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Topic: Truncal Lymphedema - can it make ribs jut out/change shape?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Feb 6, 2019 02:31PM - edited Feb 6, 2019 02:45PM by blah333

blah333 wrote:

13-14 months ago I had mastectomy, no reconstruction, 2 nodes taken. I was 35. I had a slight bout of swelling 2.5 months (March) after surgery due to going on a long walk while wearing a backpack, but it resolved itself. It felt more like fluid.... 9 months after surgery (August) I was traveling and in a city getting ready for a long train ride so I carried some groceries and various things down several city blocks but was sure not to use my left arm/shoulder. Though at one point I did carry two bags using both hands. Swelling started in the area just beneath my armpit and would stay/fluctuate until the end of October. Because I only had DCIS and two nodes removed, nobody took/takes my issues seriously. I go to an educational hospital and the clinic is just newbie breast surgeons who barely know about cancer let alone lymphedema. The clinic was too busy and told me to "just go to urgent care" which I had already done because about 3 weeks after the start of swelling, I noticed that my top 3 ribs were jutting out, mostly on the center of my chest when the ribs really start to curve out from the sternum. I know not everyone is "symmetrical" but post-surgery, my rib shape/torso shape (not surgical results) was for all I could tell. Everything beneath the skin felt the same to me on both sides. When I feel the prophylactic side from my collar bone, I have soft muscle that slopes down to my ribs this is how it used to be on both sides. Now on left affected side I feel bone protruding, and could even see it through a shirt in a dressing room. The doctors don't notice or claim it's normal. I had an ultra sound done on Halloween and they saw no swelling/lymph fluid, although I have had a swollen node since March when they took US after my first bout of swelling.

I didn't get to see a PT until Jan 16th.... for swelling that took place in August-October. On that date I had no swelling so the PT was just being polite and showing me how to do lymph drainage but I didn't make a second appointment because it felt unnecessary or I guess I expected to magically remember everything I was shown. Jan 20, I was doing laundry and simply carrying a hamper from my car to the laundromat sparked another bout of swelling. Today I feel even more pressure on my ribs, and notice the overall shape of my ribcage on the left side is starting to look different. The 5th rib that angles more diagonally is more pronounced. I can look in the mirror and see my left side curves outward (it makes me think of a strawberry), whereas the opposite uneffected side is a fairly flat line if I run my hand from my armpit down the side of my torso.

I had to ask for another referral and my next PT appt isn't until March 12 (I am trying to move it).

Can lymphedema do this? It is like the swelling/pressure is on the inside vs. the outside of my body, although I do have some puffiness which sometimes feels like a squishy pad between my armpit and shoulderblade. I feel like I can also feel some of this on my back. It is making clothes feel a little uncomfortable although in the mirror I look the same "size."

I was also alarmed that I can feel another bone in my crotch area that I never felt before (noticed while leaning against a tall table at work), I think the pubic turbucle, which also seemed uneven (one sticking out more than another), perhaps my body has "tilted" due to swelling? I have also lost some weight, which may be why I'm feeling more things in my abdomen/lower areas but anyway I'm rambling.

But here is the thing......... because I have had a swollen node since the first imagery they did after my surgery (2-3 months after surgery) and it has not gone down in size at all, they wanted to do a biopsy. A doctor claimed there was cortical thickening and lack of a fatty hilum, but when I went to the Jan 7 biopsy, the US tech brought up my old images and said not much had actually changed, she just had provided more images. When they were doing the FNA, the hilum was visible. Unfortunately they fucked up and took samples of muscle so I have to do that all over again next week.

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SHORTER SUMMARY

Basically I've had intermittent swelling but am thin, my torso looks "normal" to other people and my arm is unaffected, I have a swollen lymph node so of course I have recurrence on my mind even though I only had DCIS, and I am even paranoid that these rib shifts and jutting out is some mets to bone or not all of it was removed.... though logically a reactionary node seems most plausible. They moved me up from a Birads 3 to 4a after comparing images from late October to my annual one in December... All of my swelling is linked to physical activity but it's pretty depressing if I can't even carry laundry myself? WTF. I work doing restoration of certain cultural objects and just using my UNEFFECTED side seems to exacerbate truncal swelling? What the hell. I am low income and already not inclined towards most lines of work. I go to an educational hospital and am on Obamacare so I can't just change where I go........

Sorry to vent but any advice/input is welcome.
Because of my age everyone I know is still running around having a great time with life. My mom also had DCIS but is fine and none of these issues. Most people seem to have arms effected... I am in shape, eat properly etc... I do all the things you're "supposed" to do (not drink, not smoke etc). I avoided repetitive activity for the most part but something so dumb like carrying one thing one time can make the rest of my life feel like shit.... then I look up chest wall cancer etc and terrible pictures and it's all very grim.


And yes, I know --- I will see a doctor I have an appointment in 2 weeks, in addition to the biopsy.



Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 6, 2019 03:03PM Trishyla wrote:

Hi there, blah333. I have truncal lymphedema on both sides, but my right side is most affected. When I overdo things, like exercising or carrying heavy things, my lymphedema will recur, causing swelling, tightness and generally a squishiness. Can't think of a better way to describe it. I have reconstructed breasts, so that's where the fluid accumulates. I would imagine if I didn't have recon, the fluid would collect in my trunk below my armpits.

So, it really does sound like truncal lymphedema to me. And you're right, few health care professionals even know what it is. It usually takes a good lymphedema specialist to diagnose you. If you can find one in your area it is worth seeing them, even if you have to pay out of pocket.

The lymph drainage massage for truncal lymphedema is very different than for lymphedema in your arms. It's important to get it right or you can make it worse.

There are a couple of threads here on Breastcancer.org that deal with lymphedema. I don't know how to link on this site, but if you do a search using the term lymphedema they should come up.

I hope you can get a proper diagnosis.

Warm wishes.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 6, 2019 06:45PM vlnrph wrote:

Good thing blah is so aware of her body and getting the unusual areas checked out. LE is a mystery to so many medical people, I hope she gets someone who will listen and provide appropriate follow-up.

In the meantime, since carrying things like laundry seems to lead to problems, maybe using a rolling suitcase or cart would help avoid that phenomenon. That would not be a good solution right now if there is a lot of snowy slush on the ground but something to think about for the future...

Also, be sure to read the StepUp-SpeakOut website for lots of excellent information!

IDC too! 🎻💊👪🐩 🇫🇮 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 6, 2019 10:52PM MinusTwo wrote:

Yes - I have breast & truncal LE. Below is the link for StepUP-Speak Out

https://www.stepup-speakout.org/

There are a couple of good threads that discuss LE - like Grrrrr... and Let's share our exercise. Most docs don't have enough education to discuss LE - let alone recognize. According to one Stanford study, 15 minutes is all the lecture/discussion they receive during all the years of med school. Hope you can find a good, qualified, trained therapist.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 7, 2019 12:10AM Trishyla wrote:

Thanks vlnrph and Minus Two for the stepup-speakout info. I need to check them out as well! Hope the OP checks back here. Lots of good info on resources.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 7, 2019 01:46AM blah333 wrote:

Thanks for the comments. I should have been more concise......... I know it is the beginnings of truncal lymphedema though it seems to come and go (though with long periods on) -- I need some help/massage. For now it seems to still be reversible. I haven't really been able to do anything to help myself yet... ANYWAY


I mainly wondered does/can truncal lymphedema cause ribs to protrude or stick out more?
Has lymphedema caused any of your ribs to jut out?

I worry because of my upcoming biopsies and that this is more of an indication of recurrence than lymphedema....... although these rib juttings have been tied to swelling/activity. That part seems to be getting worse.

Also - with lymphatic massage can ribs go back into place eventually? It is tight and uncomfortable and I am more bony instead of smooth on that side. The long term repercussions will not be good on my shoulder/back...




Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 7, 2019 02:24AM Trishyla wrote:

I'm sorry I misunderstood what you were looking for. As far as causing your ribs to jut out, it sounds unlikely to me. I believe that the lymph system is between your ribs and your skin, not underneath. Mine manifests in the tissue under my arms, in my breasts and around my lower abdomen. I suppose, though you ribs could be displaced if the swelling was severe enough.

I'm so sorry you have to deal with this. I know the wait for answers can be agonizing. I hope everything turns out well for you.

Best wishes for a good outcome.

Trish







Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 10, 2019 09:37PM blah333 wrote:

I think the word I was looking for was subluxation.

however it's been this way for some time (6 months). Hard to find any information on it or how I can get my ribs back "in place." Even during periods where I feel back to normal (no swelling) these bones remain popped out a bit. Not sure who can help me.

Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 10, 2019 10:39PM JO-5 wrote:

blah333

I am not a medical person but I do have abdominal/truncal LE.

I absolutely think a bad case of LE could push your ribs out. LE can get very firm and fibrotic. If it is under your ribs it makes sense to me that it would push them out.

Good luck getting a dr to confirm that and it will take a very knowledgeable Breast cancer LE therapist that is able to think outside the box and knows that LE can just about go anywhere.

I can't get my abdominal LE to go down with massage.....so I have no idea what you will do for LE under the ribs.

Perhaps someone will post to you that knows more.....maybe I'm wrong. With my experience my first thought was.....why wouldn't it cause the ribs to jut out....if it is under there.

The absolutely only thing I can say is cut out sugar, salt, drink a LOT of water and be as active as possible. Try the Lebeds exercises.

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 11, 2019 02:42AM blah333 wrote:

I also read about something called Costochondritis tonight..... it sounds somewhat like that, although my sternum is fine, maybe the costochondral junctions are the bumps that are jutting out (ribs 1-3). I wonder if lymphedema can spark Costochondritis?

I don't have a lot of swelling (high fluid volume) and I don't think it's thickened and gone UNDER the ribs, I just think pressure on my torso might push things around too much? The size of my torso hasn't changed and I'm quite small (especially post mastectomy). The swelling might not be so alarming if my bones werent protruding and I didn't have a biopsy coming up.

Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 11, 2019 10:49AM couragement wrote:

Reading your post with interest. I have wondered about costochrondritis as well. I had a double mastectomy with expanders back in Feb of 2017 and then replacement with implants in July of 2017. I had bilateral breast cancer and many nodes removed, but 22 on the right side. My entire right side looks different. About 3-4 ribs all jut out further on the right side and I have truncal LE there. It doesn't look obvious with a blouse on but with a t-shirt that is tighter you can see this area that curves out a few inches more than the other side. It is uncomfortable as well with that classic feeling of "carrying a football or roll of paper towels" under your arm pit. That is the way my PT described it and it fits to a "T". If I get too warm, work out too hard (or even carry a heavy purse on that side) the swelling feeling creeps up to my neck and down toward my waist. The inside of my arm gets sore and heavy. If I eat much sugar or a lot of baked items that entire area swells up. All my doctors say it is a results of all the tissue that was removed and the shifting of muscle and fat. I agree with them, it just looks odd and feels odd. The tumor board has met several times on my case given what a low percentage of women have bilateral breast cancer with multiple sub-types (plus an odd medical history) and exactly one half of them said not to do radiation because my right side would more than likely have such severe LE that it would become a disability severely affecting my QOL.

I have a very large rib cage and can imagine if I were thin (I am about 20 pounds overweight) that it would be even more pronounced. Wishing you some relief and answers. Let us know how it is going.

Sending hope and love!

May we all be well Dx 5/11/2016, IDC, Right, 2cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2+ (FISH) Dx 6/10/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Targeted Therapy 8/16/2016 Herceptin (trastuzumab) Chemotherapy 10/15/2016 Gemzar (gemcitabine) Surgery 2/24/2017 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/6/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab)
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Feb 11, 2019 01:07PM JO-5 wrote:

couragememt,

That all make a lot of sense to me! Since reading your post I'm wondering if that is possibly my problem.

Our history is different, but I had a lat dorsi flap to cover a very large area from the mastectomy. My spine is pulled out of line as well as my navel is about 2 inches to the right from stretching the skin to sew my back together.

blah333.....sure sounds like that could be your problem as well.

Sure wish drs knew more about LE.

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 12, 2019 10:22AM couragement wrote:

Interesting JO-5. It sure makes sense to me too that our bodies would end up a bit worse for wear given all that we have gone through. I am so sorry to see about your flap going necrotic. Aye! That must have been so scary. How are you doing now with all that? Have things healed? I know things have improved in mastectomy surgery a lot over the years, but the fact is that it is an amputation(s) and with that comes all sorts of difficult stuff. I have read doctor's papers and spoken to some that state if we were to call it an amputation vs mastectomy people would more readily understand that it is a big deal and that the body has to rearrange in many ways. The word mastectomy sanitizes all that we go through and makes others think it is no big deal and we are just back to normal. I have started to refer to it as amputation and it does help friends and family understand the magnitude of what has gone on in the body, although some people think it is being dramatic. They need educating.

May we all be well Dx 5/11/2016, IDC, Right, 2cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2+ (FISH) Dx 6/10/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Targeted Therapy 8/16/2016 Herceptin (trastuzumab) Chemotherapy 10/15/2016 Gemzar (gemcitabine) Surgery 2/24/2017 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/6/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab)
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Feb 12, 2019 11:56PM blah333 wrote:

I do not have a good mirror at home but got a better look at my ribs at work. I did not have reconstruction... I saw that my ribs do jut out right along where the there is that "junction" that connects the ribs to the breastbone/sternum. So it is plausible that I could have costochondritis. But now I wonder: can costochondritis cause lymph nodes to swell? Though I have had a swollen lymph node before this chest pain... Just trying to attribute these swollen nodes to something other than recurrence. I'd rather have costochondritis that is exacerbating mild LE than recurrence, LE and costochondritis... I just have to wait. I had a biopsy today. I guess that is taking my mind off of my swelling and my ribs.


Regarding the other responses - if you had recon involving your back/flaps - of course that could shift your spine/ribs! I've also read that some women have had mastectomies can develop scoliosis.

Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right

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