Starting Chemo April 2020
Comments
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Kris.
No. No recon here. Very personal and difficult decision in one sense.
I made a mental checklist of why to recon and why not to recon and no matter how much i thought about it, talked to people, consulted with the surgeons, I kept ending up in the no recon column even though the the decision was very close and i am certain i would have had a very nice cosmetic outcome.
Main considerations for me were: I needed more time to consider the recon options. I was not happy with any of them. I did not want a long surgery at the same time of the mastectomy and subsequent staging and treatment. I did not feel I could deal with both the cancer and the recon at the same time. I felt I would be fine with an external prosthesis. I needed to see the incision and scar to let me know how strong I am and to help me heal emotionally and care deeply for myself. I am comfortable with myself as a unilateral woman and do not see breasts as required elements for my identity as female.
That is a very concise summary of such a difficult decision! The main thing is: follow your heart! Do what is right for YOU!
Allie
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Allie -
What a great project! As long as the yarn you use is a fingering weight, soft cotton or even a bamboo, it'll work perfectly and the magic loop is, IMHO, the only way to go
I've made a lot of the knitted knockers over the years, but never for myself. I think I might have to make some too. I've also made a T-shirt sweater for the summer because I'm thinking the stretchy T-shirts I normally wear aren't going to look very good this year. It fits perfectly. I'm attaching a picture.
If I didn't have knitting, I would go berserk between worrying about Covid, cancer, quarantine, a daughter on the front line, and the stupid news reports. I have to stop reading all of that stuff. I'm now working on a pair of Watermellon socks - cotton for the summer too.
Have fun!
Xoxo
Nan
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Kris -
I am in the same mindset as Allie. I’ve talked to so many people over the years since my first cancer. Mammography techs, nurses, oncologists, other people who’ve survived BC and for the most part, they’ve all said, do what feels right for you and what makes you feel most confident that you’ll live to old age. I felt it would be easier for me to monitor the “lump” situation if I didn’t have reconstruction. After 21 years of trying to check a breast full of cysts, with radiated tissue that felt like a donut, I’m glad just to have a scar there. And then there’s the OMG, I have a mammogram coming up, I wonder if this is the year they’ll find something annual scare. If something starts growing, please God, I’ll feel it quickly and have it removed.
As Allie said, Do what is right for you. Follow your heart. I’ll add, don’t rush to a decision and see if you can leave the door open for a later decision if you need more time. This is a difficult time to be making surgical decisions. Perhaps in a year, you’ll have a clearer picture, if you can get the BS to give you some options for later.
Nan
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Nan,
Your post is a JOY!
Thank you.
Your sweater is a WORK OF ART! That is master level knitter and beyond!
Cannot wait to see watermelon socks.
Blessings to you.
Allie
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Hey Allie,
Here you go
Nan
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Nan,
I adore them!
Too adorable!
Allie
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Katie - LOL it is hard to show any expression with the mask and the hat on. To top it off, I got Botox just before I was diagnosed so the only part of my face people can see is still partially paralyzed. Only me...
Jess - yes my chemo twin! I think we are similar in many ways. You have not had surgery yet, correct? I went straight to chemo and won't have surgery until probably late Sept. or early October then likely radiation. Thanks for the encouragement. I know this is only a pause on life right now and if anything a reminder to slow down and enjoy life!
Nan - I love the knitting. Growing up my Grandmother was always knitting and watching the Cubs simultaneously. I've tried many times to pick it up but always struggled. I still have some sweaters and hats that she knit for me.
Allie - good luck starting Taxol. I have found the SE very manageable. My biggest issue so far is that I had a reaction on my first infusion so I now get the infusion over 2 hours vs the standard 1. After they slowed it down, no reaction, and I haven't had one since.
Robin - hello fellow Floridian! I'm just down the road from you in Gainesville. Thanks for your question about swimming, I didn't even think about it. My family is considering a trip to Crystal River in a few weeks so I guess I should ask my MO about it.
Stay strong ladies!
Lise
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Nan and Allie -
Thank you for such honest responses about the reconstruction. I am also of the same mindset as you both - and really leaning in the direction of "no." I'm curious what information you can give me on how prosthetics work, if you have to have a special bra, how that works, etc. I have not explored that yet - just mostly thought about whether I want to go through reconstruction. For me, I definitely do NOT want more than one surgery. So if there is any chance that I'm facing radiation, then reconstruction is off the table as far as I'm concerned. My BMX will happen at the end of August. Even then I'm really not wanting to face a long recovery - which I would have if I do the reconstruction even at the same time. I have a grandson coming in September, and I want to be done and off enjoying being a grandma by the time he arrives. I'll be 55 in November, and have no "need" for my breasts - nor am I attached to them in any way. I've nursed all my babies and they have done their job as far as I'm concerned. My only thing is how clothes will fit - so hence the question about prosthetics. I'm already pretty small - barely a B cup, so I feel like it's all manageable.
Kris
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Nan! I love the watermelon socks!! SO CUTE!!! That made my morning : )
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Kris (and Nan, and Allie, and everyone else)-
I am considering reconstruction. After chemo, I will have a mastectomy of my right breast and lymph node removal, and I've already had an initial consult with my surgeon and with the plastic surgeon about my options. Although I don't feel like I philosophically or emotionally need to have breasts in order to still feel like myself, I am excited by the idea that I may be able to regain my shape and continue to run around the world as if cancer never stopped me. So at this point, I am planning for reconstruction! However, I've been talking to myself (haha) about being prepared for a change of plans if I can't do it for some reason or if I change my own mind... and I've also been imagining myself with the flat scar and feeling better about that each time. I think, for me, it's the imbalance of having one breast and one gone that is the hardest for me. If age matters (well, we all know it doesn't), I'm in my 40s but still feel young, so also that spirit is part of what makes me feel like my boobs (real or fake) still have a whole life ahead of them and, therefore, I'd like to do reconstruction and take them with me on many more adventures!
Also, I should add that I'm scared sh**less (sorry about the bad words!) about surgery overall because I've never had it (besides the minor surgery of the port placement) and, until cancer, I'd never even been in the hospital for anything, not even a broken bone or having a baby. But maybe the ignorance of not knowing how hard surgery will be is kind of a good thing. In other words, I personally can't process how hard the mastectomy w/recon will be, compared to w/o recon, so basically, if my doctor team thinks I can do it, I tend to feel brave and strong and like I can do it. So, I think I can do it! But will I change my mind...? Maybe? All of this is a journey and I've allowed myself to be open to surprises along the way.
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I'll join in on the reconstruction topic. My plan is to have reconstruction, I'm just not sure what type yet. I am actually meeting with my plastic surgeon tomorrow morning to discuss my options. I will have a unilateral (left side) mastectomy. Like Jess, I am in my early 40s but feel much younger. I really do not want to live the second half of my life without a breast. I"m in Florida and we can spend 10 months out of the year in the pool or at the beach.
I also have the added benefit of working for my plastic surgeon so I am exposed to his work (and 7 others) on a regular basis. I know myself well enough to know without reconstruction, I would be constantly reminded that I had breast cancer (not that we can actually forget). I feel that reconstruction will help me put this behind me and move forward with my life.
This is such a personal decision and I know no matter what we will all do what is best for ourselves.
Much love!
Lise
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Jess and Lise -
Those are all also such great reasons to have it! And Lise is right - it is such a personal decision. And one you just have to feel "right" about whichever way you go. I love that everyone is thinking about it SO personally to them and not just going with whatever the recommendation is. Same with the idea of doing a lumpectomy, a mastectomy only on one side, or doing both. I have no evidence of any disease in my left breast, but for me, I just want it ALL gone. I don't want to ever worry about breast tissue, or recurrence in the other breast, or mammograms, or anything else. And I also think my age and stage of life plays a part in that. If I were still in my early 40s, I imagine I would probably feel differently about it all.
Kris
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It's so great to hear everyone's take on surgery and reconstruction. I've read some stuff about the topic, but hearing real stories and thoughts from all of you is so much more helpful and interesting! You've all given me more to think about it and it's so reassuring to hear that we're all trying to figure out the right answer for ourselves, that it's not just an instant, obvious decision with one right answer.
I wish all BC patients could have the opportunity to talk it out with fellow fighters like this. And I really wish the COVID-19 pandemic hadn't halted all support groups and similar services. I would have loved to be able to talk with people in person and feel that level of support and camaraderie. In so many way, we've been shortchanged on our cancer journey and had things made more difficult because of the stupid pandemic. Sorry, I'm obviously still a little bitter about the pandemic and I didn't mean to be so negative... but it must've come up for a reason so I guess I needed to vent! Thank you for letting me! At least this is a place I can let it out, with people who understand what I mean. If I said this on Facebook, for example, people would think it's a pity party and I'd just get a lot of condolence messages.
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Kris.
Re prosthetics. I would see if your cancer center could recommend a good prosthetic fitter. There are SO many options these days. The advantage in consulting a pro first is you can learn what kind of prosthetic you might want and how it should fit, etc.
When I started looking around the internet on this subject, I learned that there are many more prosthetics and nice bras than "back in the day." But before I buy on the internet, I think I would like to have a professionsal fitting, especially if I am going to buy an expensive prosthesis and bras. I do know that insurance will pay for a certain number of both.
I made the mistake if buying a fake boob online before my mastectomy and it was just too depressing because it was not right for me and I felt like i had a cereal bowl on my chest to quote someone else...I have tried it since the mastectomy and I am still not happy with it.
I plan to look into other options such as wearing sports bras some of which have pockets in them for padding, sewing my own prosthetic pockets into conventionsl bras, the "knitted knockers," and having some fun in "re-wardrobing"myself for the new me!
Right now, I wear a very nice sports type bra without a prosthetic. I am small and if you study my chest, i look lopsided in a clingy top so i wear big shirts, etc.
Allie
UPDATE: Jess just saw your great post. So true what you say! Thank you!
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Hello ladies. Like so many have said its a very personal choice. My comment is seriously not to talk anyone out of their decision.
I had a bilateral mastectomy, only had tumors on left, and didn't want to chance it coming back in right. I was TOTALLY in favor and very comfortable and happy with my choice. I did reconstruction immediately. While I am very happy and like my results even though I've had 3 surgeries to get them how they are.
No matter what you decide, if you see a mental health professional PLEASE talk to them about it. Even though totally good and happy with my choice, I feel a loss that I can't get rid of. I have boobs, or as I call them foobles, but they aren't mine! That feeling won't go away. You have to remember to mourn the loss. For those with upcoming surgery please understand this is a big issue, many people I've spoken to that have had a mastectomy have said the same thing.
Whether you do a uni, bilat, recon, or not YOU are beautiful and your "girls"don't define you or your strength!!💗
I hope everyone is having a good day and keep up the fight to kick cancer's a$$!!🥊🥊
~Katie💗
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Hello Ladies...I’ve been reading your posts about reconstruction and figured I’d join in. First...Lise and Jess I’m in your AC-T backwards club and have taxol 10 tomorrow. I’ve managed really well and continue to work full time but I’m feeling the fatigue a bit.
When I initially met with the breast surgeon we talked about options. She talked about the trend to get rid of the breast or both versus a lumpectomy and talked to me about how that has to be your decision based on your anxiety and how you will best be able to move forward. She talked to me about how reconstruction isn’t the same as having a “boob job” by choice. The feeling isn’t there etc. My plan was to do a lumpectomy and move forward. Then we did genetic testing and found out I have the PALB2 gene mutation which raises my risk significantly for getting another breast cancer, slightly for ovarian cancer and slightly for pancreatic cancer so all the fun. Needless to say for me that’s a game changer and I will do a bilateral.
Jess...like you I have no kids at 49...a young fabulous 49😂. I had my tonsils out as a kid so surgery terrifies me. That being said I wish I could go flat and move on (although moving on I imagine will be easier said than done) but I think I would miss having breasts even though I know they will be different and foreign to me. When I met with the plastic we talked about doing direct to implant at the time of the mastectomy but of course some of whether that can happen is a game day decision. My plastic was very honest about the loss and depression I will probably feel after surgery. It’s so much to think about.
I agree that covid has complicated matters. It’s been great for me because I can work from home which usually isn’t an option but I miss the ability to participate in some support groups or do free yoga for breast cancer patients. I’m hoping over the next month or two as I finish this part I can think about it more and be ready to meet again with the BS and PS to talk about all options. Early on I was so overloaded with information I felt like I was swimming. I love that you all are sharing your choices and thoughts. It gives me a different perspective to consider.
I hope all of you are hanging in there and tolerating your side effects well. I’m hitting the point where I’m ready to be done😃.
Heather
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Heather — I’ll be holding your hand tomorrow. I’m doing Taxol and Herceptin. 🙏 all goes smoothly for both of us.
🌈
j
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Katie- Thanks for the suggestion about addressing the mastectomy and body changes with a therapist. That’s a great reminder and I can’t believe I hadn’t thought of it.
Heather- good to hear from you! And yay for getting to #10 of 12 Taxols... woohoo! I also appreciate your perspective on the surgery decisions. I also felt like I was swimming in too much info back then so, like you, I’m looking forward to rethinking it soon and having more conversations with my doctors.
Thinking of Heather and J at your infusions tomorrow, and anyone else who has treatment or appointments. Love to all
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All,
You have no idea how rich, intelligent, wise and thoughtful your posts are. Thank you.
Bless you all!
Allie
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Allie, Heather, Katie - thanks for all that information and your thoughts! Definitely all things to consider as I move forward. I do want to see someone who does prosthetics - I've asked my breast surgeon about it and they are getting me some names. I want to completely understand my options. I'm someone who wants ALL the information before I make a decision, and I want to the decision to be MINE.
Another plug here for our new Facebook group - we're having some good, lively discussion over there that doesn't require you to continuously scroll and remember what everyone said before you can respond. Please PM me with your email and FB name so we can add you!
Kris
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Kris.
Wonderful! Yes!
There is always time and there are always options!
We all need to feel free to explore in our own way. That's how i see it and i am more than ever looking forward to it.
I am feeling an unexpected strength and interest in moving forward - with life- for some reason. It is not a lot, but it is enough of an uptick that i am heartened.
All - continued blessings...
Allie
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Heather — how did #11 go today? Must feel go to only have one more until phase one is completed.
Day went well for me. Three down, nine to go. I’ll PM you.
🌈
j
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it went well today. They sometimes have trouble getting blood return from the port and when that happens they have to put something in it and let it sit from 30 min until 2 hours until it unclogs. It's happened twice. Once it cleared in 30 the other time it took almost 2 hours so we did taxol Iv. I'm always nervous until we get return which went fine today.
I know this has been discussed but I am having some acne. Just a pimple or two each cycle but when you look like a partially bald baby bird and have zits it sucks. I assume they are the steroids but the nurse today said they could be the taxol. I don't want to use anything I would normally do for a breakout because my ski is dry and I get flushed the day or two after taxol. Any ideas? I forgot to ask my MO.
Hope you are all doing well ❤️
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I’m a bit late to the party, but I’m loving all of this recon talk! I don’t think there’s one right answer, and I completely support every woman’s decision to do what’s right for her body!
Personally, COVID issues aside, I’m definitely planning on having a prophylactic bilateral mastectomy with reconstruction once I complete chemo. I don’t want to go through this again, so I’m cool with chopping the other breast along with the one that’s trying to kill me, but I’m 42 and I also want to be able to look in the mirror and feel more like myself, breasts and all. I can deal with the lack of feeling and the notion that they may not look “right,” Surgery does scare me as dos staying in a hospital where COVID patients are being treated; however, after surviving chemo and its effects, I feel like I can handle anything!
Again though, this is a PERSONAL choice, and every woman has to do what’s best for her!
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Les,
That's the key: we need to be true ourselves in making the decisions required. It's not easy. I want to think of the future as only open doors, no matter what.
Allie
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I, too, have enjoyed ready the reconstruction or not discussion. I joined a couple (okay, maybe more than a couple) of FB groups that have helped to inform me about the options out there:
DiepCJourney ~ Breast Reconstruction after Mastectomy
Flat & Fabulous
Fierce, Flat, Forward
Fabulously Flat
Breast Cancer Support - I Got This!
HER 2 Positive Breast Cancer Support and Awareness Group
Triple Positive Breast Cancer Her2 PR+ ER+
I love that for the most part, as our group is here, that others share openly and there is no judgement for making different choices. It really is very personal. There definitely is no “one size fits all” option.
My hubby and I were talking earlier this week and I could not convey adequately the sense of loss/grief that I/we go through in thinking about and choosing to have a mastectomy/mastectomies....no matter reconstruction or not...the girls will never be the same. And we each have to decide which option will meet our needs moving forward.
I am 46, will be 47 on the 15th, and, personally, I am leaning towards BMX with no reconstruction/flat closure. My hubby definitely supports it...his hope is that it would limit the number of surgeries and the risks that come with it and put me on the road to recovery sooner. It is just my mind fully accepting any of the options is where my struggle is.
Let’s keep the discussions rolling.....Erin
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Erin. You articulate your thoughts so well and they resonate with me, especially the part about identifying where the struggle is! Agian. will be different for each of us.
Allie
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Les and Erin- Thanks so much for contributing to the recon discussion! It really is so great to hear more points of view and it gives me more to think about. I didn’t even realize there are Facebook or other groups to follow or join for support, so that’s a nice bonus— thanks, Erin!
Heather- I don’t have the acne issue myself, but just wanted to say that I laughed out loud at the part about being a bald baby bird with zits!
Love all of our candidness (is that a word??), and humor, and support... love you all!
-jess0 -
Hello everyone. I had my final chemo today and rang the ceremonial bell. I wore my Friends-inspired customized shirt that my daughter got me for Mother's Day from a business in my hometown. The owner charged my daughter only $15 for the shirt and didn't trust the mail so she drove it to me on Tuesday so I'd have it for Friday (today). She told my daughter in a text that she lost her mother 10 years ago to cancer and she would give anything for her mom to be able to wear a shirt like this for her last day of her chemo so she wasn't about to take any chances with the mail. The drive was 3 hours each way. It brought tears to our eyes that she did this. Very special indeed. We gave her a thank you card with a special monetary gift that she wasn't willing to accept but we wouldn't take no for an answer. Talk about paying it forward!
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Sherri!
Oh my gosh! Many cogratilations and best wishes!
You look beautiful!
Allie
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