POLL: Quality of life

Cheesequake

For those who have been through any treatment (surgery, chemo, rads, hormone therapy, targeted therapy, recon, etc), a couple questions:

1. Would you do anything differently?

2. How different was your quality of life during treatment? (Better, the same, worse, much worse?)

Any stories or insight would be appreciated as well.

Thanks!!

Holeinone

Andi,

1. I would of gotten anti-anxiety & antidepressants from day 1, instead of waiting 6 months. Also, I wish I had insisted on starting chemo sooner. My MO would not start it until one month after lumpectomy.

2. My QOL during chemo was living hell. I describe my dose dense A/C treatments as legal torture. The dose dense Taxol was painful, but not as horrific.

My dx is stage 3 with extranodal extension. They were looking for mets, after my lumpectomy.

Would I do it again ? Yes, to save my life & get another 10-15 years.

ruthbru

I had a lumpectomy, 4 rounds of chemo, rads, and did 5 years of Arimidex.

* I am definitely glad I had a lumpectomy & rads....more so now then even at the time, I would have been kind of sad to be flat but don't think I could have done through all the extra surgery/time/money/hassle/potential problems from reconstruction.

* chemo was not fun, but not as horrible as I thought it would be either. I was able to work full time during it, do everything I had to do & most of the things I wanted to do too. I am glad I did it because I wanted to do everything I could to minimize ever having to deal with this (and worse) ever again. I am also I got a good wig before I lost my hair, it minimized the trauma for me that nobody knew I was in treatment unless I decided to tell them. Also, I did dose dense chemo every two weeks with Neulasta shots because I wanted to get it over with ASAP.

* I did not have any bad side effects from my anti-hormonal treatments & was very grateful that it was available.

Some things that helped:

* I told my friends and gladly accepted their help (and would tell them what I needed if they asked). I hired a cleaning lady, let unimportant things go, said no to things I didn't want to do, MADE myself go out to fun things (coffee with girl friends, concerts etc. even if I didn't geel like it).

* I didn't try to find any deep meaning in it all (until later) just concentrated on getting through one day at a time

* I did lots of research, but once I knew what I had to do to have the best chance of a good outcome, I shut down the computer and just did it.....I tried not to 'look for' terrible side effects, I figured it they were going to happen, they would find me

* I exercised as much as I could during treatments & I think that helped me come through it better and recover more quickly afterwards too.

Yes, I am glad that I did everything that I did, that I came through it in one piece both physically and emotionally; and I am as grateful as  can be for the last eight years......which have been absolutely great!!!!!

Kicks

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1. The only thing different I would do IF I had it to do again is to have started Domeboro soaks sooner for my burns. I did not burn during Rads but the day after last rad the burns showed up 'big time'. All sorts of things were tried to heal it but nothing worked until Domeboro soaks. It was over 3 mths of the entire irradiated area being 'open'.

2. My QOL was great during neoadjuvant A/C - did not slow me down at all. Adjuvant Taxol wasn't so good - I 'existed' the 12 weekly infusions basically either in bed or on the couch in front of the TV. I was fortunate as Hubby took over all house and cooking chores and dog and bunny care; Son took over all horse/barn chores - so I only did what I wanted/felt like doing without having to do anything unless I wanted to. A couple of days after 2nd A/C, I drove my first Powder Puff Mud Bog and did a lot better in my class than Son did in his.

Surgery - well that's a bit different than many have experienced. While I was on neoadjuvant A/C, Hubby 'Baby Girl' (his dog) died of cancer. He had been hunting all over the country for a new dog but had no luck finding one. The day before my UMX for some unknown reason, I stopped at the local Humane Society and there was what he was looking for. So the next day when I was in my room after UMX, I sent h and Son to see her. Well he got her but she had to stay til she was spayed. She came home the next afternoon so I had a new big. B&T Hound to deal with the day after UMX. It worked out fine - she and he overload his recliner every night.

Hormones are not given to BC survivors. Estrogen blockers are IF you are ER+. I have been on Femara/letrozole for 5 yrs and will be on it forever. No issues at all with it.

I had initially thought I'd do recon, but it was not an option at the time as none of my Drs would consider doing recon for at least a yr because of being IBC. When a yr came around, I decided there was no way I was going to do more surgery. When I told Hubby my decision, he said he was glad as he did not want me to do more surgery unless I felt I needed/wanted to.

I do deal with LE (LymphEdema). It does not slow me down at all either.

5 1/2 yrs post IBC DX, my QOL is fantastic.

ruthbru

Ah Kicks, she is your angel dog. We had a tiny stray kitten show up on our doorstep when I was going through treatment & she was such a happy distraction for us as well.

glennie19

I wish I had found this forum earlier!! It would have been really helpful if I had.  I would have found out that many surgeons leave excess skin after MX  just in case you want recon later,, and I would have known that,, and been prepared to insist on being completely flat.  And I would have possibly learned about LE risks and taken steps for that.  And I would have probably gotten a 2nd opinion on my BS.

SpecialK

I was offered a lumpectomy and brachytherapy radiation, but elected bi-lateral mastectomy because I didn't image well, and mammography did not see my palpable 2cm mass.  I did not feel I could rely on imaging going forward, and I had breast issues for at least 20 years prior to my diagnosis.  I had a pre-surgical MRI that did not see my positive nodes.  Post-op pathology revealed both ADH and ALH in the supposedly prophylactic breast.  No regrets about the surgery I chose.  My SNB was initially declared clear in the OR but had micromets so both my surgeon and oncologist pressed for ALND surgery.  Both are forward thinking and progressive docs, but they both felt that with Her2+ disease, the nodes had to come out.  I had a much larger positive node further up the chain.  I would much rather have the mild lymphedema I have, then rely on chemotherapy to have cleared that size node.  No regrets on removing the remainder of the nodes.  I had skin/nipple sparing surgery with immediate placement of expanders.  I was unlucky to be in the 20% that develop necrosis after this surgery.  I can say that waking up from surgery looking not that different from when I went in was good for my mindset.  I eventually required a succession of surgeries and the loss of the left expander so I could proceed to chemo/Herceptin.  No regrets on this choice.  I did six rounds of TCH - not fun, but I got through it mentally, emotionally and physically intact.  No regrets, I feel this systemic therapy saved my life - my cancer was clearly on the move. I am on hormonal therapy - with some med changes I have found a maker that works.  No regrets, I believe that hormonal therapy continues to keep me NED. I continue to have reconstruction issues, but in a way I view them separately from the cancer.  I would not do a thing differently.

debiann

I did lumpectomy first and had "close margins". Started chemo knowing that when it ended I would need either a second lump plus rads or mx and no rads. I was happy that during chemo I had time to research and figure out what I wanted. I choose double mx with diep recon and couldn't be happier with the results.

For me chemo was the hardest part of this journey. I was miserable for a couple months, but I'd do it again. The one thing I learned is how important hydration is and that sometimes no matter how much fluid you drink, you may still need intravenous fluids. It took a few rounds till we figured out this was my problem. Scheduling extra fluids made a big difference.

The other thing I learned was that second opinions can be useful if you're not comfortable with the recommendations. Before chemo, I consulted with a PS about recon options should I want an mx. He told me about TRAM flaps and implants. Neither option appealed to me, so I went with the lump.

During chemo, while researching other recon options, I learned of DIEP flaps. There was only one PS in my area who did this procedure and ironically he was in the same practice as the first surgeon I saw who only told me about the procedures HE could do, but not all my options. 

farmerlucy

Ditto for the anti-anxiety meds - I didn't even know about them until after I had a full on breakdown.

I would have gotten a second opinion on my final pathology to clear up some discrepancies regarding grade and my oncotypedx.

Otherwise it unfolded just as it was supposed to unfold.

Cheesequake

Thanks all for your insight, it's incredibly useful for someone just starting to make all these decisions.

AmyQ

You can see my dx and treatment in my signature but the only thing I would do differently, no reconstruction. My life has been hell these past 2 years because of the reconstruction pain and tightness. Thankfully it's about to end. I'm having my implants and excess skin removed for good.

Good luck to you

Amy

Cheesequake

Just wanted to bump this for anyone else that might want to contribute. Still very much learning from your experiences - thank you ALL for sharing!!

tgtg

I would do nothing differently--I would again opt for lumpectomy and rads, and would also again decline hormonal therapy, since the risks far outweigh the benefits for me. And I definitely would keep up my fitness regimen up to and after surgery, since working out at the gym (with some arm limitation at first, of course) on 3 days and doing long walks on the other 4 really made me feel great and got those healing endorphins going! My surgeon reminds me at all my follow-ups to keep active and exercising, which I do.

My quality of life was no different from before: I remained fit and happy as before. My rad onc suggested at our planning session that I could compensate for the added hour of rads (including the drive) by cutting out another activity if I started feeling tired, but I never felt a bit of fatigue or lack of energy during the 35 sessions, most likely, she said, because I was exercising throughout treatment. She burst out laughing when I told her that if I had any more energy she would probably suggest using Ridalin for hyperactivity!

Astarte

1. Would you do anything differently? Yes indeed. I would have asked more questions. I would have asked why I wasn't being given another chemo drug if the one I was on wasn't working, as that was the purported purpose of the study. I would have probably not done the study at all because in retrospect I would have wanted the surgery first. They told me my cancer wouldn't get worse. IT DID. I had one suspicious lymph node and one big tumor at the beginning. When it was finally surgery time I had twenty six (26) lymph nodes removed, plus my big tumor. I think it was the wrong decision to wait on surgery. And my boobs are a LOT smaller than I asked for. I asked for perky B's. I went from DDD to tiny A cups, I can't even buy a bra in a store or online. I'm doomed to damned sports bras.Yes, my back is happier, but I'm a carpenter's dream.

2. How different was your quality of life during treatment? (Better, the same, worse, much worse?) I now am on a second round of chemo because the first didn't work. I had to work like a dog, be treated like a whipping boy at work, and train someone all while going through chemo, and puking in buckets. I gave a lot of myself to be there for work, and it didn't and doesn't mean shit to them. It hurts.

At home, I feel like my almost two year old son gets the short end of the stick. I'd love to take him places and do more things, but I don't have the energy and he is my world. Everything I do, I do it for him. My marriage has deteriorated into nothingness and I don't know that it's savageable.

Sorry this turned into a grouchfest. I'm sick of being sick already. I'm sure you can commiserate. Edited to say: Anything is better than the alternative after reflecting. And I know I certainly don't have it the worst. There is always someone worse off than you are. Sad thought really.