Question about refusing treatment.

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brainyblonde_76
brainyblonde_76 Member Posts: 3
edited December 2017 in IDC (Invasive Ductal Carcinoma)

hi there! I am new to the forums and don’t know how to set the diagnosis/treatment etc part of my profile so if someone could help me please :)?

I have grade 2 (I’m an ex pat living in the UK so we use the word “grade” vs stage multifocal invasive ductal carcinoma with 1 of 10 lymph node involvement and signs of spread to the lymphovascular aka blood system. I had a modified radical mastectomy of my right breast October 30th where they found 6 tumors the smallest one mm the biggest 22mm. I also have 2 lymph nodes that lit up on a scan on my left side which one was too deep in my neck to biopsy and the other under my arm they took five tissue samples that came back inconclusive so waiting for a pet scan.

They are starting me on Zometa infusions, I had my first Zoladex injection and due to start Letrozole. I have other comorbidities like genetic pancreatitis, cyclical vomiting syndrome, had a stroke I’m on meds for, and a 2 time corneal transplant recipient incheonic rejection and that’s not everything I’m on meds for so on about 25 meds a day. I’ve had almost 50 surgeries in 33 of my 41 years on this earth. They said no radiation due to the Mastectomy and the oncotypeDX said my cancer would not respond to chemo. I had a partial hysto almost 10 years and waiting for ovaries to be removed.

My question is are there any in the same boat as me who refused further treatment after their mastectomy? Or just had the ovaries removed but refused the rest of the hormone treatment? With my other issues I’m not well day to day as it is, I even have a peg feeding tube in my belly to help with nutrients. My thoughts are giving the treatment a good college try but if the side effects are too much to deal with or make my other side effects worse refusing the above treatment. I can’t have many hormone treatments they said because of clots and having had a stroke so choices are limited. I just feel like it’s the right thing for me. How long is life expectancy when it’s just my flat lymph nodes activity like I listed above, can I go without treatment? How high are rates of recurrence etc. I want a good quality of life not feeling worse than I already do some days




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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Dear brainyblonde_76,

    Welcome to the BCO community. I you go to your profile where you entered your diagnosis information you will see this reminder:

    Note: Adding a new diagnosis is private. You can update them to public under Settings. Public diagnoses will appear in your Discussion Board signature.
    Privacy Statement

    You need to make your information public if you want it to show up in your signature line. It may not show up until your second post. Let us know if you need more help. The Mods

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  • chronicpain
    chronicpain Member Posts: 385
    edited December 2017

    Brainyblonde, so sorry to welcome you to this forum. Thank you for providing all these details. You have been through so much, and now BC.

    No one can predict life expectancy with your unique constellation of issues, with and without hormonal therapy. Your other problems are not trivial and there is no perfect solution, You are in UK and you say without many resources, but if it were me, I would look into getting three independent MOC opinions asking your specific set of questions with all your information available to them plus an exam, e.g., looking at your functional status, and have preferably at least one MOC opinion from a respected doc in the "private" sector just for opinion, with any cash you or friends/family can come up with for the consult.

    "The old college try" , with all your limited data presented, may be what I would lean to, but there is certainly more to your difficult medical story.

    Best wishes and hope for you to do as best possible.

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  • brainyblonde_76
    brainyblonde_76 Member Posts: 3
    edited December 2017

    Awww thank you for the welcome honey, sad circumstance or not we made a new friend both of us so that’s something positive :). I hope to hear from someone who only had the mastectomy then just left it at that with my stage cancer and lymph node situation similar to me. The oncologist called it more “future proofing” if you will which I’ve not heard that term before (maybe it’s a Brit thing lol). At the end of the day I just had my first Zoladex shot and been feeling pretty crappy now waiting to start Zometa infusions as well as Femara tablets. I just wonder if quality of life outweighs quantity here, it took me 3 months just to see this onco doc!

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  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited December 2017

    brainyblonde,

    I think chronicpain gave you some really good advice.

    I am really sorry you have to deal with this on top of everything else.

    I just wanted to say welcome. Only thing I would add to what chronic pain suggested would be if you have doctors who know the details of your history, and you trust them, you might reach out to them with the recommendations you get.

    Your situation is quite complicated. I had some connective tissue issues in the past that my oncologist stated should make any good radiation oncologist nervous. Like chronic pain, I planned to refuse radiation. Thank goodness it did not get recommended for me. I had a mastectomy but due to chest wall invasion, it was still a question. I did have neoadjuvent chemo and it did allow a clean margin on my chest wall.

    I made it on Tamoxifen about two and a half years. Got a clot in my heart and was told to discontinue it. I opted not to try anything else. IThat said, I have friends who do just fine on it.

    Good luck to you. I will be interested to see others weigh in here. I get what you are saying about quality of life

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  • brainyblonde_76
    brainyblonde_76 Member Posts: 3
    edited December 2017

    thanks for the reply HoneyBadger! Yes there was good advice there and yes I've been in the UK 7 years now before my husband decided to take his pecker to greener pastures. I also found out about the chronic rejection about 2 weeks after he said he and his adult daughter said he wanted a divorce: anyway back to this topic I've had the same docs for about 5 of those 7 years so for the most part. They don't say a whole lot about it, I saw a dentist last week so I could start Zometa infusions because it can cause bone necrosis then they said “oh no you need to see a hospital dentist" (insert angry face here) the other dentist said my bones are fine but my lymph nodes are quite swollen. They said I need to wait till next year now to start the infusion and can't take the Femara until my 2nd Zoladex shot.


    I know I'm pnly 41 but I'm on my own so if I get sick I'm kinda screwed, I have a little chihuahua named Kangaroo aka Roo who I've had since he was 6wks old who's 11 now I brought from the states with me who is now slowly dying from progressive liver disease not cancer (we had our biopsies 2 wks apart) and he's got doggie dimentia starting from the liver toxins going to the brain and a tracheal collapse. My point here is I have friends who can help sometimes but they have jobs, families and lives of their own so if I get too sick I need to be here for him. He's the little boy in my thumbnail picture:). The one thing I think drs lose sight of is we already don’t feel well and our cancer bodies are all going through hell just from being diagnosed alone. But on top of it we need to feel well enough to function day to day especially when we don’t have consistent help or in my case don’t drive to get stuff don

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  • windingshores
    windingshores Member Posts: 704
    edited December 2017

    I also have a number of health issues, many of which make certain treatments impossible. But I take Femara faithfully, and have for 3 years. Please don't let the negatives on this forum scare you away from at least trying an aromatase inhibitor. There are things that help: exercise for the first 20 minutes may hurt but keep going and by 45 minutes you feel better. I walk and do Tai Chi. A good mattress helps too.

    If your Oncotype said chemo wouldn't help, then that must mean it was a low score which is excellent. Did you get your report? It gives risk with and without hormonal therapy.

    Interesting that you are getting Zometa already, and had Faslodex. I had BMX and went straight to Femara. Do you have osteoporosis? (I do have osteoporosis but cannot tolerate any meds, have tried hard). Was your stroke from atrial fibrillation? (I have that too so now they won't give me Reclast, and I guess they would only give me Zometa for Stage 4 due to the way these meds affect afib).

    I hope you will try an aromatase inhibitor. It may be tolerable for you, more than you think, and with a low Oncotype, the med will halve your risk for spread. With lymphovacular invasion, like you, I would not take a chance, and you have positive nodes as well. The hormone blockers will really help you.

    Look at your Oncotype Dx report!!

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  • HoneyBadger47
    HoneyBadger47 Member Posts: 98
    edited December 2017

    Wow, you have a lot you are dealing with.

    Roo is precious. What a cute name. There are lots of threads here that I think you will find helpful. One is the Steam Room for anger. You can leave a rant about your husband (turd) and just park that one while you focus on your health and your sweet dog’s health. Speaking of which, lots of pet lovers on these boards. Check out the comfort dogs (something like that) thread. There is also a cancer with other comorbidities thread. You may find support there from men and women in treatment dealing with other health challenges.

    Pets are family in my house and our “kids” so I completely understand that you want and need to be there for Roo.

    I was alone for many, many years. I hated to ask for help and it is scary. Glad you have friends for support but agree they can’t do it all. All of us want to keep our independence and quality of life. Can you get to your appointments and other activities by bus or train now? If you get out and about by walking, even better. That would be a good benchmark for you. If you try the medication and can still do that, I would say that would be a really good sign.

    Here’s what I see with your current situation....you have had your mastectomy surgery and axillary lymph node removal behind you. So you will not have to worry about help with that (good job getting through that!).

    I see the no chemo and no radiation as a silver lining (if there can be one with this crappy diagnosis of breast cancer).

    The targeted hormonal therapy has been shown to shrink tumors. The thing I don’t like is no one really knows who it will or will not help regarding preventing recurrence in earlier stages.

    I like your approach of the college try. That’s what I did. I would just make sure you get those opinions that chronic pain suggested. Know what side effects are considered a pain in the ass (hot flashes) vs. what could be dangerous for your specific issues. I never thought I would get a clot, but I did. It has resolved and I am safe. It is now recommended I don’t take that risk again and I agree! Ask what side effects can be reversed if you were to get them and you chose to quit. What can’t be reversed, e.g., arthritis (and I don’t know the answer to that one) 😀 I know nothing about Femra. I know Tamoxifen can cause eye issues. For me that was a risk I could take. For you, probably no way!

    Maybe reach out to a pharmacist (chemist in the UK?) and give your full list of current Ned’s and discuss possible interactions or very detailed potential side effects.

    Not to oversimplify, but if you were given the option to give your sweet dog a pill that could drastically reduce anymore progression but it had a long list of side effects, would you do it and monitor him really closely? I know I wouldn’t put my dog through chemo but I have given him skin allergy medication that could damage his liver. We kept an eye on his labs. He is okay. Evaluate your choices as closely as you would for Roo and you will make the right choices. 🐶

    So glad you went to the dentist. I had two teeth break while on chemo. That sucks that you were referred to a hospital dentist but maybe good that he noticed the nodes and gave you more time to make your choices. Willing to bet you don’t get bad news on those. You have lots of other stuff medically happening, could it be from that?

    Okay. I rambled and not sure if any of it is helpful. Search like crazy on this site and look through old threads. There are many on the targeted hormone therapy debate!

    Glad you have docs there that know you and your history. If you have any in the US that know you really well and how you may react to medications, might not hurt to ping them too.

    I am too tired to proofread, so sorry for the typos!


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  • dtad
    dtad Member Posts: 2,323
    edited December 2017

    brainyblonde....Hi there. I'm so sorry you are suffering. I have multiple autoimmune disease as well as BC. I have had poor QOL for 15 years. This is the main reason I have refused anti hormone treatment so far. I did have a BMX though. Everyone has to make their own informed decisions about treatment options. We all have our own individual circumstances which affect our decisions. There is just no right or wrong. Good luck to all navigating this complicated disease.

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