HELP-Please Share Advice

Sunny1012

Hello All,

I am in desperate need of some support.  I have been a mess.  I was diagnosed 10/28/13 with ILC about 1.2 cm after a mammogram, ultrasound and core needle biopsy all on the same day and went for several opinions ending up with a surgeon I felt comfortable with. I had a lumpectomy and sentinel node removal on January 8th.  The nodes came back clear.  The margins are clear on most sides but one side could not be definitively cleared as to whether it had ILC, LCIS or nothing. The reason it took until January was getting second and even third opinions but in my head that's what I had to do.   I love my surgeon and felt such a relief after surgery after being so scared.  Now I am a mess again as I face radiation and hormonal therapy.   I have researched radiation and tamoxifen and when you really dig in, its not good.  I have had 3 radiation consultation visits and my fears have not been quelched.  In fact, every question I asked really ended up with, this is what we know to help but yes all the things I asked can happen and some up front and some years down the road.  The Tamoxifen has issues as well and as I dig in I don't feel like we are told the whole story of the consequences these treatments have unless you ask specifically as I have.   I am so afraid of what will happen if I don't do the treatments as well as what will happen if I do.  I know I shouldn't get stressed but I have felt so alone and overwhelmed. I am very thorough in researching and asking the doctors everything--nothing is left unsaid and I have had more than one doctor tell me we can not guarantee you anything one way or the other.  You could live out your life with no more recurrence but then again you can have one with or without treatment.  So, I am wondering what advice you all have and how you came to terms with decisions about your life and treatment. 

ziggypop

Hi Sunny, 

Terribly sorry that you are going through this. It's certainly difficult to deliberately do something that you know can have bad effects on your body. Nobody can decide what to do for you. I would be careful about thinking that the things that CAN happen are LIKELY to happen. As far as radiation is concerned, you need to think about what the doc's say your chance of recurrence is with and without RADS. You have to remember that if the cancer does come back it can do so in a more aggressive form. Then you have to think about the side effects from RADS (I had 30 treatments last year & so far other than some burned feeling skin for about 2 weeks, I haven't had any ill effects). You need to think about how you're (you, not anybody else) are going to feel if the cancer does come back and you didn't do the RADS). 

As far as Tamoxifen is concerned, you have more choice, because you can always start to take it and see how the SEs are for you. Keep asking, and get a lot of different perspectives (remember that the women here are more likely to have had bad experiences - generally what gets people here and/or part of what makes them stay). In other words, the women who have a lumpectomy, do RADS, and take Tam. and haven't had bad experiences are more likely to go on and live their lives without coming back here as often.  

Sunny1012

Thank you for responding Ziggypop!  I guess I am just so damned scared of what all this can do to me. I also don't want to die of cancer either so it all scares me.  I had a bad experience with the medical community once when I had a bad reaction to an antibiotic and then a systemic reaction and nobody knew why I wasn't getting better.  I'm afraid that if I say ok zap me with radiation and then I get sick they will not know what to do and say well sorry that's what comes with the treatment.  It took me two years to get through whatever happened with that antibiotic--- on my own after being sent to several doctors who literally said they didn't know what was wrong.  Now we are talking about maximum dose radiation---it doesn't make sense to lie there and do that every day for 6 weeks omg!  My alternative is to go back and have a mastectomy or do nothing.  Any way you go there is no promise of a good outcome.  This is why I struggle.  I am sure I will have to start radiation in a week or two but really wanting to run away to some quiet island .  Yuck!  Thanks for listening to my fears.  I can barely sleep and I work full time so not good.  Bless you and I wish you well !

Kicks

Only you can decide what you want to do/what you feel is right for you.  I can only speak for myself but I was ready to do everything offered to attack the beast.  I would not have been able to face my Hubby, Sons and G-daughter if I hadn't fought with everything available IF/WHEN it returned.  I was offered neoadjuvant chemo, mod. rad. mast., adjuvant chemo, rads and finally hormone therapy.  Was it fun? Not at all but for me anywy, the option of not doing everything was not good or what I could do.

I felt completely comfortable with all my Drs so I never wasted time (at least to me it would have been wasted but I do realize that it wouldn't be to some) with getting several opinions.  Being IBC, getting into neoadjuvant chemo rapidly was imparative so 17 days after DX I started A/C.  But then with other types, the TX plans are different.

Even if you decide to go back and have a mast. that does not guarantee that every possible cancer cell that was in the breast is removed.  It is impossible to get every cell of breast tissue out.  Is it likely thata cancer cell will be left if clean margins are gotten - no but it is possible.  Rads are a bit of 'insurance' that any stray cell left is zapped.  Of course there can be SEs but there can also be SE's with anythig we put in our body or do to it.  The vast majority have minimal SEs, especially compared to the benefits.  I am one who did burn very bad after my 25 rads but I'd do it again in a heart beat, even knowing how I reacted.  I firmly believe that rads (along with all other TXs) are part of why I'm 4 1/2 years since DX and still NED.

There are other estrogen blockers/AIs besides Tamoxifen.  I've been on Femara/letrozole for 4 years with no SEs.  We are each so unique.  If you're being told you need it then your cancer 'feeds' off of estrogen.  Even after menopause (natural or surgical), there is still estrogen produced in our bodies and in some foods.

Have you discussed your feelings with family/loved ones?  What you decide to do does effect them but the final decision is yours and  yours alone.

Certainly ask questions and 'research'  BUT be careful of some things found on "Dr Google" - there is a lot of very good info/sites there but there is also a lot of bogus/less than honest/true info sites there.

Just my thoughts/beliefs and how I choose to live/fight for life.