Topic: Dreading Upcoming Appointment

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned — Meet others concerned about developing a recurrence or metastases.

Posted on: Jun 22, 2022 06:00PM - edited Jun 22, 2022 06:11PM by ratherdisappointed

Posted on: Jun 22, 2022 06:00PM - edited Jun 22, 2022 06:11PM by ratherdisappointed

ratherdisappointed wrote:

I was diagnosed three years ago and treatment was quick and aggressive. I've always had a mix of uninterest in and fear of all things medical, but I have done what a “responsible person" is supposed to do.

Around the same time as my breast cancer diagnosis, I was having extremely heavy periods and was found to have large uterine fibroids. My GYN recommended I have an embolization procedure since menopause was still “far off" for me. No one told me that chemo puts you in menopause. (Did she not know)? I'm only mentioning this because it was extremely painful and disturbing and was not a wise way to begin cancer treatments.

I made it through the treatments (including Taxol-induced anaphylactic shock, uncertainty about my heart function while on Herceptin, unnecessary liver scans when it was the tamoxifen damaging my liver, side effects from Letrozole, etc). I feel that I have had enough. So, last Fall I stopped taking the Letrozole, cancelled my oncologist appointment, refused genetic testing, and cancelled a 6-month mammo follow up (they saw something they wanted to monitor)

I am going for my yearly mammogram next month and am steeling myself for a scolding at the “breast center". I usually feel stressed and humiliated but now it is a losing battle to hold back the tears. I do not feel well mentally or physically. I feel like I am nagged about more tests and scans but do not get good answers to my questions. Examples:

Chance of recurrence when I had two different cancers at the same time? How do you do a breast self exam when there's so much scar tissue and fat necrosis? Is it really normal, as I've been told, to have pain in my breasts? Is it alarming that some of the pain is on my side, below the armpit, where my breasts were kinda stapled down during the reduction?

Why was my GYN (the partner of the one described above) so adamant that I should not take hormonal therapy if lab tests show I am post-menopausal?

Thank you to anyone that has read this far! I really just want to get through the appointment next month. This is my first post. I hope the info below shows up. BUT I did join when I was first diagnosed and read hundreds of posts that helped me get through my treatment. I do not have any support at all except my husband (who is very kind but clueless and easily upset).

I guess this is the real question - I am really not too bothered about a recurrence, I think I am just hoping that is either nothing, or that I am end- stage, so I can easily refuse treatment. Is that crazy?



Surgery 8/1/2019 Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel Chemotherapy 9/9/2019 AC Targeted Therapy 12/2/2019 Kanjinti Radiation Therapy 12/30/2019 Right breast, Left breast Hormonal Therapy 6/22/2022 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER-/PR-, HER2+ Dx ILC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2-
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Jun 22, 2022 07:19PM exbrnxgrl wrote:

Ultimately all medical choices are up to you regardless of what anyone else thinks. I am no fan of medical appointments, tests, scans, etc. but since I am stage IV, and want to live, I have done it for just about 11 years. Why do you think “end stage” patients easily refuse tx? If you are speaking of stage IV members who have blown through all possible tx, that’s a very different thing than you are proposing. Even if you are stage IV, death is usually not quick and without medical intervention, not painless. Again, it is your choice but please consider speaking with a therapist and your mo so that you can understand if you’ve had progression what that means and all it’s implications. Letting nature take its course is not often pretty nor easy. If your husband is easily upset this course of action won’t bring him any comfort.

I also had uterine fibroids. I had a myomectomy, a uterine artery embolization, and finally a hydro thermal ablation. The last one worked and I never had a period again. Yup, I disliked every appointment, every procedure, and every test but I was looking at the long game. That’s the thing with an ongoing medical condition. We may dislike the processes involved but it’s the long game we’re focused on.

I wish you the best with whatever you decide but again urge you to speak to professionals to truly understand you situation, fears , and frustrations. Take care

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jun 22, 2022 08:40PM elderberry wrote:

ratherdisappointed: I second exbrnxgrl. I hate all the scans and tests and infusions but I want to know where I stand so I can go on living as good a life as I can. Take your husband's hand in yours and move forward.

De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Jun 22, 2022 10:44PM ratherdisappointed wrote:

Hello again. I really appreciated both your responses. I was also surprised to receive a very kind, potentially helpful message from the mods.

Exbrnxgrl - I truly appreciated the fact that you really read my whole post. You are 100% right, and I will probably get similar advice next month at my appointment. I will definitely consider counseling if I hear I’m “in the clear” for now. I just can’t get over the fact that I felt so much healthier before all these treatments!

I am not a fearful person in any other way. I am considered by others to be very brave in all aspects of life! I just can’t / don’t want to handle any more personal health problems. This is frowned upon in our society. But I can’t be the only one who feels this way? I would guess some people just stop going to any appointment. Who keeps track? I do feel terrible for people who would get treatment if they could afford it.

Perhaps this is not the right website / forum for my dilemma. I realize most people must come here because they want as much treatment as they can so they can live as long as they can. The Long Game. I used the term “end stage” without any concrete meaning. I apologize because I may have offended. There has to be a term for the point where further treatment would not give “meaningful” results. I suppose I am thinking about a DX “far enough along” where a person would be forgiven and understood if they decided they’d had enough treatment. Forgive my ignorance. I think most of us have witnessed terminal illness but every case is different. I have seen people get over treated (in my opinion) and that can be ugly as well.

I understand that no one likes procedures. I dutifully went through lots. I do many many things I don’t want to do. I have been the most responsible person in my large family and I could write a book about what I’ve had to do!


Surgery 8/1/2019 Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel Chemotherapy 9/9/2019 AC Targeted Therapy 12/2/2019 Kanjinti Radiation Therapy 12/30/2019 Right breast, Left breast Hormonal Therapy 6/22/2022 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER-/PR-, HER2+ Dx ILC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2-
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Jun 22, 2022 11:37PM wrenn wrote:

Ratherdisappointed. It is ok to come and ruminate about your experiences. There is some interesting stuff online about over medicalization and unnecessary clinical intervention and I think most people know when they get there and have had enough.

Sherwin Nuland has written a book that was interesting to me about this kind of thing. It's called How We Die but it not just about death. He has some stuff on youtube. I preferred the book.

Keep vocalizing your feelings even if just to yourself. I think it helps.

Wishing you the best whatever you decide.

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Jun 22, 2022 11:47PM exbrnxgrl wrote:

rather,

We have had a few members consider doing nothing when dx’ed. Almost all stopped posting so their story ends there. We did have one member who refused to get a dx when it was apparent she had IBC. She continued posting about what she had to do to deal with the fungating tumors and other miseries as her disease progressed. She passed away after a few years and her sister confirmed that she did indeed have bc. Yes, she did it her way but suffered for quite a while before she passed. Not sure how this was better than conventional tx and medical appointments but we all have a choice.
You are correct in that the overwhelming goal of most bco members is to live. Almost everyone who is dx’ed with metastatic bc, the only kind that kills you, have many treatments to try before reaching the point where they are out of options. I have been a stage IV member for almost 11 years. I have seen people stop tx but only because they truly ran out of options or had severe reactions to a tx. Although the course of each person’s disease is not predictable, one often has years before you reach that point. Rarely does an mbc patient get dx’ed and then pass away a short time later.

I once again urge you to speak with someone about the realities of such a decision before making a choice. Letting the disease take over with no medical intervention will not be easy, pain free or peaceful and it seems as if you might think this is easier than medical attention but it is not. You mentioned your husband being sensitive. How would he deal with the consequences of unchecked progression? I don’t get upset easily but it would be beyond upsetting to see a loved one go through this. You do not know if you have mbc yet and even if you do you could have years ahead of you. Treatment choices always belong to the patient and although I may not agree, if a patient makes a fully informed choice, doing nothing is an option.This is a choice that very, very few make on bco and I am not aware of a website/forum that may support no treatment but they may exist. Tak care.


Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jun 23, 2022 01:33AM - edited Jun 23, 2022 01:44AM by ratherdisappointed

wrenn - thank you for your understanding post. I will definitely look up the Nuland person as I am not familiar. I do not believe in any god and have been very interested in the rights of the individual - abortion, right to die, natural burial, etc for a VERY long time.

Exbrnxgrl- I appreciate your second post, I have tried, but failed, to express that I am a very “responsible person" - in pain but preparing myself up for possible follow up care. I haven't even been to my appointment yet!!! I have (grown) children to consider!!! but wanted to think about my options. You persist in saying “ it seems as if you might think this is easier than medical attention but it is not.“ I have personally, closely seen some very ugly medical attention. And not every patient comes to this forum. Are you really so sure you are in a position to judge me? I hope we can agree that we have had different experiences and can make different choices. ( Not that I’ve had a chance to make a choice yet. Geez Louise!) But I do wish you a happy many more years

Surgery 8/1/2019 Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel Chemotherapy 9/9/2019 AC Targeted Therapy 12/2/2019 Kanjinti Radiation Therapy 12/30/2019 Right breast, Left breast Hormonal Therapy 6/22/2022 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER-/PR-, HER2+ Dx ILC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2-
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Jun 23, 2022 01:44AM - edited Jun 23, 2022 01:50AM by sadiesservant

ratherdisappointed, I would add to the excellent advice you have received that chemo induced menopause is a possibility, not a certainty. It depends very much on your age and the aggressiveness of the chemo. I was thrown into menopause at the age of 39 but was the exception rather than the rule at the time. Like many things, it's a bit of a crap shoot.

I would also urge you to think through your next steps and seek out advice. As others have said, death from MBC is often neither quick nor pretty and treatments are often far scarier in our minds than they are in reality. As you can see from my bio, I've been through a lot of treatment and, to date, have rarely suffered extreme side effects. It's all been pretty manageable and preferable to the impacts of liver failure, lungs full of fluid, blockages related to advancing cancer and pain from bone mets, etc. Everyone needs to choose their own path but I would implore you not to wish end stage cancer on yourself. Let's hope this conversation is pure speculation and all is clear!

Edited to add: Just saw your recent post and want to assure you that you are not being judged. Your comment about seeing some terrible things with treatment prompted me to add something I heard from a friend recently. When her spouse was diagnosed with terminal cancer her oncologist told her she would do everything she could to prolong her life but she would not prolong her death. This resonated with me as my MO and I have discussed situations where it’s clear treatments should stop but physicians keep treating, decreasing quality of life. I’m not sure if this is what you are referring to but it is an issue, particularly in some jurisdictions

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other
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Jun 23, 2022 03:38AM exbrnxgrl wrote:

Goodness! I am sorry you thought I was judging you. Based on limited prior experience here, most members who thought about letting the disease take its course were unaware of what a difficult process that would likely be. I have no way of knowing of personal experiences you’ve had that play into your thought process as my mind reading skills are not as sharp as they once were 😊. Take care

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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Jun 24, 2022 04:04PM wallycat wrote:

My heart goes out to you, Rather.

I read your post and it is as if you are in my head. I hate medical crap and I hate feeling vulnerable and I hate having monitoring and checking and I hate bad health news. Having said all that, it is ultimately our choice on whether we do screenings and follow medical advice. Getting screened and treated won't necessarily allow us to have a pain-free exit or a longer exit, it is just that these are the best options we have and they *usually* allow a longer life. It is also important to note that we are allowed to question what our doctors suggest. I always ask my onco why she orders things, why my labs show something and now that my DH is also in her care, I send her peer reviewed articles and question treatments he is getting. Example, he is now able to take 1 pill a day vs 4 pills early in the morning with a one hour breakfast window. So if your gyn experience was less than stellar, and you have other choices, find someone who resonates with you.

Best to you. We are our own advocates and no one will care for us more than we will. Do what you can. Don't hesitate to ask for help dealing with some of this if that is the delineator that keeps you from seeking medical care.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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