Need Opinions and Advice

LadyGrey57

Hello All...I need your heartfelt thoughts and honest opinions.  In October 2009 I was diagonsed with DCIS grade 3.  Went through lumpectomy and 30+ rounds of radiation, and I am now on tamoxifen with no side effects.  However, every follow up mamo..the drs. find microcalifcations, and in April I went through another biopsy.  My local hospital was uncomfortable with reading the results...and it was sent to John Hopkins (I think) for more "review".  Luckily, it was just microcalifications.  But, in those three weeks I thought I would going to loose my mind, it was horrible waiting and waiting.  So, my Radiation Oncologist suggested that I might be well served to have a bilateral mastecomy.  My Oncolgist and family doctor support this decision.  I was scheduled for July 18 but I had an abnormal EKG, so the surgery was delayed until Monday August 8th.  However, I am now having second thoughts that this might be "overkill" but I am just terrified to go through another mamo.  In addition, I leave for vacation on October 21, 2011 and it most important that I be healed and ready to travel internationall by that date.  I would appreciate all your opinions and suggestions.  Thanks for listening...Carol

chrissyb

Hi LadyGrey the only questions I would ask myself in your position is what is going to give me the best peace of mind and how would I feel either not having any breasts or reconstructed breasts.  If it were me, I would have the mastectomy for full peace of mind.

Love n hugs.  Chrissy

lisa-e

I would not have a mastectomy for the reasons you state.  It is one thing to have one because of a medical need, another thing  for peace of mind.  I had no other surgical option, but after three years, I still miss my breasts.  I have a fair amount of tightness and discomfort three years after the surgery - it is not a minor thing.  

dlb823

You'll no doubt get a wide range of input, and in the end only you will know what's best for you.  I see that you're less than 2 years from your dx, and, personally, I know my fear of a possible recurrence or contralateral bc was pretty high for probably a year or more after tx ended, but has lessened a lot in the past year.  Not that those can't happen to any of us, but if I was in your position, knowing what I do now about the fear hopefully ebbing as you go forward, I would wait and see how you feel in a few months.  And while I am well aware that diet modifications, exercise, supplements, stress reduction and other natural things we can do won't absolutely ensure a bc-free future, many of those things have a scientific base, so might give you added peace of mind if you were to incorporate them (if you're not already).

You can always go for the BMX if the fear continues, but you can't undo it once it's done.  And unless you're a complete emotional wreck worrying about it, if you wait and decide to do it in the future (since it's not an urgency), perhaps in that time there will be some newer reconstruction advances. 

Just my thoughts on it.   Deanna 

Barbie7

LadyGrey,

I'm sorry that you are experiencing such fear.  I too struggle with anxiety around cancer tests and the possibility of recurrence.  The thing that struck me in your message was your desire to get this done and be recovered in time for some overseas travel.  Is it possible to schedule the surgery for after your return?  This would give you more time to explore your thoughts?  It seems that unless a mammogram is in the near future, waiting until you return could be one way to make sure that you've given this thoughtful consideration.  I have not had an MX, I've had a partial MX, so I cannot answer any of your questions regarding that surgery.  I do worry that you are rushing the decision based on travel plans.  

Best,

Barbie

DeeLJ

I had DCIS and after reveiwing all my tx options (do nothing, radiation, radiation w tamox, unilateral mast, bilateral mast) I opted for the bilateral mastectomy. For ME this made sense. It took me MUCH soul searching to come to the decision and I flip-flopped a lot while I was deciding.

The surgery is not to be taken lightly, it is anesthesia, it is pain, its at least a day or more in the hospital and a significant recovery period. I am two weeks out as of today, and I just got the last drain removed. I feel like my chest is wrapped in a tight band. 

You have to be prepared psychologically for what it looks like. You have to decide if you are ready to commit to reconstruction with fills etc. or if you are ready to live your life with no breasts. These are not decisions to make lightly or under duress. They are intensely personal decisions.

There are a lot of factors that come into play making this decision. NO ONE can tell you what to do. I sure wished someone would tell me what to do, but after I came to my decision and the resultant peace of mind, I realized that if anyone had told me what to do, I probably wouldn't have listened anyway because it is such an intensely personal decision.

The only advice I would give would be to look into the option of having your surgery postponed until after your trip. It is very possible that you are feeling the crunch to get the surgery done before you travel and that is somehow contributing to your confusion/indecision. This is a huge decision and one that should never be made in haste if at all possible. Now obviously if you need to have the surgery right away then by all means have it! But if you are given the clearance by your doc to take extra time to decide, then that may be something you want to consider doing.

Ultimately, this will be your choice. I saw a rad-onc, a medical-onc, my breast surgeon, and a plastic surgeon and asked all of them to tell me what they could do for me, how they would treat me. It gave me the chance to see all options, from all angles. What each one said to me is that no matter what treatment option I chose, it would be the right one for me. 

They were right.