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Topic: Which is the worse part of cancer treatment?

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Jul 12, 2019 01:32PM

Xxxxxxxxxxxxxxx wrote:

I know it is something very personal but I'm wondering wich part of the tx was the worse part to you. The chemo, the SE from the surgery, the rads, the fear of recurrence, the antihormonal therapy? Thank you

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Jul 12, 2019 01:51PM JaBoo wrote:

for me, it's the antihormonals. and I am saying this with every treatment fresh in memory and after only 6 months of antihormonals. maybe being under 40 makes this part esp. hard, I don't know

dx at 38 Dx 5/22/2018, IDC, Left, 2cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/14/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 6/19/2018 Lumpectomy: Left Hormonal Therapy 7/16/2018 Zoladex (goserelin) Chemotherapy 7/16/2018 AC + T (Taxol) Targeted Therapy 9/13/2018 Herceptin (trastuzumab) Hormonal Therapy 1/11/2019 Aromasin (exemestane) Surgery 1/21/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/27/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Nerlynx
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Jul 12, 2019 01:56PM - edited Jul 12, 2019 01:59PM by exbrnxgrl

The worst part? Being stage IV. Although I have done well for 8 years, progression possibilities are always lurking in my mind. It takes it's toll on one, mentally and emotionally, even if I have been fortunate enough not to have had too many awful physical se's. I have switched between all three AI’s, not because of progression, but to try to outwit the se’s. Still, aching joints and bone pain look more attractive to me than progressiondeath.I think the stage IV perspective is different, because we know that chances are not in our favor of it ever ending well.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 12, 2019 02:21PM Scrafgal wrote:

chemo ...FAC to be specific

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/23/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Jul 12, 2019 02:56PM hapa wrote:

I'd say its a tie between radiation and fear of recurrence. My risk of recurrence is pretty high even with all the treatment I've had. Also, I was really into financial planning for my future and it all seems so futile now.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Jul 12, 2019 03:49PM movingsoccermom wrote:

AI's without question. The side effects were so horrific for me that I will never use them again--not even to save my life, since I was unable to live while on that drug. I am beyond relieved to be tolerating Faslodex, and following others who have had multiple years while on this treatment.

Interesting question. Fascinating to read experiences.

Dx 3/3/2015, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/27/2015 Whole-breast: Breast, Lymph nodes Dx 5/7/2019, IDC, Right, 2cm, Stage IV, metastasized to lungs, Grade 2, ER+/PR+, HER2- (IHC) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Jul 12, 2019 04:18PM Spookiesmom wrote:

chemo. Red devil, taxotere. Even though AIs put me on a walker, chemo was the worst.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Jul 12, 2019 07:37PM BellasMomToo wrote:

The diarrhea from Perjeta was the worst experience for me. Because it was so unpredictable, I refused to go anywhere where I didn't have easy access to a bathroom. So I refused to go on long car rides or car rides that involved crossing a bridge (for fear of being stuck on the bridge due to bad traffic) that meant I couldn't visit my mother before she died because it was an hour long drive (without traffic) and involved crossing the bay bridge. (She died just before my 4th infusion.)

Chemo also gave me an abdominal abscess and my port gave me a DVT. But the "D" was the worse part of my experience.

I was hormone negative so I didn't need hormone treatment and I had a UMX and didn't require radiation.

Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/1/2016 Herceptin (trastuzumab) Chemotherapy 11/1/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
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Jul 12, 2019 08:58PM santabarbarian wrote:

The last two chemos. Taxotere/Carboplatin. Unreal anemia and mental exhaustion. I could not walk from my car to my house without gulping for air. Lx was a breeze, and rads was a breeze until the last 7 treatments (but it also healed really fast).

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jul 12, 2019 09:09PM - edited Jul 12, 2019 09:10PM by Xxxxxxxxxxxxxxx

Thank you for your answers. I think the worst thing so far was the surgery. But of course, I just had chemo before it, I still have to do rads and antihormonales. For women in stage 4 there is no doubt that this is the worst, but even in stage 4 maybe you have been better with some treatments than others. Thanks for sharing your experience. Hugs

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Jul 13, 2019 05:02PM edwards750 wrote:

Probably the fear of recurrence because that will always be there for me.I’m 8 years out but we all know there are no guarantees. I had IDC, Stage 1b, Grade 1. Surgery was fine and the radiation was too. Tamoxifen was another story. Joint pain and hot flashes were brutal at times. Luckily I only had to take it 5 years.

Diane

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Jul 13, 2019 05:06PM marijen wrote:

I would say it is all bad. Surgeries, radiation, lymphedema, AI, fear. It all bites.

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Jul 13, 2019 05:16PM LeesaD wrote:

Worst part for me also is fear of recurrence. i was never afraid of the treatments ...I had 8 surgeries in 18 months and throw in chemo radiation and AI’s and a bout of severe sepsis🙄 . I knew I’d be able to get through all of it ....and if someone told me let’s do every single one again and it will guarantee it won’t come back, I’d go through it again. Unfortunately I don’t have that guarantee and the fear of it coming back is sometimes paralyzing. I see my onco in two weeks. First time we’ve gone six months without seeing each other and bloodwork. I’m terrified.
Oncotype Score 3, 2/4 Sentinal Nodes micromestasis so pushed for ALND for 'peace of Mind' and surprise found 2/14 positive axillary nodes Dx 2/3/2017, IDC, Right, 3cm, Stage IIB, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 3/26/2017 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/17/2017 Lymph node removal: Underarm/Axillary Chemotherapy 5/8/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/1/2017 Hormonal Therapy 9/7/2017 Arimidex (anastrozole), Zoladex (goserelin) Surgery 11/16/2017 Prophylactic ovary removal Surgery 1/29/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Jul 13, 2019 05:57PM Newfromny wrote:

So far chemo, TCHP, surgery wasn’t easy but not nearly as hard as chemo, radiation was a chore every day for 6 weeks but really wasn’t bad. I haven’t started an AI yet, not looking forward to it

Dx 10/2/2018, IDC, Left, 5cm, Stage IIB, Grade 3, ER+/PR+, HER2+ Chemotherapy 10/25/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 3/12/2019 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right
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Jul 13, 2019 06:12PM RosieRed wrote:

For me, it was chemo (AC-T). So many SEs to deal with on a daily basis and mentally feeling exhausted from pushing myself to go to each infusion. Looking back, I don’t know how I ever did it.

Dx 5/9/2018, LCIS/DCIS, Both breasts, 6cm+, Stage IIA, Grade 2, 8/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 6/14/2018 AC + T (Taxol) Surgery 11/14/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/8/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/1/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 2/9/2021, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 2/21/2021 Faslodex (fulvestrant) Targeted Therapy 2/21/2021 Ibrance (palbociclib)
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Jul 13, 2019 06:21PM wrenn wrote:

The worst part for me was psychological. Surgery complications seemed endless but it was fear of unknown that I found the hardest to deal with.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 13, 2019 06:25PM Betrayal wrote:

I second Marijen's and Wrenn's comments. There has not been one pleasantry associated with having BC but fear of the unknown remains the driving force.

Surgery 2/1/2016 Lumpectomy: Left Surgery 2/1/2016 Lymph node removal: Sentinel Surgery 3/4/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/25/2016 Arimidex (anastrozole) Hormonal Therapy 5/19/2017 Femara (letrozole) Hormonal Therapy 6/16/2020 Aromasin (exemestane)
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Jul 13, 2019 06:32PM Sjacobs146 wrote:

Chemotherapy, absolutely. I had never felt so physically bad in my entire life. Everything else is easy in comparison. No regrets though. As I approach my 5 year cancerversary, everything else is getting better every day. I worry less about recurrence, due to weight loss and yoga, AIs are manageable.

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 13, 2019 08:43PM MountainMia wrote:

This is a great question with interesting answers. I'm not really sure how to answer. I haven't had rads yet, so maybe that will be the worst!

There's not much good to say about it all, but for me the worst is the psychological part. When I was diagnosed at the end of February, I was probably in the best shape, mentally and physically, in my life. Besides the confusion and feeling like I was stumbling through someone else's story, one of the first things I felt was my self-image as "healthy" was stripped away. I was strong and sturdy; now I'm weak. That is mentally hard, worse in a lot of ways than catching sight of my bald self in the mirror.

Along with that is the unknowns for the future. I'm not sure it's exactly "fear." I don't think I'm afraid. But I'm really really aware that bad things could happen, that I have less control over the path of my life than I'd assumed. That my husband, who is 14 years older than I am, might not have me around when he needs me most. There's sadness with that thought.



The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jul 13, 2019 09:02PM Scrafgal wrote:

MountainMia

I remember feeling that way early on...stripped of my healthy identity. It's a mental trip. I don't know where you are in this process, but I just wanted to say that I now feel strong again. I hope the same for you in the near future.

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/23/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Jul 13, 2019 09:27PM MountainMia wrote:

Thanks, Scrafgal. Lumpectomy done, chemo done 7/5. Now I'm on hiatus until mid-August before starting radiation. Taking the break will let me see my son's family in OK in early August. I don't want to expect too much, but I'm hoping for some good recovery between now and then.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jul 14, 2019 12:01AM rubyredslippers wrote:

worst part, apart from the emotional side of things, is by far medical oncologists and the bullying and nastiness they dish out when you refuse their drugs. Add to that their cytotoxic intravenous drugs they call chemotherapy. Dark ages, grasping at straws stuff.

I no longer feel comfortable displaying my diagnosis.
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Jul 14, 2019 03:53AM edj3 wrote:

MountainMia, you wrote:

When I was diagnosed at the end of February, I was probably in the best shape, mentally and physically, in my life. Besides the confusion and feeling like I was stumbling through someone else's story, one of the first things I felt was my self-image as "healthy" was stripped away. I was strong and sturdy; now I'm weak. That is mentally hard ...

You summed up what I'm feeling: stumbling through someone else's story, stripped away my identity as healthy. I don't even know who I am at this point (which may sound dramatic but man it's true). For me, it's the psychological impact that has been the worst.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2019 04:34AM Racy wrote:

Hair loss.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Jul 14, 2019 04:45AM Sjacobs146 wrote:

Rubyredslippers, you need a new MO. Mine is wonderful.

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2019 08:34AM DLJ46 wrote:

For me, it is the SHEER TERROR of the diagnosis. It is the clock ticking on my shoulder, getting louder, possibly getting closer to that alarm...it is the anxiety of the unknown after completing treatment of lumpectomy, chemo, and rads for TNBC.

Take care

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Jul 14, 2019 10:20AM Xxxxxxxxxxxxxxx wrote:

Rubiredslippers: what was the drug you refused to take? I confess that I have thought a lot about refusing treatments (rads for example) but if you are a patient of social security in my country you have to had the whole pack, otherwise they will not provide you with medical care in the future. If I were alone I would not worry but I do not want to be a burden to my family in the future if I can avoid it, even knowing that these treatments are no guarantee of anything

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Jul 14, 2019 10:27AM Xxxxxxxxxxxxxxx wrote:

It is interesting to see what different experiences we have with cancer. I was hoping I could think that the worst is over, but now I don't know. Thank you all for sharing!

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Jul 14, 2019 10:32AM santabarbarian wrote:

Mountain Mia,

In terms of one's identity as a well, healthy person-- one of my close friends survived several cancers some years ago... she had colon, breast, melanoma. Nothing further has happened in about 20 years, and she is going strong. She was a great resource for me.

She said, "Look, you're a good apple with a brown spot. They're going to cut out the brown spot, and you'll go back to being a good apple."

It was comforting to me, and I hope it comforts you too.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jul 14, 2019 10:39AM MountainMia wrote:

santabarbarian, yes, thanks. I like that thought. :)

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jul 14, 2019 11:01AM - edited Jul 14, 2019 11:03AM by Xxxxxxxxxxxxxxx

BellasMomToo: I'm sorry that you were not able to visit your mother before she died because of the chemo SE's, as if the treatments were not hard enough. Hugs

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