chemo yes or no how to decide?

lenaAZ

I've been recently diagnosed with breast cancer. I've been told: IDC, node positive, high risk. I've also been told that chemo is recommended. I am considering declining chemo "against medical advice." 

I value quality of life very highly. Exercise and a clear head are vital to me. I am not someone desperate to live absolutely as long as possible. I feel able to accept risk of an earlier death as part of a gamble on a higher quality of life for a shorter time. I am also aware that cancer may make me sick at some time in the future, whether I treat it or not.

Right now, I don't feel sick. In fact, I improved my exercise and diet after the diagnosis and feel physically very well. I am afraid that the first day of chemo will be the last day of any kind of life that I value -- in other words, I am afraid that in choosing chemo I would in effect be ending my life (that is, the life I value) earlier than necessary.

All of my research and conversatios with oncologists gives me information about survival, but not about surviving with a minimum quality of life. How do I make this decision?

Thank you.

 

 

lenaAZ

chemo yes or no how to decide?

To be clear, it is not side effects DURING chemo that I am most afraid of, but rather long-term side effects or permanent colateral damage like CVD or CRCI.

spicegrl

deciding about chemo

I have had BC 2 X w no recurrences 1 early stage node positive in  2010 & one early stage triple negative in 2014 , considered a " second primary" cancer .  when I was first diagnosed I was not only highly skeptical about chemo & radiation and also freaked out about permanent side effects. 

As is so often w BC many women reached out to me that had been  through the rabbit hole of mainstream treatments and came out with flying colors . But the woman who influenced me the most was a survivor who told me she too was skeptical of western medicine / big pharma and had declined chemo and gone with  alternative treatments/ supplements . She was super fit & disciplined , had clean healthy lifestyle & also very smart college professor who did her homework on alternative treatments .

However  she warned me that after all her best efforts she had a recurrence after all & maybe  I should think twice about not going the beaten path. Sadly She died last year after a very long & difficult battle w BC. 

I am grateful I went ahead and bit the bullet and did what my oncolgist recommended . I just tried not to think of it as " poison"  but rather as a "cellular sloughing"  like shedding your skin from the inside out and starting over.  I had 2 completeky different chemo cocktails for each cancer espisode . It  was berable and I was able to work, but got more icky and tedious  towards the end each time as it builds up in your system and to me the 6 weeks of  radiation to the area was a cakewalk in comparison . 

I haven't had any recurrences yet, and am well past the high risk years for both types of BC.  We don't know that traditional treatment would have worked on the professor but I think its possible that  she may have saved my life with her warning .

after 5 years I have had no drastic permanent effects from the treatments .  my hair is a little thinner , but more likely that's from menopause. ( I was in my early 50's & still having regular periods but chemo fast tracked  me through that ) 

Looking back that at time of going through treatments my memory is a fog.  I think that its possible the cellular sloughing from the  chemo also erased / softened my memory of it . 

 

Best of luck to you 

Phoebesnow

Treatment

Hi,  I’m so sorry...

 

Have you had the Oncotype DX test?  This test will determine him much of a benefit you will get from taking chemo and chance of reoccurrence.  I highly recommend it.

 

Breast cancer is a doable surgery, radiation , reconstruction is not as bad as you think.  i Haven’t had chemo  for this cancer (but did have chemo 10 years ago for a different cancer...not so bad considering I’m cured.  Where there side effects....yes there was.) my Onycotype DX score was a 9, which is pretty low.  You have cancer and you fight it and you’re grateful to take these drugs and treatments.  Yes...my life is no longer perfect...but I live every day enjoying the things that I love most.  I decided not to take the hormone treatment based on research that I did.  I’m a year and 1/2 out of treatment, recently had a pet scan all clear.  I chose a more radical surgery than what they recommended and in the end they said I made the right choice finding precancer cells in the other breast.  I also opted for instant reconstruction which they also didn’t recommend But it worked out really well even after radiation.  Once again I did a lot of research and consulted with my radiologist on what I could do to minimize damage.

 

Yes this journey is full of scary moments...but you have to take control and manage yourself like you are a business.  

 

You will get through this...I chose the quickest route and I’m happy.

 

Good luck!

Ubsaf2day

You're telling my story!

Hi Lena.

I am new to this site and yours was the first post I read.  It was like you were telling my story and thinking process!

I found a lump April 2020, had a mamogram which identified it but could not have a biopsy as all "elective surgeries" in the State of Ohio were put on hold due to Covid.  When the ban was lifted I had a biopsy and was diagnosed with IDC.  Met with a surgeon, had lumpectomy in July, then had bad margins so had a re-excision in August.  8 lymph nodes removed and no cancer detected in any of them.  Praise the Lord.

Met with Oncologist 9/11/20 and she suggested having the Mammoprint test done.  Results indicated "high risk" so she wanted me to begin chemotherapy the following week.  I attended the Chemo Training session and really did my research of the studies and expected outcomes.  By the time the chemo training was finished I decided it was not something I was willing to do.

I am a 63 year old Construction Safety Professional who wears steel toed boots for work.  I am planning to retire the day I can get Medicare.  I, like you, deciced I wanted quality of life; not necessarily longer life.  (Been divorced for 23 years, no plans to remarry).  I simply could not fit being sick and tired (no pun intended) into my lifestyle.

I love Jesus and know where I am going when I die.  I am not afraid to die - what I am afraid of is to not live WELL.  And that is something I do have a little control of so I got really serious about my diet and exercise and investing time, money and energy into loving God and loving others.

I did agree to receive radiation therapy (they came in at 7AM just for me so I could have treatment and then go to work) and I had 21 sessions.  I had serious skin toxicity problems and a massive hematoma that bled on its own twice and I had drained twice.  10 months later is is finally beginning to break up and not as painful when I roll over while sleeping, but I did the radiation as requested so check that box.

The Ongologist reccommended I take Letrizole for 5 years.  Again I researched the drug.  And again I was not willing to intentionally cause myself to go through menopause again, have hot flashes and night sweats again, give myself osteoprosis and headaches, and a common side-effect of weight-gain.

Lately multiple people have been telling me I should have done the chemo or at least taken the Letrizole.  But the studies I've been reading just aren't convincing me that the poor quality of life during and after the treatments are more valuable than the quality of life I am having now.  

I have lost numerous people over the years who had a life of hell during treatments; their families went through it with them, and in the end (mostly <5 years) lost the battle.  I've been called selfish and uncompassionate.  I say I'm being a realist by not expecting to live a looooonnnnggg life, especially if its a burden to me and my family.

If my situation changes, I'll re-evaluate it at that time.  

God Bless you and I pray you have support for your decisions and your health.

Kim