May 2018 Surgery Support Group
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I am so glad everyone is checking in. I have been wondering how it has been going with our group.
I am still not anywhere near my usual self and/or usual schedule and it has been a long, discouraging time. The severe tightness in my chest has been hard to contend with. I started seeing a Myofascial Release Therapist twice a week in Nov and I think we are making progress, but it is slow and I am impatient. The entirety of my scars are keloid and I originally didn't understand that could indicate severe internal scar tissue as well.
As another side note, I have had way more Dr visits than I would like with low energy and a couple other symptoms and blood tests keep finding issues - severely low vitamin D and then severely low Vitamin B and now an iron anomaly.
On the positive side, my husband has been downright amazing and my close family and friends have been understanding, encouraging and full of prayers.
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SPD--sorry to hear you are struggling. I understand the about the tightness. i thought getting my "real foobs" would be the end of that feeling. But alas it is not. I am finally sleeping in my own bed. It has taken months. Actually you could count on one hand the number of times I slept in my own bed since my first surgery. It is different and I'm not sure about it yet.
I feel discouraged at times when I remember how I was not a druggy. I now take all sorts of meds and before my diagnoses I didn't take anything.
I was low on Vit D. I read a few articles about it. One of them pointed out the taking a daily dose will not help. It said you needed to take a lot of it over a long period of time to get it up. I took 5 5000mg pills for about a month, Now I take 3 5000. this seems to be the right amount for me. I just had my blood work done yesterday and see my GP next Tuesday. I'll be curious how everything goes. I also see my oncologist the same day in the afternoon.
So glad your hubby is amazing. So is mine. Thank heavens.
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Kandyhunt - I am sorry to hear about all you have been through with the surgeries, strep and more!
Thank you for the info on the Vitamin D. I started out taking 5000/day and it just wasn't getting my numbers boosted very quickly. Dr moved me up to 6000/day and my numbers have gotten worse!
I am still in the recliner for sleeping. I have tried the bed several times and just have not been successful.
As a side note - I have a had a dark red rash come on suddenly outlining my entire incision area. It was super itchy to begin with, but now mostly just visually disturbing. Have any of you had anything like that?
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hi ladies-
Been thinking of you all and I’m hopeful and thankful 2019 seems to be off to a better start for us all. Haven’t been on here much but realized we are nearing a year and wanted to check in. I’m feeling back to “normal” but I’ve been a tad paranoid that every ache and pain that comes up is something 🙄 that’s been stressful to get past but my dr reminded me I have been through this traumatic experience and it’s bound to make me more highstrung. A friend that went through all this at the same time as me is in hospice and that’s been heartbreaking. I’m also working with a local charity called Leslies Week which provides vacations and other events for stage four MBC women, I’m planning a big event in May so it’s been nice to help give back that way. Anyways, sending love and health to you all.
Ps-For those still struggling with issues my doctor first told me when it all started most woman take one full year to feel back to normal, whatever normal means- so hang tight!
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I'm glad we're all checking in on each other. Michi, so sorry about your friend on hospice. I do feel that I went through huge trauma last year, and of course, the New Me feels more vulnerable. My doctor is careful to discuss my New Normal, acknowledging, with compassion, that the old normal is no more. Glad to have this supportive site.
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interesting about the vitamin D. I have been taking 2000 mg, but I am finding it very hard to get it tested to seewhere I am at.
Hard to believe we are nearing a year, I too hope this year is better. A lot of firsts, my first mammo after the single mastectomy and ultrasound back where it was diagnosed.
I too lost a friend who was diagnosed at nearly the same time.
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Hi all! Just had the first anniversary of my diagnosis on April 5 and am remembering this time last year and the rush to go to appointments, settle things at work, and keep sane. After my exchange surgery in December I want through some pretty rough times emotionally. Lots of anger and anxiety. I think because things began to slow down, all the emotion of the past year hit me, and I began to grieve my former self, as well as fear who I am becoming. I will say I am moving to a better head space, but it'll take time. Sometimes it is literally one day at a time. I started yoga once a week, returned to my art table, and am set to go to England and France for nine days, then four days after returning home, head to Kauai for nine days in July. And dammit, I'm gonna have a blast!
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Chiming in on that cancer-versary of diagnosis and surgery feeling that you mention, sn75.... Enjoy the anticipation of those trips, and yes, have a blast!!!!
It's been a year since bad news and trauma of all sorts for all of us. Surgical and emotional trauma. I somehow got through last year one day at a time, digging deep, and concentrating on the only thing I could control: that one moment! Now I'm back to exercising, feeling pretty good (except for TERROR about recurrence), and moving on pretty well. I went through all you describe, sn75, and it still comes in waves. Daily exercise and engaging with the world in all ways is how I'm coping. I'm a hobby musician, playing piano with a cellist friend and singing in a chamber music group. Also planning a biking week in the San Juans with my friend; an annual tradition for us which we couldn't do last year.
My husband and I had 9 days in Kauai three weeks ago! It was lovely. I was strong enough to hike and snorkel, and we had a restorative, nice, healing time enjoying nature there.
Wishing you all continued healing in all ways.
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love that people are getting back to the land of the living! At least that feels like that for me! We just came back from Asia and I enjoyed it and had the stamina to cope. This year feels so much better than last!
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It is so great to hear how everyone is doing and it sounds like there are marvelous travels in store for many!
This past year has not been at all what I expected. The diagnosis was out of the blue, but not as traumatic as for me as I thought it would be. The BMX (my first surgery ever) went better than I could have hoped for. My numbers and not needing chemo or radiation was icing on the cake! I am so very grateful for all these things, but my recovery has been entirely opposite of what I envisioned. I did not have reconstruction mostly because I wanted to eliminate extra steps and further surgeries and the possibility of restriction and tightness in my trunk area was a big worry for me. I don't mind at all the way that I look (and my husband agrees which is even better!), but I have been riddled with tightness since surgery and my daily life is greatly effected. It feels like a bungee cord is wrapped around my chest or like I am wearing a tight, uncomfortable bra 24 hours a day. I have been regularly using physical therapy, chiropractics, acupuncture, creams/oils/ointments, ultrasound, cold laser, and myofascial release therapy (2x a week for 6 months now). I would say that on a tightness/uncomfortable scale, I have gone down from a 10 to a 7 in the past year and I am trying to decide how much longer to hold out that these methods will get me to a point of better daily functioning.
I had a consultation with a plastic surgeon this week. My gynecologist had recommended him as another pair of eyes to evaluate my incisions (which are keloid or hypertrophic - opinions are mixed) and I was having some kind of rash/reaction. My doctor was not advising any surgery, just his help on the scars. However, he has said that he feels my discomfort is a regular and expected discomfort from "going-flat" and that there will not be much further relief to be offered in general. He did say that they have some focused laser therapies that may help after a few months, but would increase the tightness in the short term. He did offer a flap surgery that I am very perplexed on. He called it a lattisimus flap surgery, but his verbal explanation was different than what I have been reading on the boards. He said it was removing tissue (but not muscle) from my back, clearing out all my internal and external scarring, putting the back tissue up front and giving space and slack where there isn't any. He is convinced this would entirely alleviate my issues and I am perplexed. It would be a major surgery and I would repeat recovery again with 4 drains, and now incisions in my chest and back. If it would truly take care of my daily tightness, I would do it in a heart-beat, but I am not convinced yet. So, I have been trying to analyze this new information.
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SPDGirl Thanks for sharing all that. I had no idea that going flat had its own discomforts. I have implants below my pecs, and there's a fair amount of discomfort mostly on my previously-radiated (2003) side. Some tightness at all times, and I'm 4 months past exchange surgery, so I think it's settled into how it will be. Sorry to hear that with all those therapeutic interventions, you're still uncomfortable.
I would be wary of this new PS's suggestion. It could be a starting point for gathering more information, but, you know that very famous saying, "surgeons like to cut." I'd get 2-3 opinions before making this huge decision. And, more opinions about how to solve the discomfort without surgery. Would it make sense to consult with a physiatrist? Trained as MD + also in PT stuff---kind of an interesting specialty.
My PT friend shared with me that after every flap surgery there's a long recovery, and ultimately some loss of strength, due to how the muscles are separated or moved or fibers are compromised. Whether lat or ab. On the other hand, people say that the LOOK (fat grafting can be part of this and it feels more natural than an implant) can be best with this type of surgery.
For the usual implant type, the implants are behind the pecs. Depending on skin thickness, there are also pre-pec (on top of pecs) implants, but I wasn't a candidate. My Tissue Expanders are set into a sewn-in pocket (made of Alloderm), behind the pec, and over the months of saline being added, the pecs and skin had to stretch. I found the pec stretching extremely uncomfortable, especially right side that had radiation in 2003. In fact, pecs usually lie flat against chest wall (original breasts are on top of them, not behind them), so they're unhappy at being made to stretch around a TE. You have skipped all that, and maybe at this point, the lat. flap. reconstruction really is the only way to solve your discomfort. But, I share your shock and awe at imagining that surgery is going to be a good solution. Surgery caused this problem!
I'd want to know: If you formed keloid tightening scars after BMX, wouldn't you again, with next surgeries? How long will you be recovering from such a surgery? What compromises to lat muscles will be necessary? What if this same tightening and scar challenge happens again? Will first incisions be re-used and excised? Are you a candidate for hyperbaric therapy to speed healing, and does that help with this type of scar tissue healing challenge? I'd want to discuss this exact repair with people who had it, or read their testimonials, or call someone up who's had it. I'd look for a PS who's successfully solved your exact issue, if there's to be any surgery.
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HikingLady - thank you for the thoughts and suggestions. I am trying to gather all the information that I can. I didn't anticipate any discomforts going flat, so this has been such a shock, although I cannot agree with the PS who has said that all that have gone flat have this issue.
Here on the boards is the only time I have heard of a Physiatrist. I have been complaining of this issue to all the health professionals that I see and then some and I have been hard pressed to find suggestions (with the exception of myofascial release which at least in theory really seems like it should be helping) and nobody has mentioned the Physiatrist route. I will need to see if there are any locally.
I am confused on why my body would not produce the same type of scaring/tightness issues with an additional surgery. My only thought was that I now have a Myofascial therapist in place and could start on those treatments relatively quickly after surgery as opposed to last time when I didn't start until 7 months out as I didn't even know this therapy existed. The PS basically said that in scar formation our body is designed to close our wounds quickly and in theory it is a good thing, but it does cause tightening, but that if there were more tissue to work with, the same tightening would be "looser" than what I have now...again I am skeptical.
He said that he would excise the current incision and utilize the flap to revise, but I am not sure what that means.
Hyperbaric treatment has never been mentioned to me, but I remember reading about it here in our group in the past. I am compiling all the questions that I don't have answers to so that I can become as informed as possible.
I am sorry to hear that you are still uncomfortable, but glad to hear about your recent trip with your husband. It sounds beautiful!
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Spdgirl, you are describing classic Post Mastectomy pain syndrome. I highly recommend you listen to the following podcast about it offered here on this website. It's unlikely that more extensive surgery would eliminate the pain. Dr. Springfield is a physiatrist and describes the cause ave treatment well. Also, if you're on Facebook, there is a very large group of women that share this syndrome and are very supportive.
Click on menu, then "Listen to our Podcasts"
Post-Mastectomy Pain Syndrome: What It Is and How It's TreatedMichael Stubblefield, M.D.
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Thank you for the heads up on the podcast, bcbc - it was super interesting. I so wish finding all the right people, treatments, etc was easier and quicker
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