Question on recurrence for you 'experts'

Methusala · July 2007

Dr. told me I would be a good candidate for having a preventive mastectomy on the left side as well as my cancerous right side. I said 'no way'. If it's not broke, don't fix it. It's not like we're not going to be watching it now, right? That's exactly what I said to him. I go back to see him tomorrow. Did I answer too hastily? I see absolutely no point in losing my left breast as well. But, it's 'me' so I may be a bit biased.
What are your ladies' opinions?

Family History:
Me: breast cancer (37)
My sister (died 35 BC)
Our father (died of throat cancer that spread to his lungs)
HIS^ sister (died of breast cancer in her 50's)
Their ^ brother died of bone cancer
^this brother had 6 kids. 4 of them have died of cancer.
of the 4, two are girls, BOTH had breast cancer, one is still fighting, the other died (the one that died also had ovarian cancer)

get the picture here? good grief...
bad genes, eh??

aliciamaris · July 2007

I guess that the issue would be your med team's analysis of percent chance of a new primary based on your family hx. The problem I see with the 'we're watching it closely' stance is that for young women with dense breasts, it's hard to see tumors, particularly small ones. By the time it's found, the chance of metastasis increases. It would be a hard decision to make - can you get a second opinion?

Alicia

CalGal · July 2007

GMG -

I can understand you not wanting to lose the "healthy" breast along with the other one ...

In reading your family info, with you and your sis being young/pre-menopausal with bc, and two of your first cousins also having had bc and oc young, with one passing ... I can't help but to think the chances are very high of your family being positive for one of the BRCA mutations.

My big question to you is - Have you considered having the BRCA test?! That might help you with your decision re: mast or bi-lat mast.

If you were positive, it might make sense to you to have a bi-lat mast and recon as particularly with BRCA1, a new primary in the opposite breast is a high risk. It's certainly "easier" to get a "matched set" if they both are reconstructed at the same time, using the same method.

Let me back up and say, that on my initial bc dx (invasive on one side, DCIS on the other), I was thrilled that I could have bi-lat lump's, SNB and rad'tn, rather than a mast and chemo ... 15 mos later, 2 wks after a miscarriage, I was dx'd with recurr bc, mets to the liver and unrelated kidney cancer ...

They left the recurr breast tumor in as a "marker" while I did chemo. I've done unbelievably well, having just celebrated my 1 yr anniverary of being NED for bc and 4 mos NED for kidney cancer!

After the recurr, I found out I'm pos for BRCA1. Now, it's not just the mets, but I have to worry about a new primary as well as ovarian cancer. Being Stage IV, I've been told that the "horse is out of the barn" re: getting a bi-lat mast and recon at this point. But, I intend to (but among my 3 consults with plastic surgeons, it was suggested that I wait one year post-chemo for my body to fully recover ... and the unsaid part, was to see if I'm still NED). I'm doing everything I can to beat this!

An outstanding book on mast & recon is "The Breast Reconstruction Guidebook, Issues and Answers from Research to Recovery" by Kathy Steligo.

I'm also a member of FORCE - for those BRCA1, BRCA2, with a family hist of bc/oc and otherwise at high risk. I was shocked at the number of women our age (30s & 40s), who have had bi-lat mast & recon and/or ooph as preventative measures! You might want to check out their website at www.facingourrisk.org for additional info and support.

CalGal

Beesie · July 2007

I agree with CalGal; my advice would be that you get yourself tested for the BRCA genetic mutation. I completely understand your desire to not remove your healthy breast, but to make this decision, I think you should have as much info as possible about your risk level.

If it turns out that you have the genetic mutation, then you will know that you have a high risk of getting BC again; the genetic counseller will be able quantify this risk for you. On the other hand, if you don't have the gene, the best situation for you would be if your cousin was also tested, as a way to find out if the genetic mutation is in your family. If it's in your family but you don't have it, that would mean that your present BC is unconnected to the family history and you aren't at substantially higher risk of getting BC again (although anyone who's had it once is at higher risk than the average women). If both you and your cousin don't have the genetic mutation, then it's more likely that there is something undiscovered that is causing the high propensity for BC in your family.

A genetic counseller can explain this much better than I can and I'd suggest that tomorrow you ask your doctor to refer you to a genetic counseller. Your surgeon should not push you for a decision on the prophylactic mastectomy - it can be done later, if necessary.

As CalGal suggested, you may want to check out the Facing Our Risk website for more info on genetically based cancer: http://www.facingourrisk.org/

LisaSDCA · July 2007

I agree 100% with Beesie and CalGal - ask for a genetics referral tomorrow. You cannot make an informed decision without as much information as possible, and BRCA status is highly suspect in this case.

Lisa

JerseyGemini · July 2007

Hi --

I had stage 1 at age 30 and was adamant they take both breasts. I didn't bother with the gene testing at that time (4.5 years ago) because I knew I wanted them both gone. I was lucky enough to catch mine at stage 1 (or so I thought) but there was no guarantee catching it that early next time...and only being 30 there was alot of years left to tempt "next time". I also wanted both breasts to match...4.5 years later you wouldn't even know they were reconstructed...they look amazing.

My stage 1 cancer came back this year to my rib so I am stage IV anyway. My mom and grandma died of bc so I was watched like a hawk...mammograms since age 23(!) and exams 2x per year. It still was invasive by the time they found it. My biggest regret is not having the gene test in my 20s and having preventive mastectomies before the cancer even came.

I obviously lean toward the aggressive and we all have to do what we feel comfortable with but I wanted you to have all points of view.

Tess

CalGal · July 2007

Hi Tess -

Wow! You were so pro-active, mamm's since 23, exams twice a year at that young age (I'm sure you had to fight for that!) and then a bi-lat mast after being Stage I at 30 ... You were very aggressive and on top of it ... and still, it comes back with mets ...

How old were your mom and grandma when they were dx'd with bc?

Your story strikes a chord with me, since my mom and maternal grandma also had bc, they were both pre-menopausal too ... and I did NOT go after the bc as aggressively as I could have until I was dx'd with a recurr and mets ...

I did NOT want my mom to get tested when she brought it up, as at that time, I was single, working out 5x/wk, hoping to get married and have kids - I would not have had pbm's ...

In my earlier post on this thread, I mentioned that I was glad to get by with bi-lat lump's when first dx'd ... and while I got to Stage IV 15 mos after my initial dx (2.2 cm tumor, SNB all clear), there are some "what ifs", but I really try not to go there ... and hearing your story makes me think that even if I had had a mast at orig dx, that's still no guarantee ...

Since it sounds like you haven't had the BRCA test, I'm very curious as to whether you are a triple negative (and thus much more likely to be BRCA1) or not. 75-80% of BRCA1's are trip negs; while 75-80% of BRCA2's are hormone responsive.

I'm a BRCA1, trip neg. It wasn't until I found out I was BRCA1, that I realized how high the risk is for oc as well as bc ... but neither mom nor grandma had oc. My mom died after a 13 yr run vs bc at age 59; but my grandma died last year at 93. So, I sure hope I take after grandma!

Best to you,

CalGal

justaly · July 2007

I was the opposite since day 1 of dx I wanted to have both breasts removed and my doc's talked me out of it, after original mastectomy I kept bugging my onc about it and he finally said to do BRCA test first, which came back postive. My mom is a 14 year survivor, she was clean for 7 years orginally then had a new primary in the other breast. But none of her doctors ever mentioned the genetic testing to her for my sake and that makes me mad.

If I were you I would do BRCA testing just for the sake of knowing for sure, even though it didn't really work for me (I ended up with lung mets) I do not regret it. And if you get reconstruction (make sure you get a great plastic surgeon) you can have nice new perky breasts just the size you want them.

southernchick · July 2007

I felt the same way as you at first. I was dx with IDC and had lumpectomy w/2 reexcisions and they could never get clean margins. I am stage one with no lymph node involvement. I didn't want to remove the healthy breast either. But my dr. made 2 very good points...One, since I am under 50 and each year the risk of reoccurance increases...that is a lot of years of risk. Also, i had a mammo the year before which was clear and now my tumor was almost 2 cm. She said that is concerning. Also, looking back on what I have gone through so far, I just don't think I can go through it again. My bi-lateral mastectomy is scheduled for 7/17. Since I made the decision to do both, it seems a huge weight was lifted off my shoulders. After weeks of indecision, I haven't thought twice about it since I made the decision to do a bilateral. Good luck whatever you decide.

southernchick · July 2007

Jersey, how did they find the cancer in your rib? Did you have any symptoms? I think a lot about whether or not it will pop up somewhere else down the line.

tooyoungtohavebc · July 2007

I think it is so interesting how different the treatments are based on doctors and their sophistication and experience with treatment. I live in North California where I think the treatment is more progressive. I was diagnosed with stage 3 IDC in 2005. I had lumpectomy with node removal. I wanted a mastectomy and both surgeon and ONC said I did not need it based on breast size and tumor size after chemo. they never even mentioned my other breast. yet I see so many women on here in stage 2 who have the bi lateral. From what I was told, mastectomy does not increase survival rate so that is why they recommended lumpectomy for me. I did not have any family history, but I will say that in the last month I found some lumps by my collar bone and ONC thinks it has come back. Still not confirmed as I am going through testing. Stay tuned! honestly I think it is a crap shoot. Just depends how cancer reacts in your body. Do what your gut tells you! Good luck!

rubytuesday · July 2007

I totally agree with you that it is a crap shoot! You have to do what you are comfortable with and the knowledge that you have in the PRESENT and FOLLOW YOUR HEART! I hope your lumps turn out to be totally benign! Let us know what happens. Best wishes!

JerseyGemini · July 2007

Hi --

Calgal -- My mom was 46 when diagnosed, 51 when she died. My grandmother was 70 when diagnosed, 79 when she died. I don't really know the specifics of either since I was so young with my grandmother (she died when I was 16) and my mom really kept us sheltered from the details. Looking back I contributed with complete head in the sand while she was sick...that I regret. I was 19 when she was diagnosed and just turned 24 when she died. Talking to her onc. and surgeon (who is my surgeon), she had a large tumor and I think already had skin involvement...but negative nodes, go figure. My first cousin died of rhabdomyosarcom at age 26 a week before my mom's diagnosis. In talking to other relatives, friends, she had the lump and put off going to the doctor b/c of what my cousin and aunt (her sister) was going through. My aunt had lost her husband the year before...so the family had quite the rough patch. We can't seem to escape it.

I was hormone positive at diagnosis...ER+100% and PR-. I was on tamoxifen and monthly lupron shots when the mets were found. The bone biopsy from my rib came back ER+92%/PR+82% so I hope hope hope the Femara works. My onc. said instead of thinking tamoxifen failed, think that it worked for four years.

Southernchick - I was cleaning out my mom's old room (Irony) and hurt my ribs throwing boxes and bags of books into a 6ft. dumpster (I'm 5 ft. tall). Thought I had torn cartilage, went to chiropractor who did x-ray which came back fine. Onc. nurse said ribs take a long time to heal..she also did a xray that was negative. Then the pain got better 8 weeks later (like any rib injury would). I happen to have a surgeon follow up, mentioned ribs and yada yada yada, 4 scans and 1 biopsy later, met to rib was confirmed. By the time the biopsy came I had zero pain..i had trouble even pinpointing the spot.

It's really all a crap shoot. I had the double and it came back. I am still 100% happy I had the double. My reconstruction is amazing..doctors question that I even had a double mastectomy. So medically I am not worried about a second primary and cosmetically I have a stellar rack :-)

Tess

RoseLady · July 2007

Hi GMG, I can appreciate your predicament but I've learned with BC nothing is predictable. I had Stage I BC in 2001, had rad mast with Fram Flap reconstruction. This past March, I was diagnosed with Metastic breast cancer, Stage IV, in my sternum which had spread into the tissue of the reconstructed breast. I also had "hot spots" in my thoracic spine and my left lung. My mom had bc in 1961 but it was pre-menapausal, mine was post menapausal. Emory Hospital in Atlanta, GA didn't recommend the BRAC because there was only 2 people in my family history with bc. Cancer has a mind of its own, it just goes where it wants to go. Since my surgery in 2001, I've had mammo every 3-6 months, have had 3 biopsies and all negative. I had chest pain for over a year, treated by 3 doc for costochondritis (inflamation of the cartlidge between the ribs and sternum) and finally went to ER for the pain, and the cancer was diagnosed by a simple chest x-ray. As I said, you just can't predict cancer.

Indigoblue · August 2007

I just listed the long, long, long list of hereditary diseases which run in our family, of which cancer dominates, along with some rare disorders and various diseases which maternal and paternal sides have passed away from. The list is so long, this reply was knocked off.
Happens a lot because slow typing and peripheral neuropathy and chemobrain...

I call the list laughable and tragic, fill in the bubble: choose your poison lol.

I also lost my mother and father, grandparents, uncles, aunts, many first cousins to cancer. My mother had a lump removed at age 42, in the early 1960's; who knows what it was; I was too young. Her sister had breast cancer at 39, and died from heart disease while having surgery for the cancer. They both had uterine/cervical cancer as well.
20 years later mother found a red ring around her breast which turned out to be Inflammatory Breast Cancer. The treatments were barbaric, her immune system broke down.
3 l/2 years later she passed away. Her mother and grandmother also had breast cancer on maternal and paternal sides. Dad had skin cancer which spread to everywhere.
So, at a very young age, I decided I wanted both breasts and uterus and ovaries removed. Docs and insurance said "no way", but it always haunted me, knowing the incredible numbers and types of cancer.

That's why I believe there is another enzyme missing, unknown, which science and medical visionaries have yet to find.

About the mets; what a headache...I have so many aches and pains, I can barely feel my breasts doing a self exam. The techs poked nerves in my hand, and the tatoo lady poked a nerve in my rib. There was also a mystery broken rib found on the bone scan; which was not there before surgery.

The docs say I am NED for now, but I don't think they really know; they do a lot of guesswork, and why spend life, however long you have worrying about recurrance when the tests cause fear, anxiety, and aren't particularly accurate until there is a mets?

Hope you all stay well. Love you ladies so, thanks for being here!

Indi

angelica23578 · October 2007

Can someone tell me how your mets to the lung was diagnosed? I'm Stage IV, had a 6mm spot on my lung, and surgeon said my bc had spread--sweet talker that he is. My oncologist is not so sure. I did have lung cancer in 1999, had a lobectemy and all is well.

Question on recurrence for you 'experts'

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