3rd recurrence - limited options

4timer · January 2012

Biopsy followed by mastectomy, July, 1984. Recurrence in summer 1994 in 2nd layer of pectoralis major muscle. 2004 recurrence side chest wall. current recurrence diagnosed December 2011 in media chest wall following surgery Dec 7, 2011. Having had chemo , radiation and also Iridium implant with previous recurrences, I now have only a minimum of radiation available in the left chest area, and at age 83 (this week), oncologist is questioning chemo at this time, since surgeon is hopeful they

have gotten it all by scraping at ribs. I am to see the Research Dept head at Univ of Tucson research Clinic for additional opinion and input for treatment. Am concerned about the proximity to lungs, heart and ribs and want more information regarding options. ..am having new testing of ER,.PR and Her2 to be sure this cancer tests same as previous one which was triple Neg.

Am interested in hearing from anyone who has had recurrences this distance apart and treatment options given them.

*edited to remove member's private email address.

Racy · January 2012

Sorry I can't help but want you to know that I read your post and am sorry you are in this position. It's good that you are seeking expert advice and getting the pathology tested. Will you be having other scans?

I hope you don't need any more treatment.

bak94 · January 2012

So sorry you are going through this again. I have not been in your situation but hopefully someone can help you out. Thinking of you.

Hope60 · January 2012

So sorry you are in this position again. I haven't been in this situation and have no words of wisdom to offer, but I wanted to wish you the best. Hopefully, the surgery got it all and you will not need more treatment. Will be thinking of you.

KeepingFaith69 · January 2012

So sorry to hear that you have had a recurrence. Sending you ((HUGS)) and praying that surgery got the lurgies and that will be all for you. You have already been through too much.

Nichola · January 2012

Dear 4Timer,

So sorry to hear you are going through this yet again. My situation is similar, but not the same. I had multifocal IDC x 3 tumors followed my mastectomy in 2005, then a multiple recurrence in the skin of my reconstruction in 2007, then a chest wall recurrence in 2010...

What I can tell you is that i went to the Marsden which is the best Cancer hospital in the UK for a second opinion and they said that although I still have a high chance of mets, it may well just keep recurring locally or indeed, never recur again! The interesting thing was that they said that they were giving this opinion based on how far apart each dx was. Yours have been far more spaced than mine...

I remember being worried also about the proximity to my heart and lungs, both in terms of the tumour spread and the radiotherapy...but I would guess that they would only be able to offer targetted radiotherapy as you have had it before. (From what I have read, damage to the lungs and heart is more of a risk with left sided radiotherapy, but I believe it is relatively a small risk). The "chest wall" tumour being close to your lungs/heart ....? Well, in my book, I've learnt that that is something that's in the lap of the God!

Factors as to whether the cancer has changed grade or hormone sensitivity will also determine treatment options and perceived outcome as will the size of the tumour(s).

Sending you much love and luck...

N x

Nichola · January 2012

Dear 4Timer,

So sorry to hear you are going through this yet again. My situation is similar, but not the same. I had multifocal IDC x 3 tumors followed my mastectomy in 2005, then a multiple recurrence in the skin of my reconstruction in 2007, then a chest wall recurrence in 2010...

What I can tell you is that i went to the Marsden which is the best Cancer hospital in the UK for a second opinion and they said that although I still have a high chance of mets, it may well just keep recurring locally or indeed, never recur again! The interesting thing was that they said that they were giving this opinion based on how far apart each dx was. Yours have been far more spaced than mine...

I remember being worried also about the proximity to my heart and lungs, both in terms of the tumour spread and the radiotherapy...but I would guess that they would only be able to offer targetted radiotherapy as you have had it before. (From what I have read, damage to the lungs and heart is more of a risk with left sided radiotherapy, but I believe it is relatively a small risk). The "chest wall" tumour being close to your lungs/heart ....? Well, in my book, I've learnt that that is something that's in the lap of the God!

Factors as to whether the cancer has changed grade or hormone sensitivity will also determine treatment options and perceived outcome as will the size of the tumour(s).

Sending you much love and luck...

N x

lollypop59 · January 2012

hi nichola i have been reading thar you have 3 reccurances since 2004, i was dx sept 2010, and i have had 2 reccurrances so far last time it was four nodules last sept had them removed and then no treeatment needed, then now a few more nodules appeared in the skin again, plus a a small lump have appeared in the muscle and the top by my collar bone i done know what it is i have had it removed waiting for the results, i do have ibc which is high risk of reccurrance what part of the uk you love i live in barry south wales, but i am from london.

lollypop59 · February 2012

hi nichola,

i was told yesterday that i have a chest wall reccurance as well as the nodules again i will be having chemo in a few weeks then surgery the tummy tuck one i think, i am so disheartened, i hope you are feeling well x

edwards750 · February 2012

Wow you are really a trooper. That many recurrences and you sound so strong and courageous. I cant help you either unfortunately except to send prayers your way. Of course it is up to you and your doctors but I am not sure if I had gone through what you have I would want to subject myself to more treatment. Obviously it depends on what happens if you dont. Hope you dont have to and keep us posted. diane

lollypop59 · February 2012

hi edward750,

hi i will be starting chemo which is taxol, in a couple of weeks for three months i think then more surgery after, i might sound very brave but i am terrified deep down, but sometime i think what is the point of worrying over somthing that i have no control over.

lollypop59 · March 2012

HI EDWARD 750,

hope you are well just to say my taol started three weeks ago and my herceptin, started last thurs for every three weeks taxol every week, i am feeling ok and well and hoping it stays that way,

best wishes lorraine

lollypop59 · March 2012

sorry edward 750,

i forgot to mention i have mets to the lungs aswell which did not surprize me, i will be in tratment in definate with breaks in between.

dlb823 · March 2012

4timer, hopefully the university will have a treatment option for you. I have not been in your situation, but I think if I was -- with possibly limited conventional treatment options available -- I would seek out an integrative oncology specialist, to see if there are any other treatments besides surgery/chemo/rads that might be helpful to you now. Places like The Block Institute in Chicago, or Cancer Treatment Centers of America (there's one on the West side of Phoenix), offer many things in addition to conventional therapies. I would never suggest substituting them for conventional treatment, but I firmly believe in them to support conventional treatment, and some of them (i.e. diet, hormone balancing, nutrient infusions, etc.) might be worth looking into for your unique situation. Here are a few links that might be helpful:

http://blockmd.com/

http://www.cancercenter.com/

http://www.integrativeonc.org/

Good luck, and please keep us posted on your situation! (((Hugs))) Deanna