How do you choose which form of reconstruction is right for you?

Rubiayat

I'm sorry to hear your appointment was pushed back Ladybird. The waiting is the hardest! My surgery has been scheduled for May 6 (I'm right after you Lemon68!), but I don't want the type of reconstruction we talked about. I have left three messages with my PS's assistant over the last 8 days and still no call back. It is maddening! I don't think it will be an issue to switch from a DIEP to a TUG (PS is a very experienced microvascular surgeon), but I would like to know for certain because if it is I am back to square one and will need to find a new PS.

DiveCat

Ladybird, 

You had brought up a few days ago this:

What I am noticing when looking at the notes on many of the ladies on
this website is how many of them have chosen to have a double Mx for
"prophylactic" reasons. I am wondering if this is a USA thing, also the
addition of the ovary removal - something I'd never heard of before -
and also that so many of you have had Mx with a tumour of about 1cm in
size in a large breast. I have a 32A bust and the biggest my tumour got
in total ( including the satellites) was 4.2cm and I still have had no
surgery. It seems to me that the medical world in the states is all for
surgery and that the Docs really put the frighteners on you to go for
maximum rather than minimum surgery. I really don't feel it's like that
over here in the UK. Certainly not with me, anyway

I am Canadian, but am someone who does not have a cancer diagnosis, and is having a double mastectomy for prophylactic reasons due to being high risk for a primary cancer (familial, as in at least 3 generations of women directly before me have had breast cancer...usually pre-menopausal and very aggressive and deadly). In my case no medical providers put frighteners on me, this was something I researched and discussed for several years before deciding this last year or so I was ready. I did find great support from my doctors, but there was most definitely no pressure from them in any fashion. This is definitely not a US thing either, though uptake for prophyactic mastectomies does vary across the world. For example, in the US the uptake for BRCA+ women is about 36%. In Israel is it more like 4%. In Canada it is 22%. In Norway it is 5%. There are not only medical factors at play, but also significant cultural factors, etc (this is a very good piece about some of the cultural and emotional issues with BRCA-testing and surgery in Israel http://www.nytimes.com/2013/11/27/health/in-israe...

There are other women on here who may choose a contralateral prophylactic mastectomy after diagnosis for other similar high risk conditions, such as BRCA+, family history, or having ILC/LCIS (because it is sneaky and more often found in other breast as well), or just overall being at higher risk of a new primary. For example, a recent Canadian study showed that women opting for double MX for a BRCA-related breast cancer were half as likely to die in 20 years than women who mastectomy of one breast.

Similar reasons can apply for an oopherectomy (being BRCA+, being ER+ and not wanting or being able to take AIs, etc). In some cases there can be very good reasons, not just obvious by looking at the diagnosis of cancer itself as described in the signature, for choosing MX or bilateral MX. Not to say that there is not a risk of overtreatment, there is, and many people do choose MX when perhaps a LX & rads would have been just as suitable, but there is most definitely a valid mental and emotional component for some women too. I do not think it is always necessarily fear based, but a need to feel that at least the tumour is gone, this has been the case for some women I know personally who chose MX.

I have seen statistics that do show that more women in the US DO choose a contralateral prophylactic MX after a cancer diagnosis (I believe it was close to 50%), and uptake in Canada was a little lower (closer to 25% I believe). I cannot remember what the stats were for UK, and I cannot remember where I found the info before.Again, not sure this is because there is pressure from surgeons. I see many women on here talk about how their surgeons have told them a uni is enough, but that they want the double for their own reasons.

An example is my mother had a 6+ cm ILC in her left breast that only could be removed via a modified radical MX (it was very close to/at chest wall), but she actually had a very hard time getting her surgeon to give her a prophylactic of the right breast, despite the fact her cancer was missed on mammograms and MRIs for who knows how long, that her mother, and two grandmothers had all had breast cancer rather early (and two of them died due to mets) and that often ILC shows up in the other breast as well. She did manage to get the contralateral (which showed pre-cancerous changes not found in pre-surgery imaging) but it was definitely at her urging, not her surgeon putting any frighteners at her. Similarly, she has been on hormonal therapy for about 8 years, and she has had pretty bad side effects from them. She has still stayed dedicated to them, but it has not been easy. She will be taken off them in another year or so. She is considering an oopherectomy at that time since any hormone production still happening in her ovaries (even if minimal) will no longer be countered; she was ER+ and is at high risk for recurrence (significant node involvement, etc).

(P.S. surgery won't "spread" the cancer....however, the cancer, if invasive, may have already spread at the time of the surgery though it may not be observable yet. The purpose of surgery is not to "cure" the systemic nature of the cancer but to remove the primary site)

sarahjane7374

I don't feel like my surgeon put a frightener on me either.  Yes, my surgery was technically prophylactic.  Meaning I did not end up with a BC diagnosis after the pathology came back.  But there was a reasonable amount of concern going in that I would end up with a dx afterwards (hence the SNB), and even if not - I had a whole bunch of other issues going on in there.  I was advised that it wasn't going to be possible to surgically remove all the masses I had and leave me with an acceptable cosmetic result.  Besides, there were new masses forming constantly and growing fast.  My options were - continue status quo or bilateral mx.  I chose bilateral mx, got my life back, and don't regret it at all.  Prophylactic = yes.  Unnecessary or excessive = absolutely not.

Ladybird-dancer

Sarah Jane and Dive Cat

Good for you!  I'm pleased that your decisions were right for you.  Clearly if there is genetic influence going on, that is a factor to be taken extremely seriously, but that isn't what I was referring to, and I wasn't commenting on individual cases which clearly I can know nothing about.  The only info I read is the technical notes underneath the posts.

If you look at all my posts, I fully acknowledge that any decisions any of us make regarding our BC are very personal, however there are cases where there is excessive pressure put on women, when actually there is another course of action which would be less invasive and also safe - that is certainly my experience and I know I'm not alone in thinking that.

It's all about the right to choose what you want to do with your body, but without outside pressure and also armed with all the facts, which sadly many orthodox Docs don't necessarily have.  Care and treatment in the future will become more and more personalised rather than the conveyor belt it often seems to be at present.

I disagree with your bracketed comment, surgery certainly has the potential to make cancer appear elsewhere in the body - there is a lot written about this and talk to Onco-nurses and they will acknowledge that.

Best wishes to us all.

Victoria55

Hello! My name is Victoria!

       I had a double mastectomy, Just had implants put in. I'm very happy with the way I look! Please! if you would like any information don't hesitate to ask me. Going back to work tomorrow after one week off.

Ladybird-dancer

Bloody hell!  That's amazing!  I'm so pleased for you.

Scars?  Where?  How big?  Pain? Teardrop shape or something else?  Presumably immediate recon?

Implants are defo my 2nd choice if I can't get satisfactory AFT.

Momine

Ladybird, about going for "maximum surgery." No doc put the "frighterners" on me. I had a large tumor in my right breast that was situated in such a way that an MX was necessary on that breast. This according to 2 separate surgeons. The surgeon I ended up using is among the very best where I am and also a research doc.

My other breast showed clean and clear on all the scans. However, I was told that the follow-up care needed was mammo or U/S every 3 months, and biopsies of anything suspicious found on screening. I know myself well enough to know that this kind of constant prodding and poking of the remaining boob would drive me completely around the bend. Besides, screening is bad at seeing ILC.

My surgeon explained to me that according to current medical wisdom there was no reason to remove my "good" breast, but he understood my feelings about the follow-up and was willing to remove it for me. We had several discussions about this, including the sneaky aspect of lobular. 

After the surgery, the path report showed that my "good" breast was full of various pre-cancerous conditions, including LCIS. 

Momine

Divecat, thanks for your post. My story is very like your mother's.

Momine

"I disagree with your bracketed comment, surgery certainly has the potential to make cancer appear elsewhere in the body - there is a lot written about this and talk to Onco-nurses and they will acknowledge that." 

Nope, that is a myth. Even onco-nurses sometimes believe things that are not true.

DiveCat

Thanks Momine for addressing the "spread" issue. I suspect the "lot written about this" is from certain groups with their own bias; in any event it lacks any actual properly researched evidentiary foundation. Breast cancer surgery does not cause recurrence, period. Very few onco-nurses would be specialists in this area in any event. Being an onco-nurse does not make one an oncologist, breast cancer specialist,  breast surgeon, expert cancer researcher, etc. However, if we are sharing anecdotes I have several family & friends who are in nursing, including in oncology, and not one of them believes that myth! 

Momine

Divecat, I checked the ACS site, and they say that in some rare cases with certain cancers (not breast) there is a small risk of spread during biopsy. 

They also say:

"One common myth about cancer is that it will spread if it’s exposed to air during surgery. Some people may believe this because they often feel worse after surgery than they did before. But it’s normal to feel this way when beginning to recover from any surgery. Another reason people may believe this is because during surgery the doctor may find more cancer than was expected from scans and x-rays. This can happen, but it’s not because of the surgery – the cancer was already there – it just didn’t show up on the tests that were done. Cancer does not spread because it has been exposed to air. If you delay or refuse surgery because of this myth, then you may be harming yourself by passing up effective treatment." http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/surgery/surgery-surgery-and-cancer-spread

Rubiayat

There are scientific studies that suggest surgery can increase the risk of metastasis. Below are some snippets from an article on this subject. They do note at the end that surgery still provides the best chance of disease free survival. This article also discusses supplements that can support your body to counteract the effects below.

A growing body of scientific evidence has revealed that cancer surgery can increase the risk of metastasis (van der Bij 2009). A complicated sequence of events must occur in order for cancer to
metastasize (van der Bij 2009). Isolated cancer cells that break away
from the primary tumor must first breach the connective tissue
immediately surrounding the cancer. Once this occurs, the cancer cell
enters a blood or lymphatic vessel. To gain entry, the cancer cell must
secrete enzymes that degrade the basement membrane of the blood vessel
(Wagennar-Miller 2004).

Cancer surgery can produce an alternate route of metastasis that
bypasses natural barriers. During cancer surgery, the removal of the
tumor almost always disrupts the structural integrity of the tumor
and/or blood vessels feeding the tumor. This can lead to either an
unobstructed dispersal of cancer cells into the bloodstream or seeding
of these cancer cells directly into the chest or abdomen (Ben-Eliyahu
2003; Yamaguchi 2000; Da Costa 1998; Shakhar 2003).This surgery-induced
“alternate route” can greatly simplify the path to metastasis.

One mechanism by which surgery increases the risk of metastasis is by enhancing cancer cell adhesion (Dowdall 2002).

The likelihood of surgery-induced metastasis requires the immune system
to be highly active and vigilant in seeking out and destroying renegade
cancer cells during the perioperative period (the time immediately
before, during, and after surgery). Numerous studies have documented
that cancer surgery results in a substantial reduction in NK cell
activity (Da Costa 1998; Shakhar 2003; McCulloch 1993; Rosenne 2007).

The primary tumor produces anti-angiogenic factors which serve to limit
the growth of metastatic cancer elsewhere in the body (Baum 2005;
Folkman 2003; Pinsolle 2000; Raymond 1998) by inhibiting the formation
of new blood vessels to potential sites of metastasis. Unfortunately,
the surgical removal of the primary cancer also results in the removal
of these anti-angiogenic factors, and the growth of metastasis is no
longer inhibited. With these restrictions lifted, it is now easier for
small sites of metastatic cancer to attract new blood vessels that
promote their growth (Goldfarb 2006-2007). Indeed, these concerns were
voiced by researchers who declared that “removal of the primary tumor
might eliminate a safeguard against angiogenesis and thus awaken dormant
micrometastasis [small sites of metastatic cancer]” (Shakhar 2003).

http://www.lef.org/protocols/cancer/cancer_surgery...

Momine

Rubiyat, none of those studies has shown a definitive causation, as far as I know. The last study I remember seeing on this concluded that "seeding" is rare and that even if it happens there is very little evidence of any such seeding progressing to cancer. 

Rubiayat

I hope so!!

lekker

I'm not a doctor but even I see some obvious issues with the abstract Rubiayat posted (I didn't google the whole article so I admit i could be missing something).  

One mechanism by which surgery increases the risk of metastasis is by enhancing cancer cell adhesion (Dowdall 2002).  ILC by definition lacks E-Cadherin expression which means it lacks cell-cell adhesion and it's one of the reasons it's so hard to detect as it doesn't always form a mass.  Even without cell-cell adhesion, it still finds a way to metastasize.

The primary tumor produces anti-angiogenic factors which serve to limit
the growth of metastatic cancer elsewhere in the body (Baum 2005;
Folkman 2003; Pinsolle 2000; Raymond 1998) by inhibiting the formation
of new blood vessels to potential sites of metastasis. Unfortunately,
the surgical removal of the primary cancer also results in the removal
of these anti-angiogenic factors, and the growth of metastasis is no
longer inhibited.  This is one of the reasons that oncologists used to refuse lumpectomies or mastectomies if a woman was diagnosed stage IV before initial surgery.  But several studies have shown that removal of the primary tumor actually increases survival - perhaps by lowering tumor load.  If the statement about the primary inhibiting growth in metastatic sites were universally true, stage IV women who still have their primary tumor(s) - and there are many - wouldn't progress yet at least 95% (of all stage IV women) eventually die of their disease.  

There have been several articles lately about the risks of morcellating fibroids and/or the uterus during a myomectomy/hysterectomy.  This is because in very rare cases, the mass that looked like a fibroid going into surgery was really a sarcoma, and slicing up a uterine sarcoma while still inside a patient drastically reduces overall survival (this is also the case for other sarcomas).  It's been difficult to find evidence of the harm of this practice because uterine sarcoma is so rare - about 6 in a million is the statistic I remember reading.  But breast cancer is not rare!  Hundreds of thousands of American women have surgery for breast cancer every single year - and the vast majority do not have a recurrence or metastasis.

Doctors do know that all cancers are not created equal.  I'm sure many of you have read about the concerns that mammograms are detecting small, indolent cancers that would never cause a real problem but we have to treat all of them because there's currently no way to tell which is which.  Even "invasive" cancers can fall into the harmless group, but again there's no way to tell until it's too late (you either die of something else or you find evidence of metastasis - even without the primary tumor growing).  Surgery is currently the only "cure" for breast cancer - if a tumor is removed before it metastasizes.  That is why doctors might seem eager to operate for breast cancer - because at the population level, it significantly improves survival.  I have an indolent ILC - They didn't test my ki67 but I was grade 1 by pathology and my oncotype was 13 which is clearly in the low group.  According to Genomic Health (creators of the OncotypeDX test) 9% of women with my tumor's score will be stage IV within 10 years IF they have surgery (and radiation if indicated) AND 5 years of tamoxifen.  I think that number doubles if you skip the tamoxifen.  I don't know what the number would be without surgery.  

Just for the record, my implants look great (not perfect) in and out of
clothes (the latter according to my husband) and I was fortunate that I
was a candidate for NASM and I didn't have major complications. Yes there are small scars, but there are also
scars on my left breast from the three large, benign masses that had
been removed over the years. I wasn't a candidate for DIEP at the time
of my BMX (sadly, I probably would be now) but if I had to do it over
again now, I would look into the PAP flap.

Final comment - none of this was written to suggest that all women should have surgery for breast cancer.  Yes, it is the standard of care for very good reasons, but every one is an individual and there may be many reasons why surgery is not chosen (indolent tumor, co-morbidities, etc).  I chose an aggressive surgical approach for reasons I have posted about before, but realize that what was right for me has nothing to do with what is right for someone else.   

Previvor101

thanks Lekker for that fantastic summary

Momine

Lekker, nice summary. To me, the bottom line is pretty simple. Even if there is a tiny risk of surgery somehow causing, through some intricate progression of mishaps, the cancer to metastasize, there is way better chance, in the vast majority of case, for the cancer to metastasize if left in place.

lemon68

Hi Ladybird

Sometimes no more surgery is the way to go. Lumpectomy Vs MX the survival rates seem to be the same. You are doing the right thing, taking your time and thinking though all of your options.

The waiting is the worst, for me it seems time passes so fast when I don't want it to and slow when I am waiting, right?

Its all scary but WE are brave, we already have proven that to ourselves. Hang in there Lady.. XO

DiveCat

lemon68...Ladybird said on first page, in response to Beesie, she has not had surgery at all (i.e no LX).  I remember as I found that surprising, as even surgeons who practice breast conservation will usually want to do an LX, but I reread it over a couple times she seemed quite clear she has not had any surgery since her diagnosis.

I agree LX (with rads, usually) in suitable situations has similar survival rates to MX, though.

lemon68

Thanks for clarifying that Divecat, that is certainly her choice. I didn't go back and read though all the posts, I was responding to one of her posts.

Ladybird-dancer

Thank you lemon, of the lovely avatar!

You seem to be the only one supporting me here, I am beginning to feel somewhat battered by the comments here particularly from certain individuals who seem to "know everything" i.e. I am clearly stupid and know nothing.

Dive cat is correct, I've had no surgery so far, and I started this forum because I feel it is an inevitability.  Choosing what type of surgery seems to be a bit like trying to buy a pot of white paint; "Yes, madam, would you like white, super white, brilliant white, gloss, emulsion, waterproof, washable????...." etc. So ,many choices, and even if one chooses the same as someone else, the result and experience can be so different for different individuals.  At the moment, LX is out of the question - too big a tumour in too small a breast.

Also, I am becoming - my mood goes in and out - fed up with not being able to get on with my life.  Living from one appt to the next, with differing levels of anxiety - has it grown?  has it shrunk?  is it the same? - and not knowing until my consultant gets out his U/S.  I take a raft of supplements in addition to the drug, which I can only imagine I will be able to reduce once I have surgery - which in turn will free me up and some of my hard earned income too!  Crikey they're expensive!!!  You may be encouraged to know that the Doc I take advice from re: supps mostly supplies USA brands, sometimes Canadian.

After two and a half years of being with a complete ***** of an arrogant consultant I changed last November to a consultant I feel I can trust and I certainly have a lovely rapport with - important to me.  Next appt 8th May.  Off on holiday at the end of this week, so it will be nice having someone else doing the cooking!  I'm sure most women world-wide can align themselves to that!  Then off for a week's intensive Mistletoe therapy in Scotland with my other fab Doctor, an Anthroposophically trained German - a real cutey - looks like George Clooney the younger................always helps!  So  from the end of this week I'll be away from the forum for 2 weeks - no computer on holiday, prob just as well.  No more criticism from other members - that'll be a relief.

Best wishes

Ladybird-dancer

Dive cat - how has the alloderm been?  I'm thinking of using that myself.  What does it mean when implants are said to be "permanent"?  Do they not all of them need changing within 10 years?  I have read many women were told that but things have gone well for them and they haven't had to do that, but is there a difference in the type of short- and long-life implants?  If so, what?

Many thnaks.

lemon68

Ladybird-

I am sorry your feeling that way, most really just want to help and do care. Its hard when we are only typing to each other, our emotions don't always come out the way we intend them to come out.

I really hadn't realized you had not yet done a lumpectomy or anything. So I am understanding the tumor is not growing and is dormant or are there satellites that are new? I know you are struggling to make a decision, it is no easy choice to make. I really think 2 things- 1. once you make your choice you are going to feel so much better! 2. Once you get it out of your breast and know its gone your mind will be more at ease. ILC is scary as I know you have read it can be sneaky. Is it routine in the UK to wait or is your doctor pushing you to make a choice? I see you are taking Tamoxifen, did you also do radiation?

I wonder if there is a cancer center in your area where you could talk to women that have done different things and can give you an honest opinion? If not check out the boards for those that have had implants or the various flaps, they are always happy to share experiences.

Rubiayat- Good luck on May 6th, I am starting to freak out a bit due to nervousness. I wish you an easy surgery and quick healing, I am sure you will be beautiful!

DiveCat

ladybird...I am still pre-surgery! It is on the 24th. I will let you know how the Alloderm is in time though. My PS really, really likes it. He will do implants without it in certain cases (though not one-step), but tells me Alloderm is really great for reshaping the IMF after the BS has kind of destroyed it, and is of course also a great internal sling.

Are you referring to my signature? The site automatically picks that when you choose "implants" in your surgery to I guess indicate that these are your long-term implants. But I am not doing TEs...they are going to put in the "permanent" implants at the same time as my MX.  They are not permanent of course in the sense they may never need replacing, but they are the ones I intend to live with for a very long time if all goes well.

These days there is no need to replace implants unless it is truly required...there is no "rule" of replacing in 10 years. Most manufacturers do have a 10-year warranty (for ruptures in certain circumstances) so some women like to replace by then to restart the warranty, but my own PS says only replace when needed (because why add surgery and risks otherwise?). This could be 15, 20, 25 years. Women do replace for other reasons though too much before they need to, like for a differnet size, shape, or implant type.

Rubiayat

Thanks lemon68! I am going just one day after you. I don't think it has really hit me yet what is about to come. Thursday I see my PS and the pre-op nurse - maybe it will sink in after that. I am making my lists and following the April surgery sisters - it is reassuring to hear how well everyone is doing. Having had three surgeries already, I was feeling very anxious a few weeks ago. I started listening to a guided imagery CD for surgery and it has helped reduce my anxiety quite a bit. Here it is if you are interested:

http://www.healthjourneys.com/kaiser/download/download_successfulSurgery.asp

I plan on listening to it during surgery:) I wish you all the best lemon68! I was reading your signature and it looks like your upcoming surgery has been a long time coming. Waiting is the hardest part and you have already put in a lot of time.

hopeful24

The key to that answer is "margins," removing a bit more than necessary. I learned this the hard way with cervical cancer.

I had a full hysterectomy for endometeiosis, not cancer. My pathology came back with cervical cancer cells and the doctor not only didn't follow-up, he didn't tell me!  I found out years later when I gyn suggested I have a pap test "just in case." Despite the fact that I had no cervix, there were cervical cancer cells left in the area where the cervix was removed.

I too have not heard about cancer popping up elsewhere after a mastectomy -- as long as clear margins are taken and no cancer is left.

DiveCat

hopeful24 said: "I too have not heard about cancer popping up elsewhere after a
mastectomy -- as long as clear margins are taken and no cancer is left."

Sorry, but this is just not the case, and reading these boards shows that clearly. Cancer indeed can and does pop up "elsewhere" after mastectomy/mastectomies. Local recurrences still happen (in scar tissue, etc) and distant recurrences (mets) can still happen (in bones, organs like the liver, lungs, brain). Even new primaries can happen after as mastectomy, as a mastectomy does not remove all breast tissue. 

Anyway, this is why there are Recurrence and Metsatasis forums...very few women (in general, or on those forums) are/were diagnosed Stage IV of the bat, and the majority have had distant recurrences months, years after a mastectomy...even if they had clear margins and surgeons "got it all". This can happen even if lymph nodes are clear in pathology. I have seen this in my own family, even in the days where they still did Halsted radical mastectomies.

No one can guarantee there is "no cancer left" when you have an invasive cancer (be it Stage I, II, III..). Good negative margins removes the "original tumour site", but it cannot get the horse back in the barn. A mastectomy is used to remove the primary cancer site, but it does not "treat" or prevent the risk of distant reccurence. It cannot remove cancer cells that have already "escaped" the local site.

I think it is very, very important that women deciding on treatment understand this, and understand that a mastectomy does not prevent distant recurrence. Other therapies, like chemotherapy and anti-hormonals, are used in patients to reduce the risk of distant recurrence as they work on the "total body" but even they are no guarantee...they just offer risk reduction in certain patients.

Ladybird-dancer

Thanks for this.

Sumi_teddy

hello.my mother is having a lump in UIQ at 2’o clock attached to the pectoralis muscle. From Trucut biopsy doctor said she’s having a rare type of a cancer . Once the pathology report it says ‘ possibilities are fibromatosis , phyllode, low grade sarcoma ‘. Also doctor said it its a low grade . Now waiting for the excision biopsy result .

Trucut biopsy reveals she’s having fascicles of spindle cells with bland nuclei extending from strophic skeletal muscles . No mitosis , necrosis or epithelial islands. CK7 negative and Vimentin positive

Is she having a tendency of getting a local recurrence of a distant metastasis ??

Sumi_teddy

hello.my mother is having a lump in UIQ at 2'o clock attached to the pectoralis muscle. From Trucut biopsy doctor said she's having a rare type of a cancer . Once the pathology report it says ' possibilities are fibromatosis , phyllode, low grade sarcoma '. Also doctor said it its a low grade . Now waiting for the excision biopsy result .

Trucut biopsy reveals she's having fascicles of spindle cells with bland nuclei extending from strophic skeletal muscles . No mitosis , necrosis or epithelial islands. CK7 negative and Vimentin positive

Is she having a tendency of getting a local recurrence of a distant metastasis ??