Feeling guilty for taking a break

suejenn

Why can't you wait until the cancer shows signs of returning to start on inhibitors? The only answer the oncs will give me is that the trick is to keep the cancer from starting. But if my tumors were so sensitive to estrogen why suffer the side effects until there is a need? I was first diagnosed in1998 at age 48. Had mastectomy and chemo. 5 years tamoxifen and 3 femara. In 2009 , had a local recurrence. A small hot spot showed on the pet scan also on a lymph node in the opposite side but a needle biopsy came back negative. More surgery on the mastectomy side plus had the other breast removed and some of the skin tissue was used to cover bone so I could have radiation. Went on femara. 2012 my tumor markers which weren't normally checked were up but onl to a score of 53. Turned out there was a small malignant tumor at the place the hot spot noted previously. So had that out and did radiation and chemo. Went on aromasin. Had to take neurontin at night to help with the incredibly severe insomnia. And over the counter pain meds for joint and bone pain. The pills make me feel bad And I so dislike being dependent on a pill. At Christmas I broke a a toe. I think I compensated for walking and pulled something in my back and hip. So in March I stopped the aromasin and everything I was taking to deal with the side effects. Hip pain.was bad and I didn't need the extra pain from the aromasin. Starting to feel a little better and can even sleep a few hours a night though fitfully. Feeling guilty about not taking the aromasin. Will start back increasing by quarter doses and see if that will enable me to take the meds but still get natural sleep. I figure if the cancer started growing again going back on the meds will stop it. Does anyone quit from time to time and do you feel guilty when you do? I would feel so bad if I put my family through another bout because I took a break from side effects. I miss feeling fresh and normal. Thanks. I will see my onc again in July but I don't think she takes my concerns seriously.

Jennie93

Hi suejenn, I don't think you should worry about taking a break. I've seen many women here mention taking short "vacations" from these meds with their Drs ok. When my dr switched me from tamoxifen to anastrazole, she said it was perfectly fine to take 3 weeks off in between. It really does stay in your system for a long time.

arbojenn

Thank you, Jennie93!

CidneyI

I have been on Tamoxifen since Nov 2014 and thinking of taking a short vaction from it - like a month if that long. My question is to those who have done this, can you tell the differnce right away? Also, anything to consider when I start taking Tamo again? Will my hot flashes come back worse or will I gain even MORE weight? Will I have worse brain fog, etc.....

Lily55

I am taking my second break from Aromatase Inhibitors, I was told by a very well respected Oncologist that there is some evidence that taking a break can be helpful. My experience is that it takes 4 weeks off to really start to feel better but I am sleeping better already after one week off Aromasin...........He also emphasized it is vital to wait at least 6 to 8 weeks before changing from one medicine to the other.......

THe only thing is that I think you are better off taking nothing than taking a quarter dose as you could be helping cancer cells to find a way around the oestrogen blocking effect of Aromasin by taking such a low dose.....with cancer that is very hormone sensitive they need the hormone to spread but it takes the hormones a while to get up to full speed again. I would enjoy your break but either take it or don´t....................

TarheelMichelle

I felt terribly guilty taking a break, then ultimately stopping, Aromasin. The estrogen in my body was suddenly and completely wiped out by the drug. The pain in my joints was awful, and this was on top of the pain in my bones from the mets. Exercise was impossible. I didn't tell anyone at first. Because the results from Aromasin were fantastic. Finally confessed to my oncologist. She switched me to another medicine. I know I can go back to Aromasin but so far I have not needed to.

What breaks my heart the worst is reading that you think your oncologist doesn't listen to your concerns. Please find another oncologist. You deserve that.

Lily55

Whats the name of the other medicine you are taking please Michelle?

Tomboy

Plus, Michelle (such a pretty name! it's my middle name) it says targeted therapy in november of 2015. I did take a break from valentines day till cinco de mayo, from femara. And then restarted with tamoxifen. And I really need to find a new onc and np, etc, a different treatment center all together, because mine seems exquisitely gentle, compared to suejenns', and how my present ones act with me. They treat me as if something is wrong with me, because I find it almost impossible to live with the undesirable effects of these drugs, like no other women they treat are having this problem. They are really not very nice to me at all, you wouldn't believe some of the stories i could tell. I hope if they get cancer, they get treated like they treated me, because it was already difficult enough with out their attittude of condescension, almost like they were mocking me... I know that I have been complaining of my doctors for a long time, but the effort I need to expend to find new ones seems insurmountably difficult,as I had no energy whatsoever, until just recently. But a longish day can still wipe me out..

Because when I went back to see if I could try aromasin next, (no) they both acted like they didn't know I had stopped femara, even though i did it with their permission. Sometimes I want to quit, and just go ahead and die.

Tomboy

Oh, yeah, also: if doctors are telling other women that no other women they know are having problems with these treatments, does that mean that they are not reporting them to the drug companies? Like all the problems are severely under reported?

Jennie93

I am quite certain they don't report any SEs ever! My MO is the same way -- has perfected the blank stare and the "gee, I never heard that before" attitude. Baloney!!! :-(

Pokemom1959

I'm on the guilt train too - I told myself I was going to stop taking Tamoxifen for a month to see if I feel better. Instead I broke the pill in half and take half in the morning and half at night. Each time I take it, I seriously stare at the pill for about 30 second with a debate raging in my head - to take or not to take. I end up taking it because I'm terrified that the cancer will return if I don't and I would feel very guilty if I put mmy family through that again

Professor50

Lily55, I was wondering if you have any information that might flesh out that idea that taking a lower dose might be bad because it might allow the cancer to "find a way around" the aromasin. This sounds more like the way people talk about antibiotics. Is there some information somewhere about the dosage recommendations and where they came from and (again) if there is some reason that a lower dose is not only less effective but actually harmful? I'd love to learn more about this.