TRIPLE POSITIVE GROUP

LaughingGull

Hi ladies,

Thanks again to all for chiming in re my lumpectomy vs mastectomy dilemma. I was just reading that famous post by Beesie. One point she mentions is that you need to know the risk of your cancer returning under both options, and I don't really have that. It doesn't sound like my oncologist or my surgeon, who are giving me conflicting advice, have the story straight for my type of cancer and stage, and they are giving me a recommendation based on how they think I will feel, or the generic approach.

On Monday morning at 9am I will go for a second opinion at a major cancer center. Hopefully they will answer all my questions.

Welcome root. Sorry for your diagnosis. I just completed chemo, first Adriamycin+Cytoxan (4 times, every 2 weeks) and then Taxotere+Herceptin+Perjeta (4 times, every 3 weeks) and I am making decisions about surgery (my plan was neoadjuvant chemo first, then surgery); I cannot really tell about your treatment, but I wish you best for your surgery and the chemo. And I second your decision of going for a second opinion.

LaughingGull

SpecialK

hap - this study was designed to take women straight out of treatment, for me it was right after chemo, and I had already had five breast cancer related surgeries - I had one expander and one prosthetic due to my removed expander on the left, still wearing a wig and receiving Herceptin. The way this study was implemented was to learn about relaxation and focus techniques to assist in the immediate aftermath of the acute (surgery and chemo) phase. Formal meditation where you have eyes closed and are quiet and focused was taught, but information meditation was also taught which is more about emptying the mind of extraneous thoughts and concentrating on whatever you are doing at that precise moment. Formal meditation is pretty self-explanatory, but I found more value in the informal - instead of cluttering the mind with a million things, to really try and just do one thing at a time - kind of the opposite of multi-tasking. It helps to de-stress and calm. The biggest takeaway I got was also that I really have very little control - there is no point in regretting the past because you can't change it, and no controlling the future beyond what the choices you make bring you, I only have the current moment I am in. If I am constantly in a state of worry about either the past or future I am wasting my current moment - it sounds so simple, but is harder to put into practice than one would think. Because I needed many more surgeries, although I wasn't aware of that at the time I did this study, I found what I learned to be essential in proceeding through a lot of bad news and challenges that came afterward.

Magari

Mindfulness: My nurse navigator directed me to these podcasts (accessible to all; you need not be a Kaiser member): https://healthy.kaiserpermanente.org/health/care/!ut/p/a0/FchBDoMgEADAt_iAzYZEYfFmhH6hhdsGiZIIGELt99seZ9DjC33hO-3cUy18_uxCLD22md9bqnCnLVZ8okd_Nd4zoysVAocj_o9bT-GM6IzVap2MBamlBCGsgEWPBohoUkKp8UErXjnTZxmGL2IKPpI!/

These particular podcasts turned out not to be my thing, but others may find them useful. There are many mindfulness apps for smartphones; here is an NCBI/NIH study evaluating them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705029/

I printed out the following quote and posted it at my desk at work: "If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it's not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever." - Dalai Lama

I find it a good reminder, which of course applies to things one is stressing out about in a workplace environment. But also to other aspects of life, including health issues.

coachvicky

Laughing ...

What is this, please:

I was just reading that famous post by Beesie.

Vicky

SpecialK

coach:

check ruthbru's post on Jan 2, 11:51 for Beesie's post about lumpectomy versus mastectomy:

https://community.breastcancer.org/forum/91/topics/851551?page=1#post_4874453

kae_md99

elaine,

we are both on zoladex and AI.. have you ever considered removing your ovaries to get off zoladex? i give it to myself every month and also did you ever have your estrogen measured? what level should it be if the ovarian suppression iw working? thanks

ElaineTherese

Hi Kae!

Yes, I have considered an oopherectomy, but my OB/GYN isn't wild about removing ovaries if there's nothing really wrong with them (no cysts, not painful, etc.). We've been talking about going on a month-long Zoladex/AI break to measure my estradiol levels (to see whether I'm post-menopausal), but I haven't gotten around to it. (Spring is always a crazy semester, but this year it's crazier than ever with a new university president, a new college dean, a new departmental chair, and a new office manager, who I've been breaking in.) After chemo, my estradiol levels were a mess; no one could make much sense of them. My OB/GYN speculated that my ovaries could already be fried, but I did get my period through AC. (It stopped during Taxol.) I'm OK with the Zoladex + AI because the hospital is 10 minutes from my office.

LTWJ

HapB, our local public library has classes on Mindfulness, see if yours does. It’s a nice place to sit quietly and practice this. Ours has some basic yoga and this at the same time in the library.

We in TX are going from 83 high today to 45 high tomorrow. I’m going to light the fire too

kae_md99

thanks elaine! well i have endometriosis and i certainly dont want kids anymore.lol.. my onco did suggest it as an option. will see my gyne at the end of the month and see what she thinks. my Mo thinks that at age 50 ( when i finish OS and AI) i wont be menopausal yet.

Suburbs

Roots, welcome and sorry you are here. Ask your MO and your surgeon to get together and discuss your plan together. What you describe is crazy. They should be on the same page. I am surprised you are not getting chemo first. Was this discussed.It's often recommended with early BC and triple positive with a tumor over 2 cm. SpecialK is the expert here on standards of care. Perhaps she can weigh in. You are asking the right questions. I hope your treatment plan gets settled soon and that you can be comfortable with your decisions. All the best.

coachvicky

SpecialK

Thank you for the link. WOW. What a post!

Vicky

coachvicky

Welcome, Roots.

Suburbs is spot on ... SpecialK knows the standard of care and I hope she will reply to your post.

As for a timeline, my BMX was 12 July and I started chemo 14 August. My diagnosis was in early June of the same year.

I would think your surgeon would have to "release" you to start chemo but I don't know the protocols for where you are being treated.

Coach Vicky

SpecialK

roots - responded on your other thread

deni1661

Roots, sorry you have to be here but welcome. I agree with the others, your entire medical team should be on the same page. My surgeon didn't release me to resume Herceptin and Perjeta infusions until I had at least a month to recover. Surgery takes a lot out of your body and starting chemo too soon doesn't sound good to me but I'm not an expert. I would seek out a second opinion.

Best wishes for finding the answers you need and please know that we are always here for support.

deni1661

Suburbs I'm happy you're making progress in the right direction! I will continue to pray that you have complete healing very soon.

Baby steps on the shoulder rehab but I'm happy with the progress so far. Thanks for asking

Tresjoli2

roots welcome to the group and sorry you have to be with us!

coachvicky

Today is my husband's birthday. When all this began I did not know how many birthdays I would have to share with him.

Cancer has made each day a gift to embrace and each celebration one to be grateful for.

The things I once took for granted I no longer do.

Oh how I wish I could have learned these lessons an easier way.

Vicky

Blownaway

someone was posting about watery eyes/herceptin...when I showed my onco's PA (never saw my onco after he found out the study he wanted me in was not funded) my watering eyes, she said your eyes are actually dry and are watering due to the dryness. Never figured that one out...

Mindfullness??? What mind? I left mine at the infusion center 4 years ago

SpecialK

When your eyes are dry, from whatever source, the lacrimal glands may respond by producing a surfeit of tears which overwhelms the normal eye draining system, thus the eyes are watering even though they are dry.

coachvicky

Blownaway

My Optometrist "plugged" a tear duct in each eye. The first ones were permanent and they kept coming out. The ones in now slowly dissolve and will be replaced every 5 or so months. It didn't hurt and is an easy office procedure. I think these have helped me with my dry eyes.

My insurance referral reads for "Keratoconjunctivitis Sicca Not Sjogren Bila." What a mouthful!

Vicky

astyanax66

Hi--and welcome to the new folks. Sorry you have to be here, but of the communities I'm on, this one is good for talking!

Just had hubby shave my head. He did a pretty good job! There are a few uneven spots, but nothing too bothersome. I'm wearing a cotton cap. Chemo starts Tuesday. Our problem is the whole family got bronchitis. I'm well on the mend (finished antibiotics, no fever, just a bit of clear sniffles--and the pollen here is awful, so I think that's the culprit).

I was on an SSRI around 2004-6 (Zoloft), and it worked well for what I needed--and I titrated off slowly without any real issues. The oncologist mentioned using Cymbalta to combat side effects from AI (won't start for a while), especially bone pain. I'm not thrilled, but I don't have many options since I can't take Gabapentin or Lyrica. So, I'm just going to wait and see when the time comes. I have spinal stenosis and had 2 cervical spine surgeries before age 48; hence, my concern about bone pain.

Hope you have a good week,

dee

PoseyGirl

I took an antidepressant for about 7 months. I believe they are critical for people at certain points. But when I wanted to wean off, my MO told me 15 days!!! Well, being naive, I followed that. It was awful...I had the worst dizziness. So, a slow weaning off is critical..

astyanax66

Thanks, will do!

Suburbs

Thankful for Prozac everyday. I waited months and finally knew I needed help. I was warned thoroughly about side effects and long-term consequences. I think cancer patients benefit greatly from anti-depressants.

Homemadesalsa

For me, exercise is my anti-depressant. I am addicted, and when I am too ill to exercise- that's when the shadows get darker. But we are all different and different things work for each of us.

Cowgirl13

I hope that those of you who are thinking you may need an antidepressant will not be scared by this article. My beef with the article is that they did not report which antidepressants have a known hard discontinuation. Not all of these drugs have this side effect. The deal is the discontinuation taper. A psychiatrist would generally know more about this.

For me, these drugs gave me my life back and I will always be on them. Without them I would rather be dead. Seriously. When I started taking one years ago, I did wonder if there were side effects and did they really know what the long term ramifications were. I was in such bad shape that I made the decision I had to go on these, regardless of the drug profile.

And I have a happy life and I look forward to the future. It does get better, much much better.

ElaineTherese

Cowgirl,

I'm with you on this one. Some psychotropic drugs are easy to quit; others are not. My son was diagnosed with depression and anxiety in 2014, and we have had to try a range of different drugs to see what worked for him (he has autism and isn't very verbal). Fortunately, he has a great psychiatrist who has helped him get on and off a number of drugs without too many side effects. It helps if you're working with a psychiatrist rather than just a GP or whatever.

Suburbs

There is nothing short term about treatments for triple positives. I had never taken antidepressants until cancer. It's good to be informed, but, for everyone here who is in the midst of treatment or still dealing with the side effects and aftermath, please don't be afraid to raise your hand and speak to your care team.

Good doctors are well-informed. In my humble opinion, some medical oncologists are very familiar with the crippling effects of cancer and its impact on quality of life as well as healing. Some suffer from the same malady.

There is no shame in asking for help. Please, especially newbies to the list, be your own best advocate. When you need help, you will feel it and I encourage you to seek it.

PoseyGirl

Hi Hapb,

With all due respect, we need to appreciate that each person is different in terms of how they cope. The idea of whether or not it is worth it Is up to each of us as individuals. For instance, I was seriously struggling, so took them for anxiety. A slower wean would have eliminated the side effects for me. But that aside, they were very helpful. We need to do what we need to do.

We are all “otherwise mentally healthy” until we’re not.

Juli24

Hap, perhaps you didn't take antidepressants because of your superior knowledge (I mean this only to point out that your comments seem to imply that you believe that fact). I have another side of this coin that should be considered. You didn't take antidepressants because you didn't need them. What also should be considered, and furthermore respected, is that some cancer patients do need them and they can make the difference between misery and the ability to cope with a situation no one should have to face.

Hap, I mean absolutely no disrespect to your opinions. I am really glad that I have been Around long enough to realize how many of your opinions skew. What I fear is that a newly diagnosed Triple POsitive patient will come on these boards, read one of these non-medically trained op Ed's and in their state of fear and shock believe the opinion is absolute fact. Hap I hope you will at least take this into consideration rather than immediately blasting me for what is only my opinion