Chest Wall Recurrence--Feedback anyone?

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Brendatrue
Brendatrue Member Posts: 1,830

I am interested to hear about others' experiences with chest wall recurrence. I had my first left breast ca, with surgery, chemo and 7 weeks of radiation, in 1995; my second left breast ca, with mastectomy and hormonal therapy, in 2006; then was diagnosed with chest wall recurrence right over my sternum (with invasion of the dermis and lymphatic spaces, no nodal involvement) in January 2009. I had a biopsy that removed the very small tumor (less than 1 cm) but no additional surgery for excision of the surrounding area. I had asked all the MDs involved in my care about further surgery, and their recommendation was no surgery. I just finished Taxotere/Cytoxan x 4. I had received a recommendation for another course of radiation, to begin after chemo, that would target a very focused area on my chest wall.

I obtained a second opinion at one of NCI's regional cancer centers last week and a few days later they presented my case to their tumor board. I was advised that I need a wide excision of the chest wall area and that I need to see a surgical oncologist. I also was advised that another course of radiation might be needed after surgery and that, if I chose not to have surgery, I would definitely need to have a course of radiation that again includes the maximum dose and that targets not only the chest wall area but also the entire left flap area ("former" breast area and armpit). (I have been advised about possible side effects, like rib fracture, skin deterioration, cardiac issues, and it was strongly emphasized that the risk of further disease progression is much greater than the risks related to radiation.) Is there anyone with a similar situation who would be willing to share their experience as I continue to make some tough decisions? I really appreciate your input!

Comments

  • PJB
    PJB Member Posts: 2,615
    edited June 2009

    Brenda, I don't have experience with chest wall mets.... just wanted to lend a shoulder to lean on as you decide how to go forward. 

    Paula 

  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    not sure if my situation is at all helpful to share since this is my first round with breast cancer, but i had a 1.2cm tumor 1mm from the chest wall, grade 3, triple negative. had a bilateral mastectomy. the surgeon could not get a 2mm clear margin, only 1mm, so i was told i could have additional surgery for excision or chemo and radiation. i chose the chemo and radiation. had dense dose AC/T and am now having tomotherapy radiation, 28 treatments and 7 boosts. if you can get tomotherapy radiation, it is more precise for chest wall tumors than conventional linear accelerators. 

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited June 2009

    Paula & ddlatt--Thanks for your posts. I appreciate both the support and the info re decision making and tomotherapy. ddlatt, I hope the remainder of your treatment regimen goes smoothly and your follow-up will yield NED for a long, long time. Paula, I clicked on your profile and saw that you are coping with liver mets; I hope you will have a good response to the Gemzar/ Cisplatin combo (think I have that right--still have chemo brain and sometimes can't remember beyond a few minutes...) and have "years and years" ahead of you just like your onc said.

    I have spent the week trying to work as well as doing research re chest wall recurrence, talking with providers, and arranging follow up assessment and care (another PET scan, surgical oncology). I have to get lots of materials and info sent to the surgical oncologist for review before I can get an appointment. My husband commented that doing all the cancer oriented work (not counting the healing) is like having a part-time job; it sure feels like it.

    A part of me wants to leave employment and focus on care & healing, and another part of me wants to maintain employment and try to balance that with all the other aspects of my life, which now include this huge cancer focus again. I already have used 36 days of FMLA this year (had lots of complications with chemo) and I am trying to protect the days remaining, since I will likely have surgery. Learning to balance all those parts of my life warranting attention and letting go of those things that are just not so important anymore will be an interesting process. Hmmmm, it seems like I have said that many times before now--guess I will be saying it for a while.

    Holding hope for us all,

  • cathy50
    cathy50 Member Posts: 46
    edited June 2009

    Can a pet scan show skin mets ?

  • NYCarol
    NYCarol Member Posts: 347
    edited June 2009

    Brenda, I'm not sure what state you are in, but can you collect short term disability for 6 months?  After not working for six months you can get Social Security disability since you are stage 4 BC.  Being able to focus on your body might add so much to your quality of life and survival.  Certainly something to consider. 

    Carol

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited June 2009

    Cathy--I was told that skin mets can be diagnosed in several ways, including biopsy and PET, but I certainly am not clear about the process and range of diagnostics. I am supposed to have another PET scan this week, if my insurance will approve a second one in 4 months.

    Carol--I could not get a short-term disability policy with employment that I started 4 years ago because of my cancer history. I am familiar with Social Security disability requirements, and I could manage the 6 months without income if I were to meet the requirements.I have talked with Social Security and it does not appear that I would qualify for SSDI at this time.  My medical oncologist has told me that "technically" I do not have Stage IV disease because I have no distant mets, and I have read both conflicting and confirming info re his response and my situation. He and others also refer to my situation as "unusual" and sometimes, "early mets." I also get conflicting info regarding the stats related to my situation. One of the reasons I went to the NCI regional cancer center was to get more info, and now I will have to obtain more consults and (likely) surgery to get more information.

    Thanks for the input! I am still hoping to hear from others as well.

  • Ter
    Ter Member Posts: 357
    edited June 2009

    Hi Brenda,

    Chest wall pain?  yea, but most of its under the R arm where 1st mast done, and down all the ribs on that side, as they had to scrape all the cancer on all those ribs...all I can think of and call it is that they used a "potato peeler"..LOL

    If the pain in chest is from where i had a portacath, which is in there no more, as it broke off (the tubing) later i found that out, but complained about it from day one, but went thru chemo and blood etc from it..long ugly story, but it has left me with pains in chest/heart (as when the tube broke off it fell directly into top valve of heart, but no one would listen to me..and now we all wonder where the chemo went..this port thing ended up a life/death thing had i cought, sneezed, tripped, coughed, laughed etc, and being even prior to BC I always took daily naps or just rested, and dr's said if i had moved while resting I could of died and no one would know about it as i would of bled to death and no one would of known why, cant lay on the pain in chest is spooky, as i think im having a heart attack...so far nope, thank G*d.

    One thing is kind of "funny to me" as i bruise EXTREMELY easy and Im very lopsided even w/cane I was trying to do laundry and had all the clean dry laundry in left arm nice L:& ready to fold, when a sock fell, so I put my cane to the side, and i have a wrought iron hand rail on that step to go from garage to kitchen, and when i bent down  oy vey I thought i was gonna die, as my chest wall on R side, port was on left (left a scar) but when i bent, dang sock should of just laid there, but oh no, i gotta do everything now, and when i bent my chest bent down deep into the railing of wrought iron, and it was the end area (like 1 1/2"x1 1/2") went deep deep into my chest..that was like 6-8 months ago..do u know that i hit so hard its not a scar, but a huge dent about 3"X 1", and its like straight across the chest from where port was..so instead of 2 boobs I have 2 indentations, adn they dont make bras like that..lol  had to add a bit of humor.

    I sure hope your pain and mine and everyone else's pains go away.  Isnt it amazing how before BC normnally most of us were in half way OK condition, and now were like we seem to add 100 to our ages, and hobble around like an ole wounded cowboy.

    Hugs

    Ter

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited June 2009

    Ter--Thanks for responding. I can relate to the comment about once being in halfway OK condition, and I find myself wishing sometimes--when I am feeling a little disconnected from my reality--that "all" I had to deal with were the "old problems." Oh, well. I may not be able to change what has happened in the past that has gotten me to this point, but I will still do all I can to be a part of what happens from this point onward. I don't think I have too many more illusions about being in control, but we'll see; some of those illusions are hard to detect!

    I'm sorry to hear about your experiences with the port-a-cath. I am wondering if I should have mine removed asap, since I am dealing with some "irritation" with it. It seems like many, if not all of us, have stories about knowing something was/is wrong and not being heard in the beginning, or ever, which often really complicates our situations even more. I appreciate your sense of humor. I remember reading somewhere that even if someone just has "black humor," they at least have a sense of humor, which will help to cope with some really tough situations. I know that I have laughed at some things that surprise others. And I try to just keep on going, like an old, wounded cowgirl. (Thanks for the reference....)

  • wayover20
    wayover20 Member Posts: 445
    edited July 2009

    Hi Brenda and sorry you're going thru this again.  Not sure if you remember my story so here it goes: rt mast Jan 07 for node clear trip neg ILC then chem x 6months.  good till aug 08 when SOB landed me in the ER and ct found large mediastinal mass.  my world changed forever.  I wanted surgery to remove it but both drs. said no way since where it was located in the chest too high risk for damage to critical vessels as well as very high risk of creating more spread of the cancer cells.

    Now onto 33 IMRT rads to chest --this type beam shapes to the mass to prevent radiation damage to other areas as much as possible.  But where my mass was it still got some of both lungs and part of heart.  Then onto chemo where I've been on since Nov 08.

    Good news, with each and every ct chest mass has showed more shrinkage and I've been off home oxygen now for about 2 months.  Yes I ended up with radiation pneumonitis 3 months after last rads but that parts over now.

    My onc said I went from stage II to stage IV with this chest mass as it was pushing its way ou thru my chest (you could see a small lump on my chest if I wore a t-shirt) and encouraged me to begin the ssdi process since I'm alone and couldn't miss getting some type of income when my short term disab. ran out and if I couldn't return to work yet.  Thank goodness I did it since with the rads pneum. I havent' returned to work yet.  anyway, I was approved within 2 months I think and benefits started in March.  If you tell soc. sec. you are stage IV they will expedite your claim but you will still have the 6 month wait to get first check and you have to be NOT WORKING at the time you apply. 

    The radiation for me was very fatiguing, more so since it was in the center of my chest and the rads dr. said he was "hitting me hard" to get this mass under control. 

    I wish you the very best and just know you can get thru this. You are blessed to have such a supportive spouse.

    Feel free to pm me anytime.

    Hugs,

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited July 2009

    Pat, I read your response several days ago but have just not had the energy to respond! I hope you are doing well with the long term chemo. I realize this third time around with cancer that "doing well" is certainly relative. I appreciate the info regarding what you have experienced, since our situations are somewhat similar. My visits last week with a surgical onc and with my med onc now have me heading toward surgery; I will see my general surgeon tomorrow. After spending 5 weeks being told that I would likely need wide excision, possibly with skin graft, I have now been told that a smaller excision, with reportedly no risk for skin graft, is the best surgical option, and that my local surgeon should be able to manage this. Then if by chance I have clean margins, I can "probably" bypass radiation, which would be good since I had extensive rad in the past.

    Just about every provider I see calls my situation "unusual" since I detected the malignant chest wall nodule so early/small, and I have no lymph nodes positive for ca, and I often hear about the "controversy" surrounding care options in cases like mine. At least now I have a better sense of direction and I can pursue planning, which is challenging to manage on top of working as close to full-time as I can. Some days I can hardly believe that I am as tired as I am; at least I know that I am not the only one to feel this way!

  • RBB
    RBB Member Posts: 4
    edited July 2009

    Hi Brendatrue

     Am doing some research on chest wall recurrence. My daughter has just been diagonsed with her 3rd recurrence since her original DX in 2005.

     So far it continues to recurr in the skin area first. CT scans this week will tell us if it has become metatastic.

    In Chemo she has received: TAC, Carboplatin, Navelbine and 30 rounds of rads. This last time she received 6 rounds of Abraxane + Avastin. she took Tamoxifen until the last recurrence in 2008.

    We are currently looking into Photodymanic Therapy as a less invasive therapy and less toxic, and is showing promise in chest wall recurrences in the skin. since the previous chemo combos and radiation gave her only 15 months between the 1st and 2nd recurrences, and only 3 months since chemo to the present 3rd recurrence, we believe it is time to try something not as systemic.

    Hope you are able to  resolve the disability issue. The SS papers I printed out tonight say:

    By law, Social Security has a very strict definition of disability. To be found disabled:

    1. You must be unable to do any substantial work because of your medical condition, and

    2. Your medical condition(s) must have lasted or be expected to last 1 year,

    3. Or be expected to result in your death.

    I understand Onc's and the govt not wanting to give a free ride to everyone, but come on, my daughter could hardly get around during her 2nd set of chemo regimines. This last one she was able to work a little, but was still pretty sick. We are applying for SSI disability because she knows that this 4th time, she just doesn't have the energy to do it all.

     Hugs

    Bobbi

    Mel's Mom

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited July 2009

    Brenda - there has been some discussion on YSL BB about the phototherapy Mel's Mom posted about:

    I'd post a link, but I don't see a direct hit, and ...

    Anyway, here's the text of the original post that started the discussion: 

    After dealing with breast cancer repreatedly for 5 years, and exhausting all chemo, radiation and surgical options it seemed there were no more weapons avaliable to me. The cancer I have moves in the skin channels on my chest. It is still considered breast cancer.

    I am sharing this in order to try to help someone else. I have several Drs. and NONE of them knew to recommend this for me.

    I Googled and found a treatment option in NC at the Leo Jenkins Cancer Institute. I found out about this by Googling the words, "Chest wall recurrent breast cancer." There are 3 different hospitals that have done very positive studies on Photodynamic therapy, (PDT).

    PDT is FDA approved for lung and esophegeal cancer, but has been used with very good results for women who have tumors that keep popping up on their chest. It is a treatment where you get an injection on Monday of a photosensityzing agent, and 48 hours later have the cancerous area lazered. The photosensityzing agent concentrates in your cancer cells, and then works in conjunction with the lazer to kill the cancer.

    My contact at Leo Jenkin's Cancer Institure is Teresa Parent 252-744-1789. She walked me through the process, over the phone, and helped me to understand how the procedure worked. I flew in on Sat. and flew home on Friday, and now am just healing at home and am hoping this has killed the cancerous area. The studies I read were very encouraging to me---especially the one this hospital did in 2000-2002. The biggest down side is that you are photosensetive for 4-6 weeks afterward.

    I only wish I had read a post like this one back in 2005 when I first recurred. I hope this helps some one out there.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited July 2009

    Bobbi--I appreciate your post/information. I am hopeful for your daughter that her CT scans will not reveal further spread of this sneaky disease and that her application for disability will be approved. I realize very well how chemo and the cumulative effect of multiple treatments can just knock you for a loop! I was almost embarrased to let people know how hard a time I was having with each successive round of Taxotere/Cytoxan; however, I did do all possible to allow myself time to recover after each round. I am still recovering after 2 months. My experience with CMF chemo years back was less challenging, but, hey, I was younger then. I hope the photodymanic therapy will be a good option for your daughter, and one that will result in a very positive outcome for her. I will continue to check this thread in the event that you post more, including information about your daughter.

     Sue--I also appreciate your post with the good information on photodynamic therapy. I have not read about this, to the best of my knowledge, as a treatment option for breast cancer, but I do recall reading about it somewhere. I will gather more information so that I can follow up with my MDs about it. I am so fortunate that both of you responded to my post!

  • RBB
    RBB Member Posts: 4
    edited August 2009

    Hi Brenda

    How are you doing with disability issues? Anything happening yet?

    My daughter is set to start the Trial for PDT at Tufts Medical in Boston this month. We will be away from home just a week. I have googled PDT and and find more and more encouraging information for chest wall recurrence. Hope your Dr's will check into it.

    Hugs

    Bobbi

    Mel's Mom

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Hi, Bobbi (and all who check this post)--

    After consulting with several MDs and doing more research, I agreed to have surgery to address my chest wall recurrence. I had surgery 12 days ago, and the area removed revealed clear margins, so at this point I have NED. Thankfully I have had no surgical complications and my recovery is going well. I realize that I am likely to experience further spread of this disease, and if so I now have another option available (PDT). More than likely I would really have to fight my insurance company, but I am growing accustomed to doing so.

    Does your daughter have any feedback yet with regard to her application for SS Disability? I am consistently told that SSDI is not an option for me at this time and that I can only pursue when I have more advanced disease.

    I really hope that your daughter will do well with the PDT trial and that PDT will prove to be an effective way to control her disease. I will continue to check in here in the event you give us an update. She is certainly fortunate to have a mother who is as involved and supportive as you are!

  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    I have yearly mammography of both breasts, the reconstructed one and the "real"one, they found microcalcifications behind the reconstruction on the chest wall, a biopsy was done of some of the microcalcifications they were benign but still I am being followed very carefully because I was told it was the best to do and I agree.

    This was a couple of years ago. Please let me know how you are doing.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Dreaming--I'm glad to hear that your biopsy revealed no malignancy. It sounds like your careful attention is what you need to be doing. I have found that, at times, it is difficult to find the balance between being attentive and overly vigilant, but I keep trying. I continue to heal well from my surgery but I have developed some very specific vision disturbances, so now I will be working on getting approval for a brain MRI. It seems like I exhale more deeply and have less anxiety, then a new problem pops up. Oh, well.... I remain hopeful about coping with "life with/after cancer"!

  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    Hi Brendatrue, for me to get a brain MRI is always stressful because I am claustrophobic and I have to be sedated, my doctors are very vigilant because how I was diagnosed, I had a negative mammogram,ultrasound,no lump, no family history not high risk; it took me 2 months to convince a surgeon, I saw 3, to do a biopsy in the site where I had pain.

    And I guess it has been a lesson, at times I think they go the deep end.

    My microcalcifications are stable with no change.

    Let me know how it goes with your eyes, I had a growth taken in August ,it was benign, only to have stiches in my eye was awful. Good luck, make the best of each day and reward yourself when ever you have a test, or doctor visit, this is what I do.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Dreaming--Thanks for the support! I will have my Brain MRI Friday. I appreciate the reminder to reward myself in some way after MD visits, tests, etc. I have had so many of those that I have forgotten that being extra kind to myself afterward will help with the anxiety related to the testing then the waiting for the results. Every time I have been diagnosed (3 times now!) I have experienced worrisome symptoms and then pushed for assessment. It is tiring, and I also have to remind myself that just because I have found "something new" it does not mean it is serious.

  • RBB
    RBB Member Posts: 4
    edited August 2009

    Hi Brenda, checking in to see how the MRI went last week 

    I was glad to hear that you had your surgery and that they were able to get clear margins.

    My daughter finished her PDT at Tufts this week, and is doing well. it is amazing to see the reaction of the cancer to the treatment. She will need another treatment as soon as this one is healed, but she said it was not near as bad as she thought it might be. So if you ever(praying that it will be NEVER)need PDT, Tufts is a trial and is free except the trip there, and North Carolina will bill your insurance. One gal said her insurance paid hers in full.

    Keep us posted

    Hugs

    Bobbi

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Hi, Bobbi--I forgot to post the results of my MRI here. The report said my MRI was "unremarkable." I was never so glad to hear my brain described as "unremarkable"! I still have significant vision changes, so I will probably see a neurologist. First I am planning to see an ophthalmologist, since that is easier.

    I am glad to have NED status at this point, and I hope that will last for a long time. I started tamoxifen five days ago, so I am hopeful I can tolerate it and that it will promote my body's "anti-cancer" status.

    I also am very glad that your daughter had a good response to PDT. I really appreciate both your letting me know about that particular form of treatment and your support. I truly hope your daughter will continue to do well!

  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    Good news Brenda, make sure that you get a visit with an ophthalmologist, and let us know how it goes.

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