Choices

claoh

Is anyone over 70, have alzeheimer's in family, and decide not to combat 3negative breast cancer?

Not sure I want the battle and end up with alzeheimer's down the road.

Dad had five sisters who had alzeheimer's end of life.

Sadiej

https://csn.cancer.org/discussion/326532/choices

I am only 66 years old with no Alzheimer's in the family. I can relate to your struggling to decide whether or not to do chemo. I had to go through chemo 10 years ago and just recently found out I had metastatic triple negative invasive lobular carcinoma that has metastasized into my lymph nodes and is also showing up on my sternum and thorax. This is a very hard cancer to treat and I swore up and down that the next time I had chemo I wouldn't do it. The only thing keeping me going as far as wanting to is my husband and my daughter. I also saw my sister die last year from cancer and saw how painful it was to her. I know this isn't an answer but really it's an individual decision. I hope whichever way you decide you find peace with it.

claoh

Thank you Sadiej for your input. I had just recently decided to decline chemo only to find out that chemo and radiation is also used in palliative care. Triple negative is a real bugger. Could you share more of your sister's path through cancer. Did she do chemo/radiation for treatment? What avenue was used to try to ease the pain?

Sadiej

https://csn.cancer.org/discussion/comment/1706357#Comment_1706357

Hi Claoh,

I know the decision is to whether or not to do chemo is hard. I saw my dad who did not have chemo die of cancer. It took 3 years of it just eating him alive from the inside. It started as colorectal cancer and eventually ended up all the way up into his rib cage before he finally passed on. He was in a lot of pain and was bedridden for the last couple years before his life ended.

My sister had endometriosis that metastasized into her brain. She did chemo/radiation therapy/surgery to try to remove cancer from her body. She was in so much pain I can't believe how many different types of pain meds she had to take. She barely ate anything and was slowly wasting away. I think what did it in is when they did radiation to her brain. After the first treatment it was only a month before she finally died.

Cancer runs in my family. My dad had it, my sister had it, and my brother also died of cancer. His was lung cancer that metastasized into his brain.

This is my second go-round of cancer only this one is very bad. I don't like the outcomes that you see but yet at the same time even though my body is racked from the last chemo I feel that I'm being selfish both to my husband into my daughter and for that reason I will do this for them.

I have no idea what my quality of life will be after this chemo. But at the same time if I didn't do the chemo I know that within 6 months I would be dead. The pain is hard; not like my last one where I really didn't feel any pain. My last one was a ductal cancer and the sentinel node biopsy was negative when they took out the lump. This one that I have now has got my breast swollen three times the size of my other one. My arm is swollen, my lymph nodes hurt and my throat hurts. They said it's also into my PEC muscles. Every time I think a chemo I cry because I know what it did to me last time, yet at the same time I do not want to be selfish. I don't think I have that right even though my husband and my daughter thinks that I should go whichever way I want. I can't do that to them, I can't hurt them.

Again though, this is an individual decision. I can see the point of doing chemo and not doing chemo. I hope that kind of gives you a background idea that regardless of whichever way you go it will include pain. My feelings about being selfish are my own and should not have a bearing on how you feel. I just wish none of us had to go through this.

Sadiej

claoh

Thank you again Sadiej for your insight. It is the first one I've seen that realistically portrays what we're in for. I just got back from a vacation with my family. My sons and husband have accepted my decision to forego chemo, double mass, radiation, although it was hard at the beginning. As noted in your reply, either way it is going to be painful. That is exactly what I've been saying to them and I'm choosing to have the good days up front as long as possible.

I feel I am in limbo right now without a doctor but am reaching out to find a palliative one. Just got off the phone with a good possibility. Hope to set up an appointment soon.

Thank you again. My heart also goes out to you with this second round of cancer.

Sadiej

It's so sad when cancer cuts a life short. Although I haven't met you per se, I believe that you are strong to be able to make a decision like that.

Palliative care will be extremely important. I just met my palliative care doctor for the first time yesterday. (I go to the Cleveland Clinic). He has helped me so much with both the physical and emotional (chemo) trauma I am trying to deal with. But also for my husband who went with me. No matter how "strong" they say they are, they too have a need to be able to talk about losing (or possibly losing) the love of their life. Mine of course is nothing like what you and your family will be going through. I pray for peace for you in your decision.

When I left the palliative doctor yesterday my oncologist called to tell me that the brain scan I had a couple days ago showed a tiny mass (~1/64") on my brain. They will most likely go in with a gamma knife to remove it. It's the second thing I don't want to deal with... I told my oncologist about not wanting radiation treatments on my brain (because of what happened to my sister). Still, I'm grateful that it's the Cleveland Clinic. I don't think anyone else could have been as thorough as them in my diagnosis.

Today is the day for my full body PET scan. Somehow I feel like it will be confirmation of what I already sense. But still I hold out hope that I will be pleasantly surprised.

We both have such long roads to walk, but I don't mind walking with you as you should know by now that I will always lend an ear and a word of encouragement. ♥️

Pat

claoh

Pat, I'm so sorry to hear the news upon discovering the mass in your brain.

I'm sure there will be days I question my decision, but will remind myself that the "program" is also an ordeal

As you may sense, I'm at the beginning of this journey and still able to control my aches with over the counter meds. Your sharing was a real wake up call as to what is ahead, but something I really needed to hear.

I hope you are pleasantly surprised by the PET scan.

Sadiej

Morning Claoh

I got the phone call from my oncologist as we were traveling home from my PET scan (how's that for fast!!)

The news was good (?) as there is no body metastases, just a few other lymph nodes under my collarbone. I was afraid of the bone metastases. I've read about it and it sounds so horrible and painful. I think if they found something like that I would have sunk into a very deep depression.

I found this website (link below) that gives me some nice cross references and information on metastatic breast cancer found in the brain. I didn't like the fact that I saw that it could recur. I'm still struggling with that. Got to remember it's for my husband and my daughter and somehow I'll make it. 😭

https://www.cancer.net/cancer-types/brain-tumor/types-treatment

I also found a site for vaccine called RSV that came out in May of this year. I'm going to ask my oncologist if there is any way we could possibly get a dose of that so that I can take it before chemo. A few years ago I had sudden pneumonia it almost killed me. I was in the hospital for 2 weeks (it should have been three but I missed my husband) . They didn't know how to control it and we're throwing every medicine they could think of into my IV to get it to respond. Within 2 days of the beginning of that pneumonia my lungs have filled up to 99% and my oxygen had dropped down to round 76%. Also since I'm immunocompromised because of the chemo induced RA, this sounds like it would be a wise decision for me. I will be in a room with a group of people for my chemo and there's no telling who has what.

I look at you and don't know how you can do it. I think you have to be much more stronger than I am to continue on your path. You are one amazing person and I cry thinking about all the pain and suffering that you are going to have to go through. Mine doesn't mean anything compared to yours. God bless you. If there was a way I could hug you right now I would. I guess you're just going to have to accept a typed [[hug]]. This is going to be so tough on you. I won't talk you out of it of course because that's your decision but I know that I will miss our conversations as this continues in your body. I'm grateful that for now we can talk. Okay I'm really crying now and can't see his stupid keyboard.

Pat

claoh

I don't know if I'm strong or naive. I really don't have any idea what I'm getting into other than your thorough explanation of what family went through. I don't know how my suffering will be much more than yours.

My thought process was that I didn't want to give the next 8 to 10 months to chemo, double mas, radiation only to have cancer reoccur or get alzheimer's after. I did take an alzheimer's test and it came back that I was significantly more at risk. That is not an absolute that I'd get it, but does run in family.

I'm glad you got a better report than feared. What will RSV do for you prior to chemo?

Sadiej

Since I am 66 years old, have an immuno compromised system and have bilateral atelectasis, I am in danger of pneumonia, hospitalization or heart complications from the RSV virus. I'm hoping that they would be willing to give me this vaccine to avoid that.

I'm kind of hoping that you have read about what happens to mTNBC patients concerning metastates to the brain, the bones, the lungs etc. It would be good to be fully informed of what you will be going up against, as well as a plan on how you deal with any of these things should they happen to you. It would also be good for your family to know what's in store and how they too should handle it.

On a happier (?) note, I found this article and I think this will be good for me after I get through this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9866612/

Please let me know that you really did research what is going to happen to you. I guess maybe that will explain to you why I cry when I think of you and all that you are about to go through. ♥️

claoh

I try to do research, but there really isn't a lot I found out out there. That is why I was appreciative of your openness about family members. I do know it will not stay at the level I am experiencing now - only get worse. But I don't see how chemo/radiation is going to prevent that in the end. It will only delay it for a while. That is why I say I don't want to go through this two times. Again, I may be very naive.

You feel I am strong to proceed on my path. I feel you are very strong to proceed on yours. Both paths are so difficult.

Sadiej

I understand now. Your point about this not being the last go-round with this particular cancer comes into mind quite a few times for me. Thinking about the fact that when I'm done I'm not really done. That does bother me. They say that they have new vaccines out for this type of cancer but the trials they have at places like the Cleveland Clinic require that you've already gone through the chemo and are declared cancer-free. I just missed those trials. They're going on right now although they are still in phase 1 I don't see any way for me to catch up to it. I really appreciate your honesty and I feel that you really are special the way you approach this. Too bad we couldn't have formed a friendship

Sadiej

...sooner because I can see that I think we would get along really well. Sorry about the broken up message I accidentally hit post LOL. Obviously if there's anything I can do for you at all then you just need to ask. I don't understand why life has to be so difficult and why we have to pick our paths like this. It's pretty much been thrown at us and somehow we're supposed to go through it like everything's okay when you and I both know it's not.

Have you found palliative care yet? It's really helped me a lot - I'm actually getting full nights sleep I'll go this morning I woke up around 2:30 hurting but I didn't want to take my meds just yet so I waited until 5:30 to take them. Would be nice if you find someone that will actually take care of you and who you are and your decisions. If I tend to ask hard questions I don't mean anything by them and I hope I don't offend you. This is a learning lesson for me also. Remember I was trying to decide whether it take your path or the one I'm on. Like you I always recheck my decisions due to our conversations. Yes what my family went through was very hard. I remember my sister at the end. She had just had a radiology treatment to her brain and I really think that was what did her in. I remember going back to her bedroom and her laying there. When I went to take her hand she tried to speak to me but couldn't. She mouthed the words that I couldn't quite catch. I did a quick prayer and told her to be at peace. It wasn't until hours later that I realized she said "I want to go home." She had had enough of the pain and didn't want to be on this side of heaven any longer. It was within that month of her radiation treatment that she died. It's sometimes hard to let go and I know that people around us that love us can actually make it so we don't. I have seen that many times, more than I would have liked. I let my sister know that it was okay and I was okay with letting her go. I think that's the hardest part on people that are left behind. How does someone say it's okay go and allow them to die? Sorry I'm getting a little philosophical here but I'll never forget that moment of time with my sister in the bedroom. 😭

Life stinks and I know that while you're in heaven I'll still be down here struggling with this crap. That's why I think your decision it's just as wise a decision is mine for personal reasons that each of us has. Perhaps we'll meet on the other side. Big {{hug}}

Pat

claoh

Hope you had a good nights sleep when you got to bed. I just got up after our last conversation.

I did read the article you sent. Like you, I felt it was a wonderful advancement that is being researched. So many different vaccines.

knowing I will live on in heaven is a big part of my decision. Cancer is not part of God's decision or creation, but due to sin this world is suffering because of mankind's decisions. If you have definitely put your faith in Christ's sacrifice, we will surely meet each other in heaven - in perfect bodies!!!

His peace is what I'm holding on to during this. I was in turmoil when trying to decide between chemo/radiation or not. I found peace when I finally made up my mind to forego treatment.

Just asked my primary doctor to send a referral for the palliative doctor this past Friday. Hope she does so, and I plan to call to see if they have access to my mri and pet scan reports through our hospital system. Prayers that they will give me a conference session would be appreciated. I do have an appt with a palliative doctor in another town about an hour and a half away in mid July, but would like the option of getting a closer one if possible. Choices are nice also to see which doctor I connect with better.

Sadiej

https://csn.cancer.org/discussion/comment/1706616#Comment_1706616

Hi Claoh

After a week of ignoring it, then researching it, then deciding did it really was time for me to start talking to people again LOL. So you would be the first person that I really wanted to reach out to and hope you're not upset it my absence for the last week. I've got my chemo worked out which will start on the 10th of July. She's giving me a chemo that will be easy on my body and a regimen that will be 2 weeks on one week off repeatedly for six sessions. I also have to see the brain doctor the following day to set up surgery for the metastases he found in the brain. It's very very tiny, about a 64th of an inch, so I'm assuming he's going to be going in with a gamma knife even though I don't like the face mask that they put on you cuz I am so dang claustrophobic lol.

How are you doing? I thought of you everyday and was hoping that you found someone in palliative care to help take care of you during this time. I really feel for you and it's hard to even think of what you're about to go through. I wish there was a way that none of this would have ever happened to either one of us but is my mom always said, "if wishes were horses biggers would ride". I guess that's true in this case too and I will have to learn as I worked on it this week to accept where I'm at and allow myself to cry once in awhile. I had a one day cry last week added into all the other stuff of hiding and pretending nothing was going on and trying to deal with new information etc.

Anyway let me know how it's going for you sweetie. I hope this finds you in a comfortable and peaceful spot.

I also hope that anybody that has this in the future will be able to see our hopes and dreams and fears and I hope that somehow this will help them through this just like you and I have each other's friendship. God bless.

Pat

claoh

Hye Sadiej, so good to hear from you again. I was a bit concerned when you just dropped off and hoped it wasn't because of something serious with your health. Not that cancer isn't serious!!!!!! Glad you have your regimen in order and hope the surgery on brain is smooth sailing.

I'm still in same place with palliative care. Called my General Practice doctor for the third time only to find out they hadn't sent the referral yet! Hopefully, they got that going after our phone conversation.

I'm still in the same place as far as my condition. Only need 200 mg of Advil once or twice a day for a nagging ache in breast area. I'm just in the baby stage of this process.

Sadiej

Hi Claoh!

Man it's hard to take with ET LOL. Much easier is in text to talk. Took me about three tries to rate your greeting.

I'm glad you're so low on your pain levels. I've got some serious medicine from my palliative care doctor to help with mine. Yesterday was hard. My arm has been swollen up from the start and yesterday it was so swollen up it felt like my arm was broken. Much better today and I will take that as a positive sign. I have an ultrasound coming up for my thyroid. They saw something on my pet scan for my thyroid and my sternum. They haven't said much about any sternum tests but they seem to be concerned with the thyroid. I'm starting to feel like a lab rat by the way LOL. You got a bazillion labs and doctor's appointments and of course my chemo. I was supposed to have surgery on my thumb on the 7th but I seem to be having issues with healing. I had my last couple chemo toenails taken off (from previous chemo) on June 16th and they still haven't healed up properly. I got some antibiotics last week through my primary care doctor to help. I wrote my doctor concerning the upcoming surgery and told him that my ability to heal seems to have gotten lost in the shuffle LOL. We'll see what he says.

Sorry about dropping off. I should have told you I just needed a chance to run away for a week. Sometimes it gets really overwhelming and then just need to shut down for a while. I think next time that happens I'll make sure to send you a note telling you I'm taking a sanity break. 🤣

They really need to get moving on your palliative care. I found it a long time ago that you are your best advocate and you may just want to find a different route to get to your care. It seems that sometimes doctors and others don't understand the seriousness of our condition and that it's not something to sit on. I remember many times when I first started out on this one telling people "hey look, this is a very rare and a very aggressive cancer. I don't want to fool around. I need this done." Perhaps you will need to do the same to get the care that you are entitled to. People just think that it's like any other breast cancer and it's not. You deserve all the help you can get both palliatively and emotionally. That's one of the reasons I joined the support group although I can see it's basically just the two of us LOL. I'd hate to think that I would have to take a break about the time you needed someone to talk to the most. Very hard to get people to understand.

claoh

Glad your arm is better. It's so sad to read that your concerns keep growing. I find that a lot on this website. It can be quite discouraging and one of the reasons I said "Once and done". Along those lines, I don't feel I am encouraging you near as much as you are me. I don't have the experiences to know what you are going through.

Even through all your pain and suffering, you remain a very upbeat person and that is refreshing and so outstanding.

I have scheduled one out of state family visit each month for the next four months. Have no idea when I will really start feeling the effects of this and become more home/community bound. Hope it's a good while.

Sadiej

Hey ya know, if your family visits are anywhere near Pennsylvania...

Just kidding. I wouldn't put that kind of pressure on you. I'm not sure sometimes if I'm encouraging or Debbie Downer. I try to keep some of this as light as possible; it helps to outweigh the seriousness of it. I am so grateful that you don't have any issues coming into it like I have. Although the good news is my oncologist is being very careful with me because of the damage that was done from before. She picked chemos that were much easier on the body and I am on a 2 weeks on 1 week off schedule the rest of it, the brain tumor. the thyroid tumor and the sternum tumor are what I consider just cleaning up the mess LOL. I truly believe that I've gone to the best place I could because I really don't think any other place would have actually taken the time to find out these things that I have. So then there's that LOL.

I am truly grateful that yours is easy on you. We both know what mtnbc is all about and I am grateful, truly grateful for you. Not that you have it obviously but that so far it has been very gentle with you.

Isn't it funny, when you look back on your life all the craziness from being hippie teenagers with exactly three televisions stations to where we are at today. There's a lot of things I don't like that's going on today and sometimes I wonder if it isn't better just to go and let him have at it. Like I said I'm doing this for my husband and for my daughter. Both of them are who I consider my best friends. Sometimes I just plain get tired but I'll keep walking it through. Same as you, this was given to us whether we wanted it or not and we both are strong enough to make it to our goals. I'm very proud of you. You are very strong and in that I find encouragement and strength. Thank you for being a friend. ♥️

claoh

Hi Sadiej, no family in PA : (

Just sent a possible itinerary to visit brothers. Will see what they have to say.

Got an interesting appointment notification today for a phycological evaluation at the same time I have my appt with the palliative doctor. Don't know if they think I'm out of my mind for choosing no treatment or it was a mistake. Plan to go to palliative appt. and see what develops. May be interesting. : )

It has changed my thinking and made it much more evident as to what is important with my time. Really do cherish the future knowing it is limited. Right now planning monthly long distance visits to family and close friends is a big priority.

Sadiej

Hi Claoh

So glad that you're looking forward to being with your family and close friends. They should make a great support team for you.

I found this article on the Verywell website that may enlighten you on various symptoms. Even though they're looking at it from an oncologist side, I think you will be able to glean some good information off of this so you know what you're looking for in case you need it:

symptoms of metastatic breast cancer:

https://www.verywellhealth.com/common-symptoms-of-metastatic-breast-cancer-4154709

I have always believed in staying informed myself. I thought this was a pretty good site to explain what to look for in the metastases. I hope it helps you.

Perhaps the psychological doctor's appointment might have to do with the depression as shown in this article. I know before I see my palliative care doctor I have to fill out a questionnaire that asked me how I'm feeling.

Please let me know how your palliative care doctor meeting went. I pray that he will take care of you through this entire thing. Towards the end you also might want to be looking at hospice care. It may relieve the strain on your husband for your care, but heck what do I know? This is my first time through it too.

Thank you for walking through this with me,

Pat