs, ultrasounds etc. have all come back fine.  I know I have it much easier than many and it makes it difficult to feel bad and grumble knowing there are others with much more to worry about than me. 


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Catherine
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snowgirlc53

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Reply with quote  #24 

Holy moley, sorry Susan.  I'm so befuddled at the moment I didn't even address it to your real name!


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Catherine
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Reply with quote  #25 
Catherine, boy you did get hit with a surprise didn't you?
The best thing to do is divide and conquer.
Take care of the IDC now with the FEC which is a great chemo. I am not familiar with its particular side effects, but I have had lots of other ones and basically, if you follow the rule of taking all your meds whether you feel ok or not, stay hydrated and never let your stomach get empty, you should do ok.

When all is said and done then you can decide on the mast.

One suggestion I have is, if you are going to have a mast get both done. Have one prophylactic mast with the other one. This will ensure a more even outcome for the recon. It also will put your mind at ease that nothing is brewing in the other breast.

Hugs to you,
g


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Reply with quote  #26 
Susan they have been following a lung nodule on me for years.
They are most often benign, but since "we have a history of cancer...." they have to be  extra thorough.

Hugs,
g


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snowgirlc53

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Reply with quote  #27 

Thanks Gina, lots more research and time to discuss this with a couple of other specialists before I move forward.  One step at a time....


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Catherine
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zschweeb

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Reply with quote  #28 
gina--how do they know wether it is just a nodule io that it is a tumor are there biopsies doneor do they just watch and wonder??


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Susan
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Reply with quote  #29 
Mine is tiny and they follow it. If it doesn't change in size over the course of time then they can tell.
One thing they have told me was most people have a long nodule or two... they just don't get scanned like we do!
They watch it by scanning the chest. No biopsies or anything else.


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zschweeb

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Reply with quote  #30 

the problem with mine is that it has changed ...there was a ct done both before and after my chemo...before the 2nd ct scan both the onc and the surgeon had stated as long as there is no change we have nothing to worry about it would most likely be scar tissue from a previous bad cold or bronchitis if their is a change then we will have to see what it is...the one after my chemo showed change the path report stated "previously noted subcentimeter pulmonary nodules have improved, some of which are no longer visualized"  after reading this my onc said she was "very concerned" she scheduled another full ct with contrast for 3 mths which is scheduled for 8/19...with a follow up on 8/22 now its just a waiting game


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Susan
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Reply with quote  #31 
Susan,
If it was from an infection and it cleared, wouldn't the scarring improve?
I have had things disappear in my lungs. After my first radiation I had a lot of scar tissue in my lungs. They called it "ground glass opacity" A couple of years later it was gone.
I hope this all is ok for you!!!
Love,
g


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zschweeb

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Reply with quote  #32 

well you have  given much psitive feedback....just have to wait and be sure...thanx for all the advice..hope you are feeling well


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Susan
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Reply with quote  #33 
Catherine, and Susan, and anybody else this applies to.  A surgeon is not an oncologist.  And a general oncologist is not a breast specialist.  You need to get a second opinion before you make any decisions.  I recommend (naturally!!! ) Cancer Treatment Centers of America.  For the first visit, unless you're on Medicare, they will PAY for you and your caregiver to come there (plane, train, bus, car).  Thereafter, they will pay for YOU to go there.  This is the most kind, caring, wonderful group of folks in the world.  All tests are done in house and the results are back the next day.  There are four of them (Seattle, Zion, IL, Kansas City and Philiadelphia) and one of the four will take your insurance.  They will work with your local doctor if you don't have active cancer right now.  I can't think of a better place to be if you have to fight this monster.  In fact, one of their advertising slogans is, "If you're looking for a fight, this is the right place."  They never mention prognosis.  You have no expiration date.  If you're interested, let me know and I'll give you the contact number.


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Naniam

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Reply with quote  #34 
Catherine,

I had a Stage II, Grade II, 3.5 cm. IDC node negative BC.  I had to have re-excision of margins about 4 days after the initial lumpectomy.  After the 2nd one the doctor told me he felt sure he got it all.  Go back for follow up and
once again told he did not get all margins clean.  I thought I was faced with
mastectomy also.  I met with oncologist and with radiation oncologst.  They both felt that I would be OK as the radiation would take care of any remaining cells and of course I had the chemotherapy.  

I'm not sure by your post how the radiation oncologist felt about your margins and if the radiation after chemo would be sufficient.  I can only share that sometimes I wish I had had the mastectomy .  I know that yours is a Grade III so I am sure that plays a role also. 

Good luck in your treatment and decision.  Hope you check in during this journey.

Brenda


snowgirlc53

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Reply with quote  #35 

Thanks ladies.  Met the Onc yesterday and expressed my non scientific thoughts that, with all the advanced wonderful treatments out there, mastectomy for DCIS seemed kind of  medieval and barbaric.  However, I am not the type to continue to wait, and wait, and wait for something to potentially develop so I'll probably opt for the mast.  She did say that thinking about doing the other girl 'just in case' was very extreme.  I've got time during my next months of chemo to research and certainly speak to as many Dr's and nurses as I can before Imake the decision.  Luckily I'm close to Princess Margaret and Sunnybrooke that both have excellent bc reputations.


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Catherine
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Reply with quote  #36 
I am glad you have the time to make the best decision for you.
The only thing I can add is that you get more of a "matched set" if you do them both... and then you don't ever have to worry again.

But you take your time and deal with what you have to do now and then deal with that decision later!


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