Under 35 with breast cancer and also BRCA2+: What to do?
Comments
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Deanna and others.. my apology if I may have used an offernsive language (e.g. referring to surgeons as butchers) forgive me for I am still in shock. Till 2 months ago I was an active healthy 34 year old single professional woman... then all of a sudden I am told I have DCIS grade 3 6cm wide stage 0 cancer, and I am BRCA2 positive. And the only cure I am told by 3 top surgeons (Stanford, UCSF, Good Sam hospital) is mastectomy.
I am just trying to see what are all the alternative options.
1) Mastectomy
2) Non-mainstream therapy: Gerson Therapy, Lorraine Day therapy.
3) Hyperthermia (as offered by Bicher cancer institute in Los Angeles, or UCSF).
I would ideally want #2 and #3 and avoid #1 at all costs. The only problem is I am told #3 is for advanced cancers, but no one (including the top surgeons) has been able to tell me WHY if Hyperthermia is good for advanced cancers, it is NOT good for DCIS which is far less invasive. Does anyone know?
Thank you,
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Homebody, you do not know me. You have no idea what I am going through. Do not judge and make comments such as why I have not thanked you or others. May you never have to experience what I am going through...
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AJ,
Bc and the shock of diagnosis don't always bring out the best in us. I believe there are threads on the alt forum that detail all kinds of alternative therapies. Just search under the one you're interested in and lots of info should come up. This is a tough time. Good luck to you.
Caryn -
AJ, your being 34 is only all the more reason to treat this in the most effective way possible. I would hate for you to save the boobs, but lose your life in the process.
The hyperthermia lady advertising on the web is a quack. Hyperthermia shows promise, but is nowhere near well enough developed at this point to be feasible as a regular treatment. At the moment it is only being used in limited ways on very advanced cancers, because other treatments are much better tested, whereas this is not.
Go to Stanford, talk to them, vent all your concerns and fears to them. That is what they are there for.
In your shoes, I would have a skin-sparing BMX and immediate reconstruction.
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They do not recommend MX because it is big business. They recommend it because it is the tried and tested treatment for your situation. Is it barbaric? Yes. Is it difficult to wrap your head around? Yes. Is it doable? Absolutely.
My surgeon maintains various professional accreditations, a staff, two offices, goes to all manner of conferences, sees patients till late at night and operates early in the morning. He always looks to cut as little as possible, yet maximize survival.
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Thanks Momine, I have talked to the good folks (surgeons) at Stanford and also UCSF. None of them knew much about hyperthermia except telling me that it is not used for DCIS. The folks at Bicher Institute however have said it can be. I am just trying to understand if hyperthermia can be used for advanced cancers, then why can it not be effective with DCIS which is far less aggressive and offers a far better alternative than mastectomy?
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AJ, because hyperthermia is still experimental, most likely and/or because it doesn't work very well or predictably. So, you are a young woman with a deadly disease. Any doctor who sees you is going to want to treat you with what he/she knows to be the most likely to work. In your case that is a mastectomy. As far as I am concerned, I was just happy that it was only boobs I had to amputate. A leg, arm or voice box would have been far more difficult.
Gerson therapy is snakeoil, pure and simple. There is evidence galore to ascertain this. Don't waste your time or money (speaking of big business, snake oil is definitely that, Gerson charges 1000 bucks a month for the various supplements).
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Thank you Momine... I have an appointment with the radiologist oncologist who is also the hyperthermia specialist at UCSF tomorrow to find out whether or not Hyperthermia works for DCIS and if not ask for reasons... I will post here of my findings afterwards...
One question I have with respect to mastectomy and re-construction afterwards.. how does it feel? i mean, I can not imagineto even start imagining how it would be with my breast gone and replaced with something that has no feelings or sensations. What also has torn me apart is the fact that I can never experience what it would be like to breast feed my child (whenver the time comes to get married, pregnant, etc.), and perhaps that is the part that I am seeking someone to tell me how to deal with and/or think of...
Thank you again,
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I came to bco tonight checking in on the reconstruction site due to having a reconstruction issue. I scrolled down, and for whatever reason happened here...as I rarely visit bco anymore. The whole surgery question made me read your post.
I understand the frustration of losing a breast...horrible. I had a dx of dcis and chose only a lumpectomy. One year later, dcis again, but multifocal...pretty much 1/4 of my breast was all dcis ... too large to measure the pathology said, 100% DCIS. I again elected to do a lumpectomy. I did not want a mastectomy. Two years later I was dx with invasive cancer with the HER2+++. I knew my breast had to go. I hated losing it. I don't think it matters what age you are, it's tough losing a breast. Since you have dcis it's possible you can have a nipple sparing mastectomy. A friend of mind had one and her breast looked natural and beautiful.
About surgery...it's a must. I've known alternative friends who chose not to do surgery and did the whole alternative route. Unforutnately within a short time they died. Not from bco...One a mom with a young son, who did all the alternative meds. I'm not into all conventional cancer medicine, but am absolutely convinced that surgery is the sure way to cut out cancer. The other thing, stay away from stress. I believe stress is the catyalist to cancer growth.
If I had to do it all over again, I would had done the mx at least the second time around.
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AJ, yes, losing your breast/breasts is a serious loss. Losing your life is worse. I strongly suggest that you ask for a consult with a psychologist who specializes in helping women with breast cancer. It is a lot to process and you are not the first to have these concerns.
I had an advanced cancer, so I did not have the possibility of immediate recon. I have now lived flat for 18 months, and I am really fine with it. To the point that I doubt I will ever go through the recon process. I wear fakes when out and about. The chest feels tight and mildly uncomfortable for a long time, but at this point mine is really ok and just feels like a normal part of my torso. Yes, you lose some sexual sensation, obviously, but I can live with that.
Skin-sparing MX with recon often ends up looking very, very good.
Hindsfeet, agree about the surgery. Getting the nasties outta there is a must. My great-grandmother had an MX in the 30s. Back then there was no chemo or rads as follow-up. You had the surgery and hoped for the best. She lived to a ripe old age and died from something other than cancer.
As far as The Bicher Institute, here is a link to a case against its doctor, which explains quite well the limitations of this treatment. The papers also show that Bicher has changed the name of his institute since that case, always a bad sign. http://www.casewatch.org/board/med/bicher/complaint.shtml
I also looked up UCSF hyperthermia department, which is obviously more serious than Bicher. Thing is, the treatment is in addition to chemo or rads to boost their effectiveness. It is not a freestanding treatment, as far as I can see. In your case, you would probably not need either chemo or rads, and so there would be no point in hyperthermal treatment.
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AJ I am so sorry you are having to deal with all this. It throws your whole world upside down. I have just read this whole thread & my ? is yes for now you have pure DCIS. Although they still don't know for sure what the other spot they found on your MRI truly is without a pathology slide. But as many have found here as well as ME that our pathology changed after I had my surgery. My DCIS was before surgery thought to be pure & less than 1 cm. After a lumpectomy it was 2.8 cm & had started to become invasive. Although I am 12 years older than you I too had to have BRCA testing. Mine thankfully was negative. But while I waitied I did much reading & consulted a personal (not BCO) friend who is BRCA+ & is the same age as me. When she was first DX with IDC 20 years ago they didn't do testing for BRCA. Then she was DX a second time with BC about 5 years later. She was then tested & found to be BRCA+ & had a DMX with a hyster. Both BC's were invasive & required Chemo. She is luckily still cancer free 15 years later (I believe that is ALL our goal)! But had she know about her BRCA+ at 20 years she would of opted for everything she had removed at that time instead of going through it again. I myself would have done the same. I even think about doing it if this beast comes back. As for size of DCIS my Sister -in-Law had extensive grade 1 7cm of pure DCIS. She only had a lumpectomy because she had very large triple D size breasts. She now is a size B. Had she been any smaller she would of had to have a MX. It was the only way they were able to do it. Although I still think she would not have minded having a DMX. Many who do alternative also do conventional treatment...at the very least have the surgery to remove the cancer.
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AJ123abc... I think what everyone is trying to tell you is that the DCIS isn't the problem - the BRCA2 being positive is the game changer. If you're sincere, you might want to educate yourself about what that means, and why the surgeons want to remove your breast to save your life. If you were BRCA2 negative, you probably could find some surgeon somewhere willing to do just a lumpectomy, despite the large area involved.
Either way, it's your life..so good luck with whatever choice you make.
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A good resource for BRCA+ folks is the FORCE website--www.facingourrisk.org--They are dedicated to all issues regarding hereditary breast and ovarian cancer--keep in mind that the BRCA mutation also esclates risk for ovarian, skin and other cancers--a genetic counselor or BRCA expert will be able to discuss with you what risks you are facing and options to mitigate. I too am BRCA2+ and FORCE has been a very valuable resource for me since i learned of my status. Best of luck to you!
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AJ ~ Although I'm older than you and understand that at your age this has to be more difficult on some levels, one thing that helped me a lot was to realize they are not "amputating" anything. What they are doing, assuming you have reconstruction, is removing diseased breast tissue and replacing it with other body tissue (like from your tummy) or the type of material used for breast enhancement. And while it does change breast sensation, the procedure isn't as horrible as you're imagining at this point.
Yes, it's extremely difficult to wrap your head around the surgery. It took me several weeks of being in some degree of shock to understand and come around to the need for it after already going through a lumpectomy that I had initially been told got all my bc, but hadn't. And one thing that helped me tremendously was looking at reconstructive plastic surgery sites showing the excellent results women get these days -- especially with natural tissue reconstruction, such as Diep, which is what I had.
I am so sorry you're going through this. It really is a nightmare in the beginning. But I promise you it does get better once you find a medical team you like and trust and you understand more about your diagnosis. (((Hugs))), and I'm glad you've found BCO, and I hope we can help you sort out what is and isn't worthwhile in terms of alternative treatment. Deanna
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I had bilateral mx and it was, frankly, a very easy thing. i did not reconstruct so that might be why. I have almost 100% sensation over my chest, 100% range of motion, arm strength and flexibility as before. For me, this was a good experience. In clothes I look awesome (better than before). Without clothes I look flat, but for whatever reason it just doesn't bother me. I wear a bikini for swimming - it looks great (sorry to brag, but it does!).
I was fairly young and in fit condition going into surgery which aided my recovery. Spent one night in the hospital, came home and the next day walked a (slow) mile around my home.
I have a multigeneration history of family bc though I am BRCA negative. I am thrilled not to have to worry about my future in the same way as before. Could not be better.
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I can only share my experience, and we are all different. I was 32 when diagnosed in October. Mine was not DCIS, but IDC, stage II or III depending on which doctor you ask. With that said, last January I had the BRCA testing done as my mother passed away in 2007 from agressive +++ IDC. If that test would have came back positive I would have done a bilateral mastectomy with reconstruction. Wouldn't have thought twice. Is this scary, yes. My surgeon, who is also my friend, was very honest with me about his recommendations after I was diagnosed. If it was diseased tissue on any other part of our body would we second guess ourselves. After diagnosed I had the BXM two weeks later. Do I miss the girls, um yeah, will I get new ones once I am done with treatment, yep. You have lots of decisions, and ultimately, you only know what is right for you.
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AJ ~ Just catching up on this thread, which I didn't have the time or energy to read through in its entirety last night, and I have a question. You said above that Hyperthermia is offered by UCSF. That's very interesting. As you may know, USCF is an NCI-designated comprehensive cancer center, which means they're one of the top places in the US for cancer research & treatment. So while it's not yet considered the standard of care, it may well be something worth evaluating, as it sounds like you are.
Here's more complete information on it from the NCI: http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
Has UCSF suggested it in lieu of surgery, or as an adjuvant tx to surgery? Deanna
PS ~ I absolutely LOVE my medical team @ UCLA. If you're still searching for information, they wouldn't be too far for you to get another opinion, even though you might want to take that info' back to one of the teams in No. CA for your actual tx. But UCLA has a serious integrative medicine focus (they actually teach it, and it's one reason I chose to go with them), so might be a really good institution to weigh in on hyperthermia and any other options you've heard about.
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beacon,
How long did your surgery take without the reconstruction?
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Deanna, thank you so kindly for your response...
So far I have met with the top surgeons at Stanford Cancer center, and also UCSF (which as you mentioned is supposed to be one of the top centers for end-2-end breast cancer treatment). I have come to be comfortable with the surgeon there (Dr. Alvarado). There are only 3 advanced hyperthermia machines in the entire U.S (one is at UCSF which they just purchased back in September of 2012, the other one is a Bicher Cancer Institute otherwise known as Valley Cancer Institute, and the last one is at Duke University). Based on what Dr. Alvarado told me (and he said he did not know much about hyperthermia as this was new), he thought Hyperthermia would be good for advanced cancer situations and NOT DCIS. But he said to find out he referred me to the specialists at UCSF whose domain expertise is breast cancer with Hyperthermia ( I am about to meet her this afternoon and will post my findings afterwards).
I like your signature statement very much "The soul would have no rainbow if the eyes had no tears". I hope to be able to see the rainbow soon for tears continiue to rain...
Thank you again,
AJ
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Can't answer for Beacon, but mine (same surgery, except I also had node clearance on one side) took about 3-4 hours from conking out to waking in recovery. In Greece they do not send you home with drains, so I was in the hospital for 4 days (+the surgery day). I was out of bed and walking around as soon as I was back in my room. Sleeping was tough, because of the drains and general discomfort. I did not have major pain as long as I took pain pills every 4 hours. Once I was home, I just took some regular ibuprofen when necessary.
It took me about two weeks to start feeling OK. This would be faster without the lymph node dissection, since most of the discomfort was with that part of the surgery.
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Rosy, I think it took about 3 hours. I had no lymph nodes out.
The most unexpected thing was that it did not hurt. Not. at. all. Did not even need a tylenol. They prescribed me all kinds of painkillers and I did not take any. The only time I had anything hurt was once when I caught my drain tube on the doorknob. Yikes! That did hurt. But otherwise, nothing. I've stubbed my toe for more pain than this surgery.
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Thank you beacon & momine.
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Deanna and my other sisters on this thread;
This afternoon I was at UCSF to seek out hyperthermia as a potential treatment for my DCIS (grade 3 6cm wide). Firstly I actually came to know that my DCIS is 6cm deep from just the tip of the nipple down toward the chest as oppose to my previous assumption that the DCIS cells were spread horizontally and hence 6cm width.
The Radiologist oncologist at UCSF told me the following;
1) Hyperthermia can not cure DCIS because the type of DCIS cells is different than those of cancerous cells. Cancerous cells have responded to extreme heat and can be eliminated while DCIS cells can not, hence Hyperthermia will not be effective. I did not ask in details on the nature of the difference between DCIS cells and cancerous cells, and I was wondering if you can shed some light on this to better understand the USCF's explanation.
2) I was also told that hyperthermia works best when the cancerous cells are closer to the surface of the skin, and hence because my DCIS was 6cm deep, hyperthermia most likely would not be effective anyway.
3) i was told, no clinical trials have been done treating DCIS with hyperthermia. when I asked why, i was told because of #1 above, no one has bothered trying out Hyperthermia with DCIS.
4) When i ask them then why places such as Bicher institude ( www.bichercancerinstitute.com/) claim otherwise, I was told if they can provide published scientific studies that proves Hyperthermia cures DCIS then that would be great, otherwise testimonials (otherwise "hearsay") is not enough. I will be asking Bicher institute if they can provide such published articles for after all Dr. Bicher is considered to be the Father of Hyperthermia. I was told Bicher institute is doing something that is at the edge of medicine and it would not be something UCSF would do. UCSF is one of the 3 places in the entire U.S that has the most advanced hyperthermia machine (the other 2 places are Bicher Cancer Institute, and Duke University).
Now, here I am sitting and thinking and thinking as what to do. Should I go with Bicher institute OR go with the conventional treatment (i.e. mastectomy)?
There are many testimonials on the success of Hyperthermia over mastectomy etc. by patients that have been treated by Bicher institute (but these are of course what I consider as "hearsay').
So here i am sitting all alone thinking as what to do. Mastectomy OR Hyperthermia which by mainstream conventional medicine maybe considered as "clinical trial" and NOT something that is for sure.
Your thoughts are appreciated beyond words can express as I am trying to decide as what to do...
Thank you so kindly,
AJ
P.S - And just to spice up the situation today I did an ultrascan of my right breast (which till today with mamo had been thought as being OK) and I was told there is a spot in there that they did not know what it was and they have recommended doing a "needle-biopsy" (which I have no idea what it is but was told it is less aggressive of a procedure than core biopsy that I went through with my left breast). I dont want to go through another biopsy, and if I am going to go for bilatiral mastectomy or Hyperthermia on both breasts why on earth would I want to go through the biopsy...
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AJ ~ I'm glad you were able to meet with the rad onc @ UCSF. I don't know why hyperthermia doesn't work particularly well for DCIS (vs. IDC), but perhaps you could email the rad onc that question.
I also think if you haven't already, it would be really good to sit down with a genetics expert to get a better understanding of your BRCA2 dx. itsjustme referred to it as "a game changer" above, and I totally agree. Being BRCA2+ is pretty rare, so many of the stats you read -- no matter from which type of source, conventional or alternative, just don't take that into account. Have you found the BRCA+ section of these discussion boards? (Click on All Topics, and scroll down until you see it.) I think chatting with others with a BRCA2+ dx might be really helpful.
As far as the conspiracy theory goes, I don't totally buy it, although it is true that it's next to impossible to get funding for alternative research. And no doubt there are alternative tx options out there that work for some ppl some of the time. The problem is, it's pretty much a crap shoot due to the lack of scientific data. And the fact that there are some real quacks out there, tends to make conventional docs especially leery of it. The other thing I personally encountered when I talked to alternative providers who assured me their tx would save me from a mx or would be better for me than chemo was that they often lumped their patient success stories together. In other words, they'd had success curing a variety of cancers with the same tx. They just didn't seem to have the medical expertise nor sophistication re. bc that my docs @ UCLA did. So I guess my feeling is that I would and do use alternative therapies first for anything EXCEPT cancer.
The bottom line is, conventional tx for early stage bc works extremely well. But if we lose the window of opportunity to treat it and it becomes metastatic, then it becomes an entirely different ballgame. I know at the moment you believe you're dealing with pure DCIS. But as others have said (I think on this thread), it's not unusual to find some invasive bc within DCIS.
I'm so sorry this isn't an easy decision for you, but you are absolutely doing the right thing by questioning everything to figure out what YOU want to do. Deanna
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I posted a link for you with the details of a case that was brought against Bicher for extensive malpractice.
His treatment is hyperthermia of the surface and massive radiation doses (judging from the court papers). The people at UCSF gave you the straight deal.
The conspiracy stuff is nonsense. Yes, there are problems with how new drugs are developed and with how the medical establishment works. It is not perfect by any standard. But that is life, not conspiracy.
You have been given some really good advice and resources here. Please make use of it and contact the org that deals with and counsels people with BRCA.
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Thank you Momine...
For my better education and understanding would you happen to have a link to any article that discusses the biology of DCIS cells (which are yet non-invasive and are considered pre-cancerous0 vs. those that are cancerous? I just want to better understand what the UCSF radiologist told me with respect to heat not being effective on DCIS cells while it is on cancerous cells...
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No, I am sorry, I do not know the answer to that question. However, it seems to be a rather moot point, considering that your DCIS goes 6 cms into your breast towards your chest wall and the hyperthermal treatment can only be performed on cells close to the skin.
You should be able to ask a follow-up question of the UCSF people, and they should know.
Again though, they use this treatment along with rads and chemo (and Bicher also uses massive rads along with it) and they probably often use it in cases where surgery is not optimal (usually stage IV situations).
Unfortunately you need the surgery.
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I am curious about something: do you have a family history of breast or ovarian cancer?
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Beacon, No, I do not have any family history of breat or ovarian cancer. i, however, have been tested to be BRCA 2 positive (BRCA 1 negative).
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AJ, have you had a second opinion on the BRCA2+ finding? Was your genetic test done at Stanford or a similar place? And just out of curiosity, with no family hx of bc, what made them even test you for BRCA? Was it just your age? I don't know if it's even possible to have an error in that sort of information, but the question has crossed my mind when thinking about your situation. Deanna
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