Inoperable local reccurrence HELP

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sian
sian Member Posts: 23
edited June 2014 in Second or Third Breast Cancer

Hi

I'm 46 years old with 2 teenage daughters. 

I was diagnosed 5 years ago with a 3.5 cm ILC N0 M0.  Everything was going well till august when I started getting a pain in my armpit and down my arm.  I went to the gp who said it was nothing to worry about and sent me home.  I went back to the GP 5 times between Aug and Dec only to be told it was nerve pain.  I saw my oncologist and breast team in Jan, had mamo all clear they said the pain was wear and tare of the spine.  Went back to GP 2 times before demanding to see someone again, was referred to the breast surgeon.  He again said wear and tare of the spine but said he would give me xray spine and underarm ultrasound to confirm.  At ultrasound and subsequent biopsy they found a 2.2 cm tumor under my lymph clearence scar.  

Well since then I have had CT scan Bloods including tumor markers and a bone scan, all came back clear, yahoooooo.  

Now for my BUT, the tumor is inoperable as it has squeezed itself in between my ribs into my thoracic cavity.  They cannot safely remove it and get a 1cm margin so they have deemed it inoperable.  

As I have had radiotherapy to the breast before they are not sure if they can give me radiotherapy to that area as it's very close to my previous treatment.  

Chemotherapy to shrink the tumor then operate appears to be the main contender, but I have read that ILC does not respond well to chemotherapy.  So where does that leave me?

Has anyone had ILC treated primarily with chemo or radiotherapy, was it successfull?  Should I seek a second opinion re surgery?  It seems odd that they can do a heart and lung transplant but they cant remove a 2.8 cm tumor from my thoracic wall.  

It will drive me round the bend if I have a local reccurrence in my armpit and I just have to wait for it to spread because there is nothing they can do??????

HELP, any advice, suggestions or similar experiences much needed.

Sian 

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  • pitanga
    pitanga Member Posts: 596
    edited April 2009

    Sian, I am so sorry you are going through this! I also was just diagnosed with a recurrence, mine in the breast, and a metastasis as well, after 9 years. So, unfortunately we are members of the same club.

    I cant answer your question about how lobular responds to chemo, except that a friend of mine who had a lumpectomy for it last October is just finishing chemo now. She did cytoxan followed by Taxol. But, just thinking aloud--even if lobular has a lower success rate from chemo, in absolute terms, it still might be possible that it could shrink the beast enough that it could then be safely and completely removed, no?

    All my best to you, and many, many ((((((BEAR HUGS))))))

    Lisa

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  • marshakb
    marshakb Member Posts: 1,664
    edited April 2009

    Sian, there are many women here who did chemo first then had surgery.  Their tumors had shrunk so the idea that lobular doesn't respond to chemo is not true.  As for the rads, they are  very careful to only radiate the area they are going for, I mean down to the mm's.  If this  new area is a little below that area then they may still be able to do rads again.  Hang in there, let us know what your docs plan to do.  Hugs.

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  • sian
    sian Member Posts: 23
    edited April 2009

    Hi Lisa

    Thank you for taking the time to respond to my post.  Im sorry that you have also been struck with the curse of reccurrence and mets, and while my mets aren't apparent yet they are probably swimming around ready to grow.  

    Where are your mets?  What treatment are you facing?  

    For me it feels so  surreal at times, I feel and look so well, yet I'm trying to accept a diagnosis which is incongruent with the way I feel and denial is allways a seductive option.  I have two kids and while all my instincts tell me to spend as much quality time with them as I can, it's very difficult because I am so affraid and withdrawn and when I look at them I feel their pain and I know it's because of me!!  That sucks.  Do you have kids?

    I guess that the chemo may shrink my tumor enough for them to opperate, but that extended and perpetual not knowing leads to long term fear and stops me form moving forward toward acceptance of my situation.  How are you copeing with the news?

    Big hug back to you

    Thank you

    Jane 

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  • sian
    sian Member Posts: 23
    edited April 2009

    Hi Markshab

    Thank you for replying to my post.  It means a lot to me that people are taking the time to give me their thoughts.  I read one of your other posts regarding leaving your loved ones and the pain that the sorrow in their eyes give you, I feel exactly the same way about my family, and while I know it's not my fault I feel guilty for puitting them through this, I have lead a chequered life and havent allways taken care of myself properly, drinking smoking etc, but I guess thats all in the past now and what is done is done.

    You also said you didnt cry, I dont cry either, I think that for me it's because I feel more guilt and fear than saddness right now, that sense that whatever happens from here on in we will never feel carefree again, that is probably not the case though.  I met a friend in hospital during my initial surgery, who went on to develop mets and passed away two years ago, her cancer had come very quickly and was very aggressive.  I had the priveladge of spending time with her in the months leading up to her passing, and that experience helps me to cope, as I saw her transition from fear and saddness to her contentment and acceptance near the end.

    With a bit of luck and the wind behind us  we wont have to face that reality for a very long time but while it feels overwhelming now, I am inspired by all the women on here and around me who are fighting the fight and still able to laugh, our time to laugh and cry will come, were just not there yet.

    Thank you for the supportive comments about the chemo, and the rads, I cant wait now for my onc apt so I can start to do something constructive, this sitting around with a tumor doing nothing about it does my head in.

    Thank you again for your post and inspirational comments.

    A big hug to you

    Jane 

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  • wayover20
    wayover20 Member Posts: 445
    edited April 2009

    Hello Jane and so sorry you're having to go thru this again. Your story and mine are very similar since my mediastinal reocurrance "snuck" up on me after what 1 year and 1 month from my original mastectomy/chemo.  I was having pain to my chest when I would laugh or sneeze or cough and slowly started to notice a pooching area just to the inner side of the mastectomy scar. None of my doctors took it seriously  and I didn't push it since it of course I didn't want any bad news myself!  Well the pain just sort of leveled out but then I started with very slight shortness of breath off and on which didn't really alarm me since I'm really out of shape, until BAM, on morning I couldn't walk to my kitchen without a really hard time breathing and it scared me so bad I went to the ER where a cat scan found a 7x5 CM mass to the space between my lungs!!  Subsequent biopsy showed same cells as breast cancer.

    Anyway, so like you, I was told no surgery since because it's mets and due to the location very high risk of spreading the cancer further not to mention the area is saturated with vital organs/vessels.

    So since August of 08 when all this came about I've had IMRT rads and been on chemo. The  scans I've had since then (even this last one in March) still showing a decrease in size of the mass since original scan.  I have had no pain probably since 1 week of first starting rads no matter how hard I cough or laugh.  My only complication is getting rads pneumonitis in Jan from the intense rads but that isn't all that common so don't worry. So I'm on home oxygen and trying hard to rehab my lungs so I can get back to work. 

    When all this started in august I asked my onc how this changes my staging since I WAS a stage II and she said since the mass was coming thru the chest wall it made me a stage IV.  Since I am alone I decided to start the process for SSDI in the event I couldn't return to work as soon as I could and exhausted the 6 month short term disability income.  Well now I am SO GLAD I didn't since with the pneumonitis onset and lung issues I havent been able to work yet and the short term stopped in early March, the SSDI started mid march so vital bills are getting paid.  I cringe when I think "what if" I hadn't applied for SSDI, I'd be out in the street!

    What I can tell you is my mindset in the beginning of this new journey was planning for my passing, grieving for things I would miss being around for and generally being in a bad funk for months. But I see and feel progress and if it weren't for the lung stuff I'd be back at work and being as "normal" as I could. 

    Take it one day, one step at a time and trust your onc but continue to be pro active. Get copies of your scans and labs reports and READ them then ask questions if you don't understand, ask how your blood work is (all my labs have and still are normal), ask what chemo the nurse is getting ready to give you and make sure it is what the doctor said you would get (personal experience).

    Things do get better!

    I wish you the very best and feel free to pm me anytime.

    Pat

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited April 2009

    I have ILC and I got a great response with chemo. I am praying that you also get a great response.

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  • Gitane
    Gitane Member Posts: 1,885
    edited April 2009

    I, too, got a great response to chemo.  Warm hugs. G.

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  • NYCarol
    NYCarol Member Posts: 347
    edited April 2009

    The new specialized radiation with curved beam technology can target very exact areas...such as directly to your tumor with only barely touching other areas.  It is all computerized and simply amazing.  Once you are done with chemo perhaps you can have this radiation to "wipe out" the rest of the tumor. 

    I do understand how you are feeling.  My BC spread to my lungs after 5 1/2 years.  What a shock.  I'm doing very well now.  Wishing you the same!

    Carol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009
    Jane - I hope you're doing okay. Have they told you what type of chemo you will be getting?
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  • sian
    sian Member Posts: 23
    edited April 2009

    Hi LauraGTO

    Thank you for taking the time to reply to my post. 

    Sorry I took so long to reply.  No not yet, I have an appointment with my oncologist on 6th May to look at my treatment options.  Do you know what chemo regime is most effective on lobular cancer?  I did not have chemo the first time around, I had Zoladex for 2 years and Tamoxifen for 5. My tumor is 90% positive to oestrogen.  

    I don't have a very good relationship with my oncologist, so  would like to have some Idea of what she should be offering me, so I can feel more empowered and not so vulnerable when she tells me what they are prepared to offer me. 

    Any advice/suggestions would be great.   

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  • sian
    sian Member Posts: 23
    edited April 2009

    Hi NYCarol

    Thank you for your reply.  Do you know what this new procedure is called?  

    I found out about cyberknife on this forum, I have telephoned 2 clinics in Europe and they have both told me it's not suitable for breast cancer, only spine mets, if there is anything else out there which would be a suitable alternative to surgery and radiotherapy for chest wall BC tumors I would love to hear about it.

    Thank you

    Do you know if they take the same view in the US? 

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  • Diana_B
    Diana_B Member Posts: 287
    edited April 2009

    Hi Jane,

    I don't know anything about ILC, but I also had a recurrence in both my axilla and my internal mammary node and they are being treated with hormonal therapies.

    The axillary tumour is still there and shrinks and grows a lot but the internal mammary is no longer visible and so the cancer there was probably killed by the hormonals.

    Excuse me if you've mentioned it here and I missed it, but is that a possibility for you? I too was on tamoxifen but it failed me. The AIs have been more effective for me.

    Out of curiosity, can you tell me if you're PR pos or neg?

    BTW, I too had bad arm pain that went undiagnosed for months. After it was diagnosed people kept telling me that the arm pain etc was unusual, but then I went to my mayo clinic book on bc and it was there as one of five symptoms of recurrence. Hmm...

    Just remembered about this: here's a link to a trial they're doing on chest wall non-operable recurrences. While I think they're recruiting only Americans, the treatment method may be relevant to you and could be offered elsewhere. It involves chemo and hyperthermia together.

    http://clinicaltrials.gov/ct2/show/NCT00346229

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  • sian
    sian Member Posts: 23
    edited April 2009

    Hi Darya

    Thank you very much for your reply, It is always good to hear from someone with such a similar story, 

    My latest tumor is ER +90%, PR-.  My Original tumor was ER/PR + Her2-, her2 results not in with this one.

    I have to say that I tolerated tamoxifen and Zoladex very well, and the option of going down the hormonals route is very appealing.  

    Also, after the zoladex I was menopausal for 4yrs tot, then my periods started again, loads of tests, concluded I had just reverted to pre-menopausal.  I asked for an oopherectomy but my onc said it was unnecessary.  6 months later my symptoms start,

    My breast surgeon thinks the reccurrence  occured as a result of my increase in hormones.

    Also with ILC, Ive read on the net that a recent study showed that ILC does not respond to tamoxifen, they think because of cholesorol in ILC cells preventing uptake.  I dont think the same problem applies to other hormone therapy such as AI's.

    Do you know what hormonal therapies they give to premenopausal women?  I believe I would have to shut down my ovaries either radio or surgery, is that the case?

     My problem with hormone therapy is that it feels like a soft option,  and I think that the more drugs I take the better chance Ive got of hitting 50.   Also the chemo might shut down my ovaries, then hormonals.

    It's still not clear to me what I should do but your story has inspired me to think outside the box again and consider all my options.  

    Thank You

    Jane 

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  • Diana_B
    Diana_B Member Posts: 287
    edited May 2009

    Hi Jane,

    I was interested in your PR status because they say tamox is not as effective with PR- cancers and so I wondered.

    I don't think you should think in terms of soft vs. hard and that you should take the harder option. Hormonals can be at least as effective. Also, when you're diagnosed with a recurrence they say we'll never probably be totally cured, so we need to avail ourselves of all the useful treatments for as long as they work.

    In some ways I find hormonals quite tough psychologically because you're going through something distressing and you also have side effects from the meds, but no one can see what you're going through. To them you look perfectly normal, so it's harder to remember that you need to be kind to yourself. I think people offer more support during chemo.

    Anyway, just a few things to consider. Good luck whatever you choose. The longer I'm in this cancer game the more compassion I have for all of us struggling to figure out the best option. In so many cases there are grey areas and nobody can say for sure or decide for another person.

    Sincerely,

    Darya

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  • NYCarol
    NYCarol Member Posts: 347
    edited May 2009

    Sian, the radiotherapy I spoke of is cyberknife.  They have a specialized robotic machine that is call syncrony (sp) that is able to do something previously thought impossible....radiate the lungs/chest when you are breathing.  I can't speak about your specific tumor, but I have read that over 5,000 patients have been treated with this cyberknife in/on lung area.  I do know that Georgetown Hospital is one of the pioneers using cyberknife on lung tumors.  Cyberknife is used here in the USA on the brain also, and has had great results.  A number of the women here have had excellent results with cyberknife.  Maybe you should call some other clinics in your area...cyberknife is used way beyond bone/spine mets. 

    I am wishing you the best.  I know how hard it is to decide what to do.  Sometimes I wish we were not given so may options!

    Carol

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  • sian
    sian Member Posts: 23
    edited May 2009

    Hi All

    Hope you are all well

    Thank you all for your support and advice, I dont know what I would have done without it. 

    I saw my oncologist today, she diagnosed a stage 3 locally advanced chest wall recurrence no thoracic mets. 

    Daria, she started me on Zoladex again and Femora in 2/52, no chemo, all I could think of was what you had told me and it gave me the confidence to trust her judgement and go ahead with the hormone therapy route, thank you.  Not amenable to rads or surgery at present but she hopes to make the tumor resectable over the next months. 

    NY Carol, I did bring up the cyberknife option with her, I had written to boston medical centre who had agreed to review my notes for eligibility, I also found a study of 5 women treated with locally advanced breast cancer that was innoperable, and cyberknife had been 100% successfull at 12 months follow up.  I showed her my emails to boston and the research paper.  She told me it was not standard practice and that a study of 5 people did not constitute evidence, therefore she would not agree to the referral.  We had words, agreed to dissagree, but she did reluctantly concede to sending my paperwork at a later date if I insisted despite her objection.  Not sure if she will keep her word, things got pretty ugly before she agreed.

    I also asked for an oopherectomy, (well begged would not be putting too finer point on it) but yet again it was a brick wall, she said the risks of surgery and the fact it was not reversible meant she would not agree to it, I said surely those risks were mine to take, I dont want it to be reversible, thats the point, and I believe the risks of a further reccurrence is greater than the risks of death by keyhole surgery, but nope, apparently only she gets to decide whats best for me????

    Sorry to rant on, but my appointments with my stonehearted patronising dismissive conservative oncologist drive me up the wall, and I just wanted to let off steam.  Does anyone else have these types of problems with their oncologist???  I would ask to change, or see someone privately, but I live in a remote part of the world, and it would be a 2 hour drive each way to see someone else>  Any thoughts on what I should do about my challenging oncologist, I want to be a participant in my care not a passenger?

    Thank you all again for taking the time to post your responses, and I hope you are all well.

    Jane

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  • marshakb
    marshakb Member Posts: 1,664
    edited May 2009
    Jane, tamoxifen totally failed me in only 1 1/2 years on it.  (I am ILC too).  After the mets dx my onc switched me to Femara.  I am ER/PR pos and had to beg my onc to check my hormone levels.  While it showed I am in menapause (from the chemo 2 years ago) the estrogen numbers were not zero so I insisted we do something  about the ovaries or why bother trying the Femara?  He started me on Lupron shots to completely shut them down.  I would ask about that.
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  • NYCarol
    NYCarol Member Posts: 347
    edited May 2009

    I cannot imagine why she would say absolutely no to removal of your ovaries.  I have never heard of somebody else who received a flat NO unless they had other medical issues (heart disease, etc).  You are really stuck it appears unless you are willing to do that 4 hour round trip drive.  It is your life, and that drive may well be worth it.   It appears it is her way or the highway.  She is truly imposing her will on your life without giving you options. 

    Can you at least seek out a second opinion on treatment, surgery?

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  • pitanga
    pitanga Member Posts: 596
    edited May 2009

    Sian, I think it would be highly unprofessional of your oncologist not to refer you to someone else for a second opinion. I opted against prophylactic oopherectomy myself, but it was an uphill battle and in the process I saw many different doctors and learned that it is a pretty standard suggestion for BC patients. Where on earth is she coming from?

    Some doctors just feel threated when patients become informed and involved in planning treatment. I just had a run-in with the pathologist who analyzed the material from my mastectomy. He did not comment on whether there was lymphovascular invasion, nor did he give any idea of the relative proportions of invasive cancer vs. DCIS. I asked my surgeon to request a re-analysis and she obliged, but the pathologist refused point-blank to say anything more. He is the head of his department and is used to calling the shots as he sees fit, with no lip from anyone. So, I am taking my slides elsewhere.

    Your situation, being so far away from other doctors, sounds difficult, but these are important issues... My very best wishes to you indeciding how to proceeed.

    Lisa

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  • sian
    sian Member Posts: 23
    edited May 2009

    Hi All

    I hope you are all well.  I'm sorry I took so long to post back but i've been flat out the past few days.

    Thank you all for your support, it is difficult when Oncologists are single minded and I'm quite stubborn so it will always be a battle.  I have decided to take the scenic route and I have applied to the records department for copies of all my BC medical records and images, then I can refer myself to whoever I want.  I wrote to her to explain my decision, and asked her if I can have the results/reorts sent to her for comment.  I want to involve her in my care as I value her opinion, but I will have some say over what is happening to me.

    Carol

    With regards to the cyberknife, I have written to a couple of centres and when my records arrive I will send them for evaluation, I just need to know what my options are, or are not!  I dont want to spend all my time wondering wether I could have had cyberknife and if it would have worked for me but I was too timid to persue it.  I have found a centre in Atlanta, a wellstar centre that did a study of 5 women with inoperable stage 3 reccurrence, following treatment they were all NED at 12 months and counting.  I have written to them and hope to get a reply this week.  Regarding the Ooph, she has always refused.  I asked her on day 1 when I was initially diagnosed, I had a gut feeling.  Then I asked he at 2 years when she stopped the Zoladex, it was a no.  Then I asked her at 3.5 years when my periods came back, this time it was a no in writing.  Then I went down the gyn rout via the GP requesting a prophilactic ooph, they got up in arms about my periods coming back after 3.5 years, did a load of tests, all OK, then said they would not reccomend a prophylactic ooph without the support of my Onc.  This has kind of been on going, the Gyn was great though, and said if I wanted to take it further in the future to ask to see him.  I intend to access him via the GP.  He also commented interestingly that he thought it unusual that he has never received a referral for an oopherectomy from her to date (and they have both been working there a long time).

    PS Appart from my tumor, now asymptomatic I am in great health. 

    Marsha

    I hope you are well, how are you doing on the Zoladex and Femora?  Can I ask you what your onc said about giving primary hormone therapy when we have already failed on tamoxifen.  I suggested that a recent study showed that ILC may not respond so well to Tamox due possibly to cholestorol inhibiting uptake, she said it was rubbish, and that Tamoxifen is particularly good for ILC.  I then asked her why, if I had already failed on Hormone therapy, she was now reccomending more as my primary treatment.  She said I can't proove the tumor was there before I stopped the tamoxifen, despite the fact I was symptomatic since last August between Sept and DecI attended the GP 4 times and only stopped the Tamox in Dec.  If we failed on Tamoxifen, does that mean we will fail on Femora?  What did your Onc say about it?  

    Lisa

    Sorry to hear you are having similar problems with an obstructive Pathologist, WHO DO THE THINK THE ARE!!!!  I'm glad you sorted it out.  It may be in the end I will have to change oncologists, but for now I am going to keep as well informed as I can, mainly thanks to all of you, who invariably know more than my Doctors, I'm going to keep her in the loop whatever I decide to do, take her advice when I think its good, carry on suggesting things I think we should include in my treatment options, and hope, eventually that she will come around to working co-operatively.

    Can I ask you Lisa, why were you opposed to an oopherectomy, I guess I have always persued it so fervently, I never considered it may not be the best thing?  What were your reasons for declining? 

    Thank you all for taking the time to read this and to reply to my posts, your support has meant everything to me, and If it wasnt for you all I would be accepting my lot quietly, you have all given me the information and the courage to make a stand.

    A big thank you Hug, and all my best wishes

    Jane 

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  • bethaib
    bethaib Member Posts: 125
    edited May 2009

    sian

    I am from central New York..we also have the cyberknife. This is the link to the center I use:

    www.hoacny.com

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  • PT6
    PT6 Member Posts: 76
    edited June 2009

    I had cyberknife surgery for a pituitary tumor 2 years ago. Here is the URL for a very useful forum:

    http://www.cyberknife.com/forum.aspx

    I'm not sure how they legally do this but you can post a question on the the appropriate forum and an physician familiar with cyberknife answers. My questions were usually answered by the next day.

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