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Topic: Looking for your long term issues w bmx without recon

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: May 15, 2017 11:10AM

EpicSquirrel wrote:

I am still in the early steps (MRI today) as I was diagnosed last week. But I'm a planner, and thinking about pros and cons of possible treatments helps me.

I want to consider bmx if it is an option for me. I would not be doing reconstruction (I'm pretty flat shaped and have been all my life) My husband agrees that it's my choice but thinks I am underestimating the possible complications of mastectomy and I would regret it later.

Heres what I'm looking for: Honest experiences with the recovery and, especially, LONG TERM COMPLICATIONS of bmx without recon.

I'm not looking for the emotional as much as the physical. What are the long terms physical effects I need to weigh. Please tell me how long ago was your surgery, and please share any experience and how you feel about mobility, pain, nerve damage, lymph issues, etc.

And also if you had bmx and a recurrence, how long after?

I'm 49 years old.

History of fibrocystic and dense breasts (pain, cysts, aspirations, biopsies). 1.4 cm IDC at age 49 after "benign" flare up earlier this year (2017) Healthy lifestyle, no genetic mutations. Sometimes it is just bad luck. Dx 5/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 15, 2017 01:19PM ravzari wrote:

Recovery for me was pretty easy; I just had two drains that were out in a week.

The worst part was dealing with lack of range of motion for almost 8 weeks (can't really lift your arms above your head) and having to wear a compression vest for 4 weeks; my PS ordered 4 weeks, but it wasn't comfortable for me to sleep without it for closer to 8. Ugh, and back sleeping; it can be uncomfortable to sleep on your sides for a couple of months, and I'm a side sleeper, so I definitely didn't like the 8 weeks of back sleeping. I managed, but I sure didn't like it.

I can't say I've had any long term complications. My surgery was at the end of June 2016. I still have some semi-numb areas on my chest, but nothing totally numb. I can feel cold, heat, pressure, and touch, but some areas are less sensitive to pain (so, like, scratching the area I can't feel the scratch as much). The numbness doesn't seem to be in the skin so much as in the tissue underneath it, which is a kind of strange feeling that's hard to describe. It's not bothersome though; I can still feel where shirts touch my chest and things like that.
I only ever really notice it when I'm doing chest centered weight lifting or if I flex my pecs as it feels almost like the tissue above the muscle is 'asleep' (no pins and needles, I'm just aware that it's kind of numb).

The numbness or partial numbness can be a problem for some women if their chest was a big erogenous zone for them; for me it never was as I had chronic, severe pain from fibrocystic breasts, so it's not a problem for me to be kind of numb on my chest. For other women, the lessened sensation may be a bigger deal.

My mobility and range of motion was back to pre-surgery levels around 6-7 weeks. For about 6 months after surgery I had 'zingers' that felt like zaps of electricity in the area, which was just nerves reconnecting. Those stopped after about the 6 month mark.

I didn't have any lymph node removal, save for the lymph nodes that are in breast tissue, and haven't had any issues with lymphedema.

I didn't really have much pain unless I accidentally tugged the drain tubes or tried to reach too far above my head before my body was ready. After leaving the outpatient recovery room (they had me stay overnight), I didn't need painkillers beyond regular Tyelnol. Even then, the pain was more itchiness on the incision line (from the dang stitches mostly!) and a general 'ache' where my breasts used to be. Wearing a compression vest (I got a gynecomastia post op vest from Underworks) helped a lot.

In all honesty, for me, recovering from a BMX was WORLDS easier than recovering from an ovarian cyst removal that I had done in 2015; that one was brutal for me and everything hurt for a good 5 months. I couldn't even stand up straight for almost 4 weeks after that cyst removal and with the BMX I was out taking walks the day after I got home--even if they were in a bulky shirt to hold the drains.

Comparably the incisions were smaller (3" on my left lower abdomen, 2" on my right), but they cut through muscle to get at the cysts and it was just an awful, awful recovery for me whereas the BMX recovery was super easy and pretty painless, likely because no muscles had to be cut away or through.

Prophylactic BMX no recon, June 2016, due to strong family history of BC.
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May 15, 2017 01:36PM Momine wrote:

The tightness took a long time to subside for me. I had some mild lymphedema, but a good PT beat it back. I did wear a sleeve for about a year, and for a few more years when lifting weights. At first I was completely numb, including in the armpit where they took nodes. But feeling has returned, very slowly. I am almost 6 years out and have few lasting effects, other than having to be mindful of lymphedema flare- ups

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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May 15, 2017 03:27PM mustlovepoodles wrote:

My recovery was complicated. I developed a massive area of necrosis (tissue death) which looked like a wolf took a big gnashing bite out of my right chest. The left side developed a 6" seroma. I ended up having to pack the seroma with iodoform tape twice a day for 15 weeks. I also had a wound vac on the right side for about 7 weeks, followed by an additional 9 weeks of dressings. It took a total of 16 weeks to completely heal and my scars are impressive. I've been mutilated. I can hardly even look at myself in the mirror.

The only other issue I've had is the skin adhering to the chest wall. I had cording from my right chest and ribcage to my right wrist--you could see it from across the room. Thankfully, I had a massage therapist who was trained in myofascial release. She was amazing. Once a week she gently stretched the muscles to release the tightness. It took about 8-10 weeks, but she got it taken care of.

At this point, I wear prostheses. The are big and heavy, but they look totally natural with clothes on. I am happy with the prostheses for now, but I am not going to stay flat much longer. I'm very unhappy with the way I look (my doctor left a lot of lumpy, folded skin, along with all the scarring.) I'm hoping to start the recon process later this summer. But for the moment I will continue to wear my prostheses proudly.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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May 15, 2017 07:03PM GeorgiaRai wrote:

I'm almost 5 years post-BMX, and my early days/weeks are much as ravzari described. I had arranged to take 4 to 6 weeks off work (paralegal) but went back after 3. I had internal stitches with surgical glue, and healed without any trouble; drains were both out within a week.

The internal itching (best way I can think to describe it) was irritating - you feel it itching, but when you scratch or rub it, it's numb & you get no relief! I learned from others here to scratch my back instead, and that worked for me until the numbness faded.

I still have occasional aches & stiffness on the side that had cancer, but nothing that causes me trouble. BS wanted to remove a suspicious lump on the non-cancer side, so I just went full BMX. The non-cancer side actually needed more surgery due to a silicone implant that burst during surgery, but I never had any zings, stiffness or pain on the non-cancer side.

I wear silicon prosthetics every day, because I find them comfortable and they make me feel like myself again. Bras don't hurt me, but it did take me a few tries to figure out what worked best.

Best of luck to you, EpicSquirrel!

"You're braver than you believe, stronger than you seem, and smarter than you think" ~ Christopher Robin Dx 11/21/2011, ILC, 6cm+, Stage IIIA, Grade 1, 8/8 nodes, ER+/PR+, HER2- Chemotherapy 1/16/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/27/2012 Mastectomy: Left, Right Radiation Therapy 8/9/2012 Breast, Lymph nodes Hormonal Therapy 11/14/2012
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May 15, 2017 07:52PM Kiks1 wrote:

I was 49 as well when I had my bmx. It has been a year and a half since the surgery. Drains were taken out 10 days after surgery but I did not take painkillers once I got home. I was hospitalized for a day and really cannot remember any pain whatsoever. The drains were annoying but doable. Out walking the next day but it was winter and I was able to put on a big coat. I had some tightness that lasted a few months but I don't even remember when it faded. I did develop cording on my arm but PT took care of that in 3 sessions. I had full range of motion within 2 months. More numbness at the beginning, like everyone else but nothing significant or worrisome. I still have some spots with numbness but does not bother me at all. Like Georgia, I had that phantom itching and scratching my back gave me relief. That, also, dissipated. I am, however. still learning how to fit in clothes better as I realized that even though I was a small b cup before, it does make a difference. Seems like your ribs and stomach stick out more because of the flatness on top. Yes, I do look better with my breasts but not enough for me to consider reconstruction.

Dx 11/30/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/17/2015 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/5/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/6/2016 Aromasin (exemestane)
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May 15, 2017 08:01PM secondchancetoo wrote:

I have had two mastectomies approximately 4 and 1/2 years apart. The first one I had immediate reconstruction with a tissue expander. That one was not really uncomfortable.....except the tissue expander with Alloderm turned out to be a nightmare! Necrosis, swelling, infection etc. plus, an iron band feel that felt like I had a toolbox implanted in my chest. I had that removed, abandoned the idea of recon entirely and healed up within days. No issues with lymphadema or anything else.

My second mastectomy was after I developed a new cancer in my remaining breast and I knew that I wanted a mastectomy with no recon from the get go. No problems at all with surgery and recovery except a small stubborn Seroma that took about eight months to resolve. Overall, numbness was the thing that bothered me the most but that is very common and now most all of the residual numbness has passed. I never took any pain medications for either of my post op courses as I don't react well to them, but I found the pain levels to be minimal for maybe a week or two.

I go flat sometimes and at other times I use a lightweight prosthesis in regular bras that I sew pockets into. I don't care for the overly constructed mastectomy bras and heavy prosthetics that are currently available although they do look very good once you are all dressed.

Good luck with any choice that you make, it's good to go with your gut feeling....it won't let you down!

Dx 12/13/2011, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/1/2012 Mastectomy: Left Surgery 4/15/2016 Mastectomy: Right Dx 4/20/2016, IDC, Right, 1cm, Stage IB, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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May 16, 2017 02:55AM - edited May 16, 2017 02:55AM by Momine

I should add that one significant after effect of a BMX, with or without recon, is the loss of an erogenous zone. It may not seem so important when you are facing a cancer DX, but do keep it in mind. That said, with the return of the nerves in my chest, some of that has returned as well, but it is obviously not the same as it was.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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May 16, 2017 09:15PM EpicSquirrel wrote:

Thank you all for sharing these experiences. I know I can read about potential long term complications and see number etc. But the examples are very helpful to make it real

History of fibrocystic and dense breasts (pain, cysts, aspirations, biopsies). 1.4 cm IDC at age 49 after "benign" flare up earlier this year (2017) Healthy lifestyle, no genetic mutations. Sometimes it is just bad luck. Dx 5/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 16, 2017 09:28PM wrenn wrote:

I was shocked at how little pain there was. I had plain tylenol the first day only. Most are in and out the same day but I had to stay in hospital overnight because I have sleep apnea.

My complication was a surgeon who didn't attend to a large hematoma which affected one drain and became infected. I felt tight for months but now almost 4 years out there is no tightness.

I was not pleased to find out how big my stomach was. It was hidden under huge breasts. I don't miss them at all but am always aware of my protruding gut.

Drains are a nuisance but otherwise it is a fairly easy event for most I think. I was able to take care of things myself including bending to change cat litter box.

Best of luck to you.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 7, 2017 09:19PM Mimi2kleh wrote:

I'm must admit, I am jealous of all you women who had it pretty easy with not much pain. Mine is quite a different story. You can read it here: https://community.breastcancer.org/forum/8/topics/...

I think Epicsquirrel should know there are also a huge number of women who have a hard time, and also end up like me, with PMPS (Post Masctecomy Pain Syndrome). There are some threads on this site about this issue. I belong to a support group for this, with hundreds of women from all over the world, and none of us were told about this issue. No doctors, surgeons, nurses, medical staff, ever mentioned anything about it. And many have had a horrendous time afterwards, with doctors who don't believe them, and some don't know anything about it either. We live in daily pain, and are on daily pain meds, and have tried every type treatment possible, and there is no cure. The medical community is just getting around to acknowledging it, and realizing some of the things that cause it. But it should be something you should check into and learn about, if deciding on a MX. Some of us had no choice, but some wouldn't have had it if they had known. And, it can also happen with just a lumpectomy.

As far as living flat (you can read what surgeries I had done at the link I posted above), I am SO happy I didn't have reconstruction. It's easy not having "them" to deal with anymore. As others have said, I feel like I am all Stomach now, but I'm a fat! I threw out all tops and dresses that were built for boobs with darts. I wear mostly t-shirts, and peasant style tops, and they are fine.

Good luck to you, let us know your outcome. 🙏

Dx 10/2011, IDC, Right, 6cm+, Stage IIIA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 12/9/2011 Mastectomy: Right Chemotherapy 12/29/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/6/2012 Mastectomy: Left, Right Hormonal Therapy 7/21/2013 Arimidex (anastrozole) Dx 5/2017, IDC, Stage IV, metastasized to bone/other, ER+, HER2- Chemotherapy 5/18/2017 Xeloda (capecitabine)
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Jun 7, 2017 09:27PM wrenn wrote:

I forgot to add that I had axillary node disection (6 nodes) and I have not developed lymphedema (almost 4 years).

Also for a while when I would get in the shower I would stop thinking I hadn't removed my bra when I didn't have one on. There was discomfort or obvious sensation of very large breasts being gone but not pain.

Hope all goes well. I don't know of anyone in my groups who have had problems but things would vary depending on surgeon, after care, general health etc.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 7, 2017 10:53PM Bearhitch wrote:

So for me - over 3 years ago... really no physical complications at all. I do have a dog ear that I would like revised someday, but other than that - nothing. No lymph node removal and a heck of a lot less problems than what I have heard others mention with implants. They were never an option for me.

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Jun 8, 2017 12:19AM coraleliz wrote:

My BMX surgery last 2 hours. I feared pain but experienced very little. I overnighted in the hospital. I walked 4-5 miles each day until my drains came out at 1 week. I went on a 10 mile hike the day after that. I did feel discomfort but the pain meds didn't help & it was tolerable. I found walking & keeping busy was a great distraction. I don't remember exactly when I started running again. I purchased some loose fitting sports bras at Kmart because it was hard to get into one's my size. Two weeks out, I woke up with my right arm over my head. It took another 2-3 weeks to raise my left arm over my head. Even before I could raise my arms over my head, I found I could use dumbells(smaller than usual). I just had to keep my elbows close to my side.

I had some truncal edema for about 3 years but that seems to have resolved. Unless I wear a super soft t-shirt, I still need to wear a sports bra. Shirts can be uncomfortable when they rub against my chest. I don't use prostheses, just go flat.

I had some weird pains in my chest & arms for about 3 years. It is almost never a problem. My surgery was over 6 years ago.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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Jun 10, 2017 09:40AM EpicSquirrel wrote:

Thank you all for this great information! And Mimi wow your story is such an important one to hear, thank you for sharing all of that. I hope you are having some good days. It sounds like you have a lot of love around you.

I am STILL weighing this decision, whether to go back for bmx or go forward with only tamoxifen at this point. I had a very successful lumpectomy with no signs of spread, good 3mm+ margins, but radiation is still the recommended standard of care following even a successful lx and favorable prognosis like mine, mainly due to my age/premenopausal. I'm not comfortable with radiation, which is why I'm considering bmx.

I still have time to decide. My lumpectomy was 2 weeks ago and I reconfirmed that I have up to the eight week mark to decide before any option even rads would be "late". Genetic testing and oncotypeDx will give me more info as well. And I'm now seeing a psychologist to try to help with how stuck and obsessed/anxious I feel about all of this. (She suggested that hearing from women about their experience may be helpful)

Thank you again for the generosity of your experience and your wisdom, and best wishes to you all for as many happy days as can bepossible!

History of fibrocystic and dense breasts (pain, cysts, aspirations, biopsies). 1.4 cm IDC at age 49 after "benign" flare up earlier this year (2017) Healthy lifestyle, no genetic mutations. Sometimes it is just bad luck. Dx 5/5/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 5/25/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 10, 2017 10:52AM Momine wrote:

Epic, although I have not had a bad time from the BMX, in your shoes I would probably do the rads and move on. In most cases (with notable exceptions, per above), a BMX without recon is an 'easy' surgery. At the same time, it IS also major surgery. It is an amputation.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 10, 2017 11:01AM wrenn wrote:

I chose BMX to avoid radiation. No regrets.

I'm glad you are taking your time. Wish it wasn't a decision you were faced with. :

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 10, 2017 11:23AM Momine wrote:

Wrenn, point taken, and I am glad you are happy with your decision.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 11, 2017 07:07AM MamaOz wrote:

so momine,

how are you doing these days ? Did you do any PT /LT after surgery? I am so far 2 sessions my range of motion in right arm hard going some cords set in but dhes good at working them out I sm s bit concerned about possibility of lymphedema especially after radiation so I want to do all I can. I noticed you had had alot of nodes removed as well..

Any tips?

Mamaoz

Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Jun 11, 2017 11:14AM Momine wrote:

Mama, I did have some swelling during treatment, got PT ASAP and continued regular PT for almost a year. I am left with only a minor "blob" of swelling up by the armpit. The main thing is to be pro-active, i.e. get PT before the swelling goes nuts. Early stage lymphedema can be reversed. I did also wear a sleeve and glove the first year, and then for a while after when doing exercise and the like.

It is also important to do the exercises they give you. They seem a bit silly and like nothing exercises, but they do help.

Lastly, be aware. You will learn how your body responds. For example, I can lift weights at the gym, without a problem (small weights), but even 5 minutes with a small bag of groceries dangling from my hand will give me problems. In general though, movement is good. Even going for a walk. Lymph only moves around with the contraction of the muscles, so keeping active can help. Besides, being heavy raises your lymphedema risk, so exercise is your new BFF.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 11, 2017 08:52PM - edited Jun 11, 2017 08:56PM by MamaOz

thanks momine, that is helpful and hopeful!

It sounds like your doing well ..did uou have side effects from Femera? Are you still taking it?


Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Jun 12, 2017 03:14AM Momine wrote:

Mama, I had my ovaries out to put me in menopause, then went on femara. It means I was plunged into menopause+ sort of overnight. It was rough the first months, but it is hard to say what was caused by the ooph, what was femara and what was after-effects of chemo etc. Eventually it settled down. My main SEs at this point are pain in the joints of my feet and occasional sleep troubles. The joint pain fades with movement and exercise also helps with the sleep problems. It can be annoying, but it is not anything too dreadful.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 12, 2017 07:09AM MamaOz wrote:

thanks Momine, always inspirational

🌺😊

Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Aug 2, 2017 10:41AM Maomaonie wrote:

Hi EpicSquirrel,

what have you chosen, bmx or lumpectomy ? Are you going to have radiation therapy?

I have just diagnosed. IDC, stage I, minimum 2.5 mm. DCIS. And ADH lesion span of 3.7 cm. ER+/PR+/HER-. I am evaluating lumpectomy + radiation verses mastectomy.


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Aug 8, 2017 08:12AM - edited Aug 8, 2017 08:24AM by MamaOz

well girls I am going for my radiation test run today and start rads tomorrow..did any of you have a plastic thing placed on your chest during rads? I cant remember what its called beloise or something apparently when you have no breasts or recon its needed to help spread radiation over skin

Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Aug 8, 2017 10:28AM ksusan wrote:

Bolus. Yes, at times.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 11, 2017 06:24AM MamaOz wrote:

ksusan, you said at times? Please explain?

they plan to use on me every time.. i am very small 5' and 98 lbs and the bolus comes down to my navel and across my whole chest( i had no recon)

I have read that when used alternate days women fared better. The ones who had it on every time burned badly and had to delay treatment to heal ....so far today will be my 4th treatment and I see dr. Today I want to insist they alternate days


Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Aug 11, 2017 11:14AM wallycat wrote:

I was dx a month before turning 50 (as my tag line shows). I had the lumpectomy first (doc insisted) and a month or two later, went for the BMX. It is 10-1/2 years and the only thing I miss is the sensation/sexual gifts my breasts offered me. As others have posted, when facing cancer vs. sex, the concern becomes living---seeing past that at the time is difficult. I was a D cup. I thought I would be demoralized by losing my breasts (and I'm not saying there aren't days I have a mental pity-party) but not getting stared at walking down the hall anymore---priceless!

My breast surgeon had a minor melt down when he came to see me the following day (required overnight hospital stay) because the pain cart was in the hallway. Totally freaked, he ranted at a nurse and was about to have it wheeled in when I told him.."do I HAVE to use that if there's no pain?" He was quite perplexed. I think 8 months into the journey, I recall taking 1 tylenol at work because everyone harped on me to "get ahead of the pain"....pain I never had so when I felt a slight "tight" feeling, I thought this was it. Nope. 10-1/2 years later and still no pain. My range of motion was affected with the SNB after the lumpectomy, which returned. The BMX was nothing. I was back to doing yoga backbends fairly quickly. I'm grateful that I still have not had any lymphedema. I understand that can occur anywhere from right away to decades down the road. I think cording is normal and I also had a great PT, though she said the cords would work out on their own. Not painful, just weird looking/feeling.

Best to you on your journey and decision.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Aug 11, 2017 12:25PM Momine wrote:

Mamaoz, I had a bolus every time, but not for the entire treatment. I had one small spot of burning that was painful the last week or so. I also developed large blisters at the end, which was quite nasty. I sprung for those expensive gel plasters and that cleared it up in a few days. All in all not fun, but the recovery was faster than I had expected. The lingering tiredness was worse than the burns.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 12, 2017 06:33PM MamaOz wrote:

Thanks momine, i was told my bolus is neccesary and if i start to get badly burned they will not use. My actual treatment is 7 min. Oh well I'm hoping they know best..

And wallycat its always a joy to hear from women who are doing well many years out , I see you took arimdix how was that

I was a nice B cup but now just use a little fluff in a soft packet #2 I pulled most of the stuffing out! And insert in my coobie bras it gives just enough shape like maybe A and its quite comfy



Mamaoz : chemo 1/.17-4/17 AC/.paxitacil : 3/29 nodes Dx 12/5/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 3/29 nodes, ER+/PR+, HER2- Surgery 5/19/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/30/2017 Hormonal Therapy Arimidex (anastrozole)
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Aug 12, 2017 09:07PM Lisey wrote:

The issues I had after surgery were more related to the TEs I had put in, Once those were removed weeks after, I felt so much better.. I did have 'iron bra' for about 6 weeks until I had specialty PT that worked on adhesions and tight muscles. She did some incredible work on me and after about 6 sessions with her I had full range of motion and felt wonderful. My nerves took about 10 weeks to heal - It felt like a nasty sunburn, especially with the seat belt. The nerves and my sternum feel normal again now. Honestly, I'm 1 year out - flat and fabulous and I have absolutely NO side effects or issues with my flat chest and BMX. The only issue (other than healing initially) was the first surgeon left skin in case I changed my mind. I would highly suggest you reinforce you want to be boy flat and find photos to show them what you want. I had to have an additional surgery this spring to get rid of the extra skin he left. I am now perfectly flat with nice flat scars so I'm very happy.

My list of positives is huge - even compared with when I had huge natural boobs. I love the clothing choices, the freedom to just put on a light airy top and go, the lack of boob sweat, I feel thinner and more like I have a dancers body now. I think I look better in dresses too without the huge boobs - which aged me. And finally, I won't have anything hiding under implants or tissue if I get a recurrence I'll notice it quickly and be able to jump. So many reasons I love being flat. Best of luck in your research and decision!

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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