I don’t think I want to fight

PMML

I’ve had surgery, I’m on tamoxifen and I’m waiting to start radiation. But more and more, I feel like I really don’t want to fight. I’m not saying I want to die of breast cancer, but I’ve spent my life fighting for one thing or another and my life just isn’t that damned amazing. The idea of a “new normal” sickens me as my old normal has been fairly shit for quite some time.Yeah I have family and friends that would be affected if I chose not to have treatment but their lives will go on either way. Is this a “normal” phase? Once the world settles down a bit, I’ll go back to my psychologist to talk through this but I am struggling with this every day at the moment.

Beesie

There is nothing wrong with questioning your treatments and wondering if they are worth it to you. Maybe they are, maybe they are not. Your decisions on treatment need to be made in the context of your risk, with consideration to the benefit of these treatments in reducing your risk. Choosing to pass on either rads and/or Tamoxifen might put you at significant risk or it might only increase your risk by a small percentage. Maybe you can live comfortably with this increased risk, or maybe you can't.

Did you get an Oncotype score that provides an estimate of your risk to develop metastatic breast cancer? If not, did your MO provide you with an estimate of this? Tamoxifen will reduce this risk by approx. 30%, which could be significant if your risk of mets is high, but might be quite low if your risk of mets is low.

Do you have your pathology report? The description of the tumor (size, focality) and the size of the surgical margins helps provide an estimate of your risk of a localized recurrence. Radiation is standard treatment after a lumpectomy and reduces local recurrence risk by approx. 50%. Here again, if your recurrence risk is relatively high, this can be very significant. But if your recurrence risk is low, the benefit will be low.

The question of whether you want to fight can't be answered without knowing what risk you are up against. So to me, it's not so much a question of "the fight" but a question of weighing the pros and cons to make the best decision for yourself.

dysonsphere

I would say so. We have similar diagnosis except my cancer had spread to a few lymph nodes. My oncologist started me with chemotherapy. I've had 6 rounds of chemo so far.10 more to go. Let me tell you, there have been many a day I was curled up and telling God and anyone that would listen that I CANNOT DO THIS! Luckily, I haven't had long periods of suffering in my life. So being on month 3 of constant suffering is surreal. However, recently I made a decision that there is going to be a purpose for this suffering. Yes, my life will not be the same. It will be better. I can appreciate life more. I can use this suffering to build a relationship with God, to build better relationships with my friends and family. It's difficult to choose to be positive but I hope you can make that choice for yourself. Hugs!

Bounce

Dear PMML

I'd like to say how sorry I am that you are going through these hard times.

We have a similar diagnosis - you do not mention chemotherapy - perhaps - like me you do not need to do chemo?

I had a thought I wanted to share with you. It is hard to find language to describe how we go through cancer and treatment. For some it is a burden to bear. For some it is a journey. For some it is a fight or a battle.

These are often expressions that other people use and put into our heads. I know when I was diagnosed some stupid family members told me I had a good attitude and they were sure I would "beat" cancer. I didn't really know how to react and thanked them for the compliment. Today I would tell them to bugger off. :-)

I had a lumpectomy followed by radiation with a month's break and then started Tamoxifen.

I don't think of my experience with cancer so far as a fight. I didn't feel sick from the cancer and I didn't do chemo. The lumpectomy was not terrible. Radiation made me so tired I really couldn't cope with life for about 2 weeks - I was able to take those 2 weeks as unpaid leave and then returned to work. I started out terrified of Radiation but MrsPharoah told me to think of it as healing energy not the enemy and that is what I did.

Tamoxifen messed me up for the first 6 months. Eventually I just got tired of worrying about the side effects and stopped thinking about it all the time and got on with life as best as I could without judging myself all the time.

I learned to breathe through hot flashes and not fight them. (Note the language.)

I stopped lying awake at night worrying about the future so I slept a bit better.

I stopped worrying about my decreased cognitive abilities because I decided that I would do 5 years of Tamoxifen come hell or high water given my family history with cancer.

After that I feel as though I stopped FIGHTING and just let things happen.

I did not accept things I didn't like like a sheep - I changed oncologists twice because the first 2 were not very caring human beings.

When you are at the beginning of the cancer experience it is very hard to imaging that in 5 years time you might very well be just getting on with life as you were before without much having changed.

I am still the same anti-social, boring, introvert I was before I got cancer. I didn't have an earth shattering epiphany about how my life should be - I didn't change jobs for some fantastic position - I didn't write a blog.

I don't think that I fought cancer.

I don't think that I went on a journey.

I don't think God tested me.

I had cancer. That's it.

You have already done 2 thirds of your treatment. You have even started the last third (Tamoxifen). You don't have to do any fighting. You just have to carry on putting one foot in front of the other.

Tamoxifen did mess with my cognitive ability and my emotions. It is hard to describe how I felt - sort of adrift. After my five years were up and I stopped taking it I felt physically better but missed the reassurance of doing something positive to not get cancer again.

The only thing I have learned is that I can't control much and I don't have to have all the answers in advance. I can deal with stuff as it happens and as best as I can at the time. Much less struggling. Much less fighting.

Let us know how you are doing - reach out for support when you need it.

Best wishes

Bounce (because I hit bottom sometimes and go splat but then I bounce back)

Ingerp

More random thoughts. When I heard that rads would cut my recurrence risk in half, it was a no-brainer. It's likely you'll get the shortened protocol, maybe something like 20 sessions, over four weeks. It's not a fun schedule but it really does go by quickly. Check and done. I get that something like Tamoxifen/an AI is difficult. Even if you don't have much in the way of SEs, I've occasionally gotten really pissed that this cancer journey isn't just the surgery, the chemo, the rads, . . . , but it's going to be fairly prominent in my head for 5-7-10 years. That's a *lot* of your life to give over to something. But still. . . For now, I'm sticking with it because I am one of those people who would be pretty annoyed with myself if it does come back and I didn't try to do what I could. I'm about 1.5 years into the AI and have told myself that after five years, even if it's recommended I stay on it for longer, I'm going to give myself a nice long break. That's something to look forward to that doesn't make it feel quite so interminable.

Take your time. Talk with your psychologist. Can you put the Tamoxifen on hold until after rads? I didn't start the AI until like a month after they were finished. It was a nice break. Maybe that would let your head clear a bit and deal with one thing at a time.

Beaverntx

PMML, could you at least have a telephone conversation with your psychologist? That could be very helpful now, rather than waiting until things open up again sometime in the future. Please at least try to reach your psychologist. (((( Hugs ))))