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Topic: Pain from Latissimus Dorsi Flap Surgery

Forum: Pain — Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Jun 3, 2012 05:33PM - edited Jun 3, 2012 05:41PM by Lisa58

Lisa58 wrote:

Hello,

I would like to correspond with someone who has lived the nightmare of chronic pain after this type of reconstructive surgery. 

I had a complete mastectomy 12/14/10 and have been living a horrible nightmare.  There is not enough space or emotional energy to provide all of the details here, but I will provide a few deails...I developed a seroma and was adhesed to my rib cage.  This required a second surgery on 5/9/11.  After 15 months of physical therapy, an active stretching program, pain medications, a swimming program with PT, acupuncture, craniosacral therapy, massage, and more, I continue to have unrelenting pain.  Neurontin has caused tinnitus.  I am now using Lidoderm patches.  I may never be able to return to the active lifestyle that I enjoyed previous to all of this.  I have returned to work part-time, but that took 9 months to accomplish.  There is more!  I want to connect with other survivors who have endured!!!  I am excited to be on this website!

Thank you!

 LisaCB

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Feb 18, 2016 11:27PM nash wrote:

JoAnn, do you think a compounded cream with a muscle relaxant, anti-inflammatory drug and an analgesic might help? I've tried two different compounded creams, both of which unfortunately gave me rashes, but they did help with the muscle spasms and tight fascia.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 19, 2016 12:38PM JO-5 wrote:

Nash,

To be truthful I am afraid to try anything else. The only thing I have been able to put on my skin for pain and not get a rash is Aspercreme, and I can't have that on the scar because it burns.

I have to keep the graft in the chest and the donor site on my leg moist and it has taken me a long time to find anything that doesn't irritate those sites. I am using extra virgin organic coconut oil and once in a while Eucerin lotion. Everything else caused that area to get very red and sore, with my leg even bleeding.

Right now I'm struggling with digestive issues from trying to take Vit C, hoping it would speed up healing.

I am trying a probiotic and so far so good, but a long way from the digestive issues being resolved.

So perhaps from all that, you can understand my reluctance to try anything new or different.

I know exercise is important, but what does a person do when just being up a short while causes back pain so bad that eyou have to sit down?

However, I am thankful for so much. I am certainly better than I was 3 or 4 months ago. I've been sleeping in bed since September instead of the recliner, but still cannot sleep on either side...just on my back. I am able to do laundry and clean with the help of my husband. I can not lift more than a couple pounds, can't stretch much because of the graft, but at least I'm doing SOMETHING!

Thank you for the suggestion, I'just not going to try anything else. I'm tired of spending huge amounts of money on stuff that doesn't work.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 19, 2016 05:18PM nash wrote:

I totally understand, Joanne. I'm so sorry the spasms go on and on. They are miserable.

But on a positive note, that's wonderful that you are better than 3-4 months ago. As caca as I feel, I do stop and look back to how I felt six or seven months ago and go, wow, I have made progress since then. So that's something, albeit a painfully slow something. I remember how hard it was for you to even lie down flat before.

Continued hugs and prayers.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 24, 2016 07:52PM JO-5 wrote:

QUESTION PLEASE,

I am 8 months out from the lat flap. My back scar has started to be even more painful, especially at the bottom tip of the scar and swollen.

The scar itself is numb but hurts.....Does that make any sense at all?

That whole side of my back is sore and in spasm. Sometimes it feels like an electric shock that almost takes my breath, and when it is not doing that it is a constant burning pain.

I am allergic to any kind of menthol rub, i even tried Blue Emu that you see advertised. I got sooo sick, THEN read the label and looked up ingredients that I didn't know what they are....It had sulfur in it. I am very allergic to sulfur !

Massage does NOT help. It just makes it hurt more.

I'm not even addressing the pain from the graft in my chest since no one else has that so I know you can't help with that.

What do you all fo for the pain....besides percocet, etc. Can't take that either.

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 25, 2016 01:21PM ronqt1 wrote:

Jo-5: Hi, just read your post. I deconstructed and also have the mound from the LD Flap. It is almost a month since the implant was removed and I absolutely am tortured by the armpit. I cannot even put something close to my skin where the implant was. I feel for you because my ribs are sore as well. My stitches came through the other day and I had to have my PS cut them. I find difficulty putting my arm down with the loaf too. It is all insane. He also said there is nothing left I can do. BS.

I hope to start PT with the Lymphadema girls in April. So Jo and Gypsin I feel for you. I really do. It is up to me if I want to reconstruct but at this point not even thinking about it. Love to all.

Ronna

Dx 10/9/2009, IDC, <1cm, Grade 1, ER+/PR+, HER2- Hormonal Therapy 10/30/2009 Femara (letrozole) Surgery 10/30/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/10/2010 Reconstruction (right) Surgery 8/2/2011 Reconstruction (right): Nipple reconstruction Surgery 10/3/2012 Reconstruction (right) Surgery 12/1/2012 Reconstruction (right) Surgery 2/25/2013 Reconstruction (right) Surgery 7/15/2013 Reconstruction (right) Surgery 11/20/2013 Reconstruction (right) Surgery 6/13/2014 Reconstruction (right) Surgery 9/10/2014 Reconstruction (right): Latissimus dorsi flap
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Feb 25, 2016 07:39PM nash wrote:

JoAnn and ronqt1, I'm so sorry you have such troubles with the loaf. Ronqt1, I hope the lymphedema PT gives you some relief.

JoAnn, is the pain with the scar always a burning one? Do you ever just have tightness and pulling? Or is it always pain?

You've probably already tried this, but in case you haven't....the gentlest thing I can think of for the back spasms is a simple exercise my PT gave me. It is just crossing one's arms across one's chest and gently leaning side to side.

My back scar pulls in a specific spot. My PT can see and feel it. I have started aggressive rib remobilization and a technique called the Graston Technique, which uses metal tools to mobilize scar and tight fascia. Sounds worse that it is. I also started some more orthopedically based PT exercises. Those things combined with a new compounded cream (which gives me a rash in two of the three spots tried, so I only use it in one spot and only once a day, not 3x as rx), are propelling me forward after a four month plateau at PT.

Massage made things worse for me too, but I wonder if some sort of scar release technique would help you.

I can't use any sort of rub with menthol either. I'm also allergic to sulfer. The last time I used a menthol based rub, I developed a rash which my onc deemed "impressive".

Percocet actually makes me feel worse. I am not taking anything orally right now.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 26, 2016 06:16PM JO-5 wrote:

Ronna,

The loaf under my arm, since the lat flap in June, has gone down about half, but is still larger than most say they theirs is to start with. It doesn't hurt like it did, but does sting and is very uncomfortable. I find that putting some compression over it once in a while helps.

The mound that is part of the muscle from my back takes spells where it hurts and it feels like the breast is still there and hurting. Sometimes it hurts up in my shoulder. My ribs on that side are extremely sore and tender. The chest bones in the center are sore and achy.

Nash,

On my back the scar is not always a burning pain. Sometimes it is an ache. I almost welcome the times it is just a tight pulling sensation because of the relief from the pain. It is always one of the three.

Today the area between the scar and my spine is very swollen. I'm using the tens on it now. I can not use it the way I've told you before with the electrodes in an X pattern, because it hurt the scar really bad.

I have two electrodes on my lower back - one on each side of the spine. The other two, there is one on the rop of the swollen area and one on the bottom.....with nothing touching or going through the scar.

My whole body aches some days. I know they roll you, turn you back and forth, etc. and basically put your body through torture during a lat flap, and my body is still sore.

Having said all that....it was done to save my life, so if I never have a recurrence I can put up with this someway somehow, and be thankful for it.

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 27, 2016 03:49AM TAI_1967 wrote:

Hello,

Just to share on my experience. In July 2015, had my mastectomy and followed by immediate reconstruction with LD Flap. It's already coming to 8 months post surgery and I still have significant tightness at my back. Need to stretch my arms every hour. Am experiencing aching pains on and off until to my collarbone, shoulder and armpit. Can't sleep comfortably on my side too

The loaf has lessened since beginning but it's still there. Not comfortable and I have to wear bras without wires. My BS told me to give it another 6 months.

Looking back, I think I would not have gone ahead with the LD Flap if I had known all these discomfort, especially the perpetual tightness at the back.

This is just my sharing.


Regards,

Rachel

Tai_Rachel Surgery 7/9/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 7/10/2015, IDC, Right, 5cm, Grade 2, 3/14 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 8/4/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Feb 27, 2016 09:38AM JO-5 wrote:

Thanks for sharing Rachel.

It is helpful for those of us that are having a lot of problems from the lat flap, to know we are not the only ones....to compare problems and possible treatment, as well as how to cope.

I am so happy and thankful for all the ladies that have sailed through this with minimal problems, but sometimes their glowing praises for the proceedure are a little hard to take.

No disrespect to them and again....so happy for them. This thread serves a purpose for those of us that have not done so well.

Thanks again for sharing.

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 21, 2016 10:34AM ronqt1 wrote:

Sorry I have been away. Since I had my implant removed, I am still having problems although started PT. Constant, nonstop annoyce and uncomfortablesness and pain. Never would I recommend the LD Flap. Yes I am happy for the gals who have sailed through this easy.

Nash, Jo, and Tai, I have started with the exercises with the manipulation even in the house, doesn't seem to work. I still cannot put my arm again my ribs on right side. However, when wearing a constricted bra, it gives comfort.

Love to all, continuing with my nightmare. I see PS ironically tomorrow, my nipple and skin is still there. He will want to know if I want my implant back. Don't know.

Dx 10/9/2009, IDC, <1cm, Grade 1, ER+/PR+, HER2- Hormonal Therapy 10/30/2009 Femara (letrozole) Surgery 10/30/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/10/2010 Reconstruction (right) Surgery 8/2/2011 Reconstruction (right): Nipple reconstruction Surgery 10/3/2012 Reconstruction (right) Surgery 12/1/2012 Reconstruction (right) Surgery 2/25/2013 Reconstruction (right) Surgery 7/15/2013 Reconstruction (right) Surgery 11/20/2013 Reconstruction (right) Surgery 6/13/2014 Reconstruction (right) Surgery 9/10/2014 Reconstruction (right): Latissimus dorsi flap
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Mar 21, 2016 02:49PM nash wrote:

ronqt1, I'm so sorry to hear you still feel so crappy. The whole lat flap aftermath ordeal is so frustrating. Good luck with the PS tomorrow.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 21, 2016 10:46PM JO-5 wrote:

ronqt1,

I will be interested in hearing what your PS says. I forget....do you still have the "loaf"and if so is it getting smaller and does it hurt?

Hi there Nash, Still hanging in?

This is all such a roller coaster. I never know in a day which is going to hurt worse -back, loaf, graft.....

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 22, 2016 03:57PM nash wrote:

Hi, Joanne. Yes, still hanging in. Last week was a good week, this week not so much. So frustrating. Like you said, it's a roller coaster. Or chasing a moving target.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 22, 2016 06:00PM JO-5 wrote:

I had a good first part of the day.....really planned a lot to do.....felt better than I had in a while....then about 3 PM, everything started to hurt.

I've cut my anti inflammatory in half because of stomach issues...might have to step it up a 1/4.

Question, Nash...or anyone that wants to chime in ..Sometimes (not always) do your ribs, mostly in the back, hurt if you cough? It is right where the bra band is.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 22, 2016 08:58PM nash wrote:

Joanne, I don't get pain in the ribs in the back. My main complaint is tightness and pulling on the ribs, like I'm being poked in the back with a stick or have a rope tied around me. But I wouldn't be surprised if your muscles and ribs where you are describing the pain are hurting you when you cough.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2016 07:31AM CTLMom wrote:

Hi ladies,

I looked over many of the posts on pain following LD flap recon and wanted to share my story not only to show support but also to see if anyone has had this particular problem. This is my history which I have posted on other threads.

"I was first diagnosed in 2007 and had L side mastectomy. No lymph nodes involved but because of tumor size I had 4 rounds of AC. A little over 5 years later in Jan 2013 had a very small recurrence in chest wall. No chemo but I did have radiation after the surgery. Fast forward to summer of 2014 I was really noticing that the left implant was changing shape. At the same time my mom was diagnosed with stage 4 Non-Hodgkin's lymphoma so while she was going through her treatment I was to busy and worried about her to deal with my own issues. She went into remission and then was re-diagnosed in May of last year. While trying to help my parents with all of my moms medical issues I ended up in the hospital at the end of June with cellulitis on the same left side. After 5 days in the hospital I went home and the infection cleared up. I met with the PS (my original one retired) and he explained that because of the radiation the choices for reconstruction revision are now very limited. During the fall my mom went through quite extensive treatment and is doing much better which now allows me to take care of my own issues. After my most recent visit to PS I was told I have a stage 4 capsular contracture."

I had surgery March 2nd. Three weeks later I was back in the hospital for an infection at two spots on my my new breast flap. Suture knots were the source. Gladly they infection cleared! I am scheduled to start PT on 5/10 (earliest date I could get in with the breast reconstruction specialist). I have good range of motion and can function fairly well in the morning and early afternoon although I do feel constant tightness in my back/side. Rib pain is pretty bad as the day continues and by the end of the day I am in agony. Last week I noticed a lump under my shoulder blade. When I saw my PS last Friday I told him it feels like a bone sticking out. He looked at it and felt it and said "You're exactly right, It is your rib sticking out." He said the muscles are extremely tight and will/should relax over time. I am praying that the PT can help!! One of the surgeons that was present during my surgery told me that when my PS cut the radiated skin on my "breast" it snapped back so fast that they were taken back by it. Followed by, "You must have been really uncomfortable." I felt like saying No Kidding!! I was also told that my rib pain on my side is from radiation damage. Also, still having shooting pains where I have radiated tissue in the front.

I have very little pain medication left and hate asking for more. Docs seem so paranoid about them now especially in my state. I only use one or two tablets a week when I absolutely can't stand the pain. Otherwise I use Tylenol and once in a while Ibuprofen (It really burns my stomach.) and muscle relaxers. I honestly did not expect that would feel like this 8 weeks after surgery. Sorry for the long rant but I want to let people know they are not alone.

Thanks for being here,

Lorene

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May 9, 2016 04:42PM JO-5 wrote:

I haven't posted for a while, mostly because I do not have any answers for anyone.

I have a new pain, and just don't understand it.

Some of you know that I did not have reconstructiom. I do have the mound on my chest from the lat flap. Lately any use of that arm, like reaching out to close the car door, or something similar to putting my palm flat on a table and pushing down causes that flap to flex.......never did before, and it is very painful.

That mound has never been really painful, in fact it is still a bit numb. This pain is new, and only when that mound is flexed.

I am 11 months out from the lat flap, 9 months since the surgical debridemrnt and skin graft for the part that failed in the center of my chest.

I know that my situation is different than everyone else's on here, so you may not have a clue what I'm talking about.......but........

Any thoughts?

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jun 28, 2016 09:42PM shannonlee66 wrote:

First, as I said on another post, it makes very sad and mad to hear from so many women suffering from lat flaps. My heart goes out to each of you.

My story, briefly:

I was diagnosed Stage I in left breast and underwent bilateral mastectomy and lat flap reconstruction direct to implants three years ago. Since that time, I have been in chronic pain. I've seen a rolfer (love her!), who recently told me it's time to look into holistic pain management. I saw three physical therapists. The last one really helped me by manually stretching my pec muscles. It hurt, but loosened up the muscles under my back and chest. She also focused on stretching before strengthening. Massage therapy does help me, but it only lasts a day. 'Rolling" (I use an actual rolling pin) up and down my muscles does help a lot. The tens unit helps occasionally. I'm learning to be very mindful of how I move in everyday life.

I want you to know there are many women suffering longterm effects from flaps, lat and trams. You are not alone.

And Joanne, I'm wondering why you had a lat flap if you didn't have reconstruction?


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Jun 28, 2016 10:06PM JO-5 wrote:

shannonlee

In 2014 I had secondary angiosarcoma from the radiation treatment in 04. I had a wide excision. In 2015 I had it the second time, with another wide excision and the margins were clear but small.

I chose to have a mastectomy and the lat flap was my ONLY choice because they had to have an un interrupted blood supply.

My flap was larger than most because the BS took so much tissue and skin trying to get as much radiated skin and tissue as possible.

I was not interested in reconstruction, because I do not heal well, and I did not want to take the chance of the cancer hiding under an implants, and wanted the least amount of surgery as possible.

As it turned out, I made the right decision as about a 3rd of the flap failed. I ended up with a split skin skin graft in the center of my chest, no fat graft because they did not think it would take.

The skin graft will be 1 year in August and is still not completely healed. It will take another year according to my PS. It and what is left of the flap hurts but not as bad as it did.

I can certainly relate to the pain and misery. I have spasms in my back by the spine, lower back pain because the healing lat is pulling my spine out of line, which is in turn causing knee and leg pain. I use massage, tens, and heat and am unable to tolerate pain meds.

That's why I did not have reconstruction. Not having a "breast" there does not bother me in the least. It's the PAIN!

Joanne



Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jun 29, 2016 05:32PM shannonlee66 wrote:

Hmmmm. I was not aware that lat flaps were used for anything but reconstruction. I'm guessing you had a hole in your chest from the excision and that's why the flap was performed?I

I agree about the pain! I had my implants removed in March in hopes it would help, so I'm flat. If I'd known my body would react like this, I might not have had any kind of reconstruction.

I haven't looked back through all of the posts. Have you seen an osteopath?


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Jun 29, 2016 08:51PM JO-5 wrote:

shannonlee,

I told the BS to get as much radiated skin and tissue as possible and he said that was his plan.

He and the PS had worked together for over 30 years and the PS told me that he was really surprised by how much was removed and at first he thought he would not be able to close my back without a skin graft.

So yes, it must have been a big hole, but the main reason for a lat flap instead of some other kind was because of the blood supply.

If part of the lat flap failed on me imagine what some other kind would have done!

So now I have that mound where the breast was and a hole, (they call it a divot) but when it is the size you could lay an egg in, it is a hole in the center of my chest.

I don't expect to ever be pain free. I am thankful to be alive and hope and pray the pain gets better.

No, I have not seen an Osteopath. I did see a breast cancet LE therapist for a while but that was not any help. She tried myofascial massage once on my back.....it was too soon after surgery....and I don't want to go through that again. I was sick for weeks afterwards.

My case is very different. Only 1/2 of one percent get secondary angiosarcoma from radiation. Very few have any muscle and skin go necrotic after a lat flap. I am very sensitive to meds, and allergic to many.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Nov 16, 2016 02:44PM - edited Nov 16, 2016 02:48PM by JO-5

I am wondering if any of you ladies got a flu shot this year and got a sore throat and stuffy nose?

I was also put on Tricor for cholesterol the same day.

Dr has taken me off the Tricor until the throat gets better. I am supposed to try it again later and see if it happens again.

I am aware that the flu shot does not give you the flu but onne rare se is sore throat.

Both the Tricor and Flu shot can cause these se's. Some of you may remember how sensitive I am to meds..

Just wondering if there are any of you that had a reaction to the flu shot.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Nov 28, 2016 01:11PM CTLMom wrote:

Sadly I'm posting on this thread once again. My story is posted a little way back on 5/4/16 on this same thread. This week it will be 9 months since my lat flap reconstruction. I hoped that by now I would be getting back to a more normal way of life. In the past few months I have developed a painful shoulder problem and painful muscle spasms and stabbing pains underneath the reconstructed "breast". I am still going to PT. I was making advancement for a while until this shoulder issue started. Now I'm barely doing any exercises when I go. My visits are largely just deep tissue massage/manipulation, work to break up scar tissue, and trying to get my scapula to not stick out! Instead of moving forward I feel like I've gone backwards. It is impacting every aspect of my life. Fortunately I work in my home office so that at times when I am in a lot of pain I can stop or take my work upstairs and do it while having my back on a heating pad. (Never thought a heating paid would become one of my best friends) My husband wants me to go back to my PS and I agree except for the fact that I don't even know what to ask him. The last time I was there he looked and said everything looked great. It may look fine but it certainly doesn't feel fine!! I have a breast MRI this weekend (yearly one) and I'm dreading having to lay in that position! If anyone has any ideas about what I should explain to him or ask him to do it would be helpful. This whole thing is becoming overwhelming...

SickTired

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Nov 29, 2016 09:24PM - edited Nov 29, 2016 09:24PM by nash

CTLmom, I'm now 18 1/2 months out and still nowhere near normal. But I have gone from crushing iron corset/trouble breathing to "just" feeling like I have a bra on. Things are much more tolerable than they were.

The things that have helped me the most are:

--Grason method for scar tissue and soft tissue work

--therapeutic endermologie (for myofascial release)

--cupping (also for MFR)

--acupuncture

--trigger point injections (done by pain clinic)

The MFR and TPI have had the biggest impact for me. I found that until the muscles and fascia were released via aggressive means/drugs, the PT exercises, and even some of the deep tissue work, were useless and often times aggrevated the tightness and spasms.

I also just switched from trying Advil, which didn't help, to Aleve. The different class of NSAIDseems to work a lot better for me.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 15, 2017 09:49PM JO-5 wrote:

Hi,

I haven't been here for a while but I have a question I've not seen on here yet.

I am 1yr 8 months out from my lat flap (no reconstruction) I still have spasms in the muscle along side my spine and at the bottom of my scar. Sometimes the pain is bearable but often I HAVE TO SIT DOWN because it is so bad. I'm still not able to be on my feet more than an hour because of the back pain

Here is my question..Do any of you have truncal Le on the lat flap side. That whole side of my abdomen on that side is bigger than the left side. Also, my belly button is no longer in the center of my body but is about 2 inches to the right.

I am well aquainted with MLD and LE exercise and it really does not do much good. The belly button issue does not hurt...just looks odd.

Just interested in knowing if any of you have these problems.

Thanks,

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 16, 2017 10:49AM JO-5 wrote:

bump

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 17, 2017 11:41AM nash wrote:

Hi, Jo--yes, I have truncal LE from the lat flap. It's confined to the area around the back scar and to the ribs underneath the foob. It was more widespread earlier on. I'm at 21 months out now.

LE massage by my LE gal helps the back. Nothing helps the ribs in the front. I sometimes wear a compression tank (just a Maidenform shaper tank from Target).

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 18, 2017 08:00PM JO-5 wrote:

Thanks Nash,

Sorry you are still having problems, but glad to know I'm not being a big baby about it. I'm 18 months and the graft in the chest makes everything worse.

You are right.....nothing helps the LE in the ribs.

Nothing helps the pain and spasms in the back either.

I'm thinking about getting a shaper tank....so I'll take a look at the Maidenform at Target. I can't stand anything too tight so would you suggest a size up?

Thanks

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 18, 2017 10:10PM nash wrote:

Jo, yes, try a size up or two up on the shaper tank. You want it snug enough so you get the benefit from the compression, but you don't want it to fit tight.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 18, 2017 10:56PM JO-5 wrote:

Nash

Thank you. I will go up 2 sizes I think. If allowed I will try them on.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.

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