I need some opinions....

NHsmiles

I have had rare and serious complications from every treatment thus far.....

A/C--Doctor wanted me to have transfusions due to very low blood counts.  I refused.  Something within me told me not to do it. I mean this woman pushed and pushed for the transfusions. Retinal Hemorrhages from the anemia.

T/H--Taxol caused critical Pnuemonitis.... Herceptin--Cardiomyopathy and Heart failure...both have reversed itself and I restarted Herceptin and my heart is closely monitored.

 Tamoxifen--Thrombophlebitis in my arm....the depression, mood swings and weepiness too. 

Saw my MO today...she mentioned having my ovaries removed and taking a different drug once they are removed.  I told her that at this point I feel I will not be so lucky one of these times with these drugs and I will die from the complications....she says she is concerned for that too, but she still pushes the drugs on me.  Mind you I am only 10% positive for Estrogen.  I said to her there will still be Estrogen in my body from other areas so why go to the great lengths of another surgery and more drugs risking additional complications?

I spend more time recovering from complications then receiving treatment. I feel like I am not being heard.  I feel my gut is telling me if I keep taking these dugs that I will die from a complication and not the cancer itself. 

Would you gals keep trying drugs when you history has been that your body is not tolerating the treatment?  I am cancer free on year now. Some of the complications have been so painful...and others took weeks and weeks to go away.  I feel like I just can't take it anymore.

Heather 

peggy_j

Heather, I'm so sorry you're going through this. Have you considered a second opinion?  Like you, I'm surprised by  all effort to remove estrogen when the tumor is only 10% ER+, but maybe they want to do all that they can. While most surgery is successful, there is always a risk and it's not reversible. The blood clot on tamoxifen is nothing to fool around with. BTW, my understanding is that some MOs give a shot to shut down the ovaries so you can take an AI. I'm not HER2+ so I'm not sure if there are issues taking certain drugs when you're on that. If it was me, I'd get seek a second (or even third) MO's opinion. Good luck and hang in there. You'll get through this.

rjbaby69

I'm with Peggy-j.  I think I'd look into a second and even a third opinion.  I don't like what those drugs are doing and it makes me scared for you.

I am sending best wishes your way.   You will be in my thoughts.

HUGS.

Joan811

Heather, my heart truly goes out to you.  It is difficult because as the body says "no more"  the mind deals with the fears of the unknown.
Seeing another oncologist could help -- not sure if you can get insurance coverage, but usually it is available for 2nd opinion.  Have you been to a large medical center such as Mass General in Boston? 
Hugs, prayers and peace to you.
Joan

NHsmiles

Thank you so much for responding ladies, your opinions mean a lot to me as you know what it is todeal with the whole cancer world. 

When I was first diagnosed, I blatantly refused the thought of chemo in general.  I was not going to do chemo unless there was node involvement.  Something told me poisoning my body would not be a good idea. 

I was being pushed to do radiation also, however I chose not to as I am in the grey area and I am worried regarding lung and heart damage since my tumor was on the left side.  My breast surgeon told me I did not need radiation as she made sure I had clean margins while she was in there.

I will do what it takes to stay on Herceptin as I am Her2+, my gut seems to be fine with that.  However, having my ovaries removed and additional drugs to treat ER+ by 10% does not sit well with me.   My body will never be at 0% estrogen as there are other sources of estrogen production. So, I truly do not see the point.

My oncologist was pushing me to continue with a different chemo after my critical pnuemonitis,and I refused. I needed an additional 8 or 9 treatments, and my gut told me no way.

Noone seems to realize how scared I am at this point from enduring such complications.  I also feel like a lab rat when my MO pushes treatments on me.

Of course there is a chnace of lingering little cells in my body, BUT what if there isn't?  What if my aggressive approach to surgery removed it all?  

Right now I am in so much pain from the Thrombophlebitis....I have been dealing with this for 6 weeks now.  My PCP and Breast Surgeon diagnosed Thrombophlebitis....my Oncologist diagnosed Cellulitis.  My Oncologists office even was challenging me regarding the Thrombophlebitis diagnosis. Which pissed me off as TWO doctors had the same dx.

Emotionally, I justcan't take it anymore.

Heather 

VictoriaB

Heather,

I hear  ya sister. We are all poked and prodded, pulled and pushed. I find that sometimes I just need to take a break from the cancer, and indulge myself, in chocolate, a hot bath, whatever floats your boat to make you feel better. 

Get a second opinion. Even a third opinon. You are listening to your body, right, so only work with doctors who LISTEN TO YOU. Tell the doctors about your SEs, and see if they can prescribe some meds to help the SEs.  

NHsmiles

Thank you so much for your support ladies and your opinions.

I am pleased to say I have an appointment at Dana Farber in two weeks.

I am looking forward to learning about some of the programs they offer and hopfully finding a new MO. 

Heather 

Miles2Go

You are a resident expert on your mind, body, and spririt, the only one in the room, heck! in the world for that matter.  The 4 magic words are, "I'll think about it."  Reasonable words, no offending, nobody can argue with them.  After all, this is your life not the dress rehearsal.  If you want to be really polite, you can add..."and I'll get back to you next week (or whenever)."  Actually I routinely deliver the think about it line with an open ended get back to you.  Own your power, gather your courage, and make appropriate choices for yourself.  Everything is "for now" in life, you can change your mind any time.  Make choices, monitor and verify your choices, and adapt to information as you go.  My arms are around you with a hug.  You too have promises to keep and miles to go (Robert Frost poem). 

NHsmiles

Thank you for your support and words of wisdom Miles2go.

I was so much stronger before my DX....Treatment has beaten me down.  I spend more time recovering from complications then receiving the treatment itself.

I made an appointment at Dana Farber. I want to see what other facilities have to offer as I feel I am missing out on a lot of forms of support and such.

 Iknow I need help accepting the new me which is difficult for me. I miss living pain free and having lots of energy.  Everyone thinks I am back to normal since I look good, however I am not.

Heather 

Miles2Go

Heather, I'm proud of you.  Now you're getting the picture, your "normal" has changed (whereas your friends are back to their normal, when the surgery is over, many people think the diagnosis is over, forgetting about treatment),

CELEBRATE your new normal!  You are breathing, dear Heather. Everything is difficult at first.  We ALL need help; we get by with a little help from our friends (including me).  Enough cliches already  

When you feel absolutely yucky, call one of more friends and ask them to tell you 3 good things about yourself; I've found that coping skill helpful (and some call me back for the same reminders). 

A practical word.  "Cancer free" is a misnomer in my opinion.  DCIS rightt. breast 15 years ago. ILC left breast, entirely different cancer (cancer is an equal breast opportunity kocker, excuse the pun!) 1 month ago).  I prefer the word "remission."  

My pending ?/answer is an OxnotypeDX test result folg ILC Stage 1b w/1.1mm micrometastasis found in a sentinal lymph node, which will influence (not determine) my choice for chemo or not (selected surgery only 15 years ago and will again unless to OxnotypeDX test # is very high.

I too was born with a highly sensitive body; I am quite discrimiating about medical choices. I spoke with a REACH representative from Am CA Society today.  She suggested I make appropriate choices for me; after all, it's my body, mind, and life, just as yours is yours. 

Kindly post and let us know how you're getting along after your Dana Farber appointment.     Sometimes we just hold hands and jump into the abyss of the unknown.  We're here for you.  Miles2go

NHsmiles

So, I had my appointment with Dana Farber last week and I was quite pleased with the MO.  My new MO is sending me for genetic counselingto see if I am high risk for ovarian cancer and go from there.  If I am at high risk then i will have my ovaries removed.  I really like the MO.

My new MO informed me at the end of my appointment that she had gone to medical school with my PS. I spoke to my PS about the MO and he had nothing but good things to say about her. 

On another note, I can't seem to accept the new me.  I am not talking about the new physical me as I  love my reconstruction 100% and have no regrets. I am having a hard time dealing with the fatigue and the lack of pleasure in life.  I feel like my spirit is broken   I put on a happy face in public, yet in private I am blue.

ruthbru

Do you exercise? If you don't, you might want to take it up. As crazy as it sounds, it really helps with the fatigue and will also help you feel better both physically and mentally. Keep busy, and be good to yourself. Update your wardrobe, go out for coffee and lunch with friends, do fun things, make fun plans. It is easier to put the bad stuff in the background if you are occupied with good things. Take Care! Ruth