Every test shows new risk factor
I haven't posted for a while. Things have been moving along quite slowly, but moving along all the same. Quick bit about me ... I have a high risk of cancer due to family history, estrogen replacement for early surgical menopause, never having kids, etc, etc, and so on and so forth. In the last 6 months, I've had mammogram, ultrasound and, just recently, MRI. Each test has shown a new risk factor to add to everything else.
After the mammogram, I had stereotactic core biopsy, which came back with ALH/LCIS, as well as dense breast tissue.
After ultrasound, I had 2 more core biopsies, one of which came back with fibroadenoma with complex features.
I picked up the MRI results today, and even though it says no cancer, it does say a marked degree of background parenchymal enhancement in both breasts.
All of these things are markers or indicators of a much higher risk of cancer, so more than ever I feel like I'm walking around with two ticking time bombs strapped to my chest. I see my surgeon on Feb 15 (seems soooooo long to wait when I've already been on this road for 6 months) to discuss the possibility of BPMX. At my last visit, he said he wasn't sure if I would qualify for reconstruction through the public health system, which would mean going flat. At this stage, I don't even care about that. I feel like my breasts are giving me every warning that I need to get rid of them now, and I just want them gone. And since the surgeon brought up maybe not being able to have reconstruction, I've come around to thinking going flat might not even be a bad thing. My boobs don't define me as a person, so neither should the lack of them, if that makes sense. Even if I do qualify for reconstruction, I'm thinking of having it delayed for 12 or 18 months to see how I deal with flatness. The most important thing for me right now is reducing the risk of cancer as much as possible.
On Saturday, a very close friend lost her 2 year battle with breast cancer. Her death has hit me hard and makes me even more determined to have the surgery.
*sigh* Just a bit of a rant, I suppose. Typing it all out and trying to get everything straight in my head. PSSHH! ... merry christmas and happy new year 
Comments
-
Waiting is awful. I am _NOT_ trying to persuade you one way or another about your treatment choice(s). I'm sorry you are going through all this. It is not fair.
You probably won't like what I'm going to say next though.
You really don't know your breast cancer risk accurately. While you may think that your risk is higher with every new risk factor you have, that's not necessarily true. A person can have many different risk factors, but that doesn't mean you can add them up to get to an estimate of your risk. Theoretically, many different risk factors might be additive, they might be neutral, and they can even be subtractive. For example, if you have risk factors A,B and C, if you have A alone, or B alone, or C alone, each might increase your breast cancer risk. But if you have A plus B, or A plus C or B plus C, or A plus B plus C, then you can't necessarily add each risk factor up to get your total risk. What you have to do is to compare your risk with a group of people who have the same risk factors.
Since you, like me, have LCIS, which is uncommon, it is unlikely we will find studies that Exactly Study your risk factors.For example, on this website they state Women with a family history of breast cancer should be advised that family history does not appear to have an additive impact on risk of breast cancer with HRT usage. https://canceraustralia.gov.au/publications-and-re...
Of course, there are conflicting studies and conflicting evaluations on studies. Experts have to re-evaluate everything, and eventually people come to (more of a) consensus. That's how science works.
For individuals, only really large risk factors can make you more confident about estimating your risk. This study looked at the Gail model. https://academic.oup.com/jnci/article/98/23/1673/2...
Why is it so difficult to develop worthwhile breast cancer prediction models for individuals? First, the risk factors used in current models are widely prevalent throughout the population and are neither highly sensitive nor highly specific. In addition, a risk factor must be very strongly associated with a disease (with a relative risk of about 200) to be worthwhile for screening ( 18 ) , and the same appears to be the case for accurate prediction using combinations of risk factors. Most risk factors for breast cancer are relatively weak. Even "strong" risk factors, such as older age, mammographically dense breasts, and radiation exposure, are associated with relative risks of less than 10. [Deleterious BRCA1 mutations in young women may be an exception ( 19 ) .] (emphasis mine)
The Tyrer-Cusik model may be a somewhat better model. https://www.sciencedirect.com/science/article/pii/... Although certainly not perfect, at least one website found it to be about 80% (IIRC) predictive, as opposed to about 60% for the Gail model. Note the Tyrer Cusik model says that "No responsibility is accepted for any clinical decisions arising from its use." http://ibis.ikonopedia.com/
Again, whatever your risks are, I am _NOT_ trying to influence you one way or another about your treatment choices. That is a decision only you can make.
Best wishes, leaf
-
Thanks for your reply, Leaf. You've really got me thinking about what all these different risk factors mean.
Is it like driving a car? Driving at night is moderately risky. Turn off your headlights, and the risk increases. Add in doing 80 in a 60 zone and the risk increases even more. Add in drinking a bottle of scotch before you start driving, the risk increases more again. Add in trying to text your friend at the same time and the risk increases yet again. The cumulative effect is that you're almost surely going to crash and burn.
Or is it like a prison term? You do 5 crimes and receive a 2 year sentence for each crime, but the sentences are to be served concurrently, so you only end up serving a total of 2 years for all 5 crimes.
It's really confusing, hey. I would imagine that I would have a higher risk than someone who just has family history or just has LCIS. Like if each thing increased the risk by, say, 20%, I might not now have a 40% risk, but even if the risk factors don't exacerbate each other, I must surely have a higher risk overall just because I have more than one, so maybe like 25% or something. It's like swimming in a tank with 2 sharks instead of just one. Or at least that's how it works in my head.
Maybe my surgeon will be able to make it clearer for me. I just have to wait and see. If he is willing to do it, and it can be covered under the public health system, I feel 100% sure I will opt for the BPMX. I might not be able to do anything about other people texting and driving drunk without headlights at twice the speed limit on a dark night, but I can do something (hopefully) about the risk I feel my breasts pose to my long term health.
-
I don't think we can accurately estimate our breast cancer risk. There is too much we don't know.
We don't know how LCIS makes you at increased risk for breast cancer. (I have many of the risk factors that you do.)
Sometimes results in science are exactly the way we would intuit that they would work: such that multiple risk factors increase your risk, and they all add up. So that, as in your example, turning off your headlights at night and doing 80 in a 60 zone and add a bottle of scotch would all individually, and together, increase your risk.
But sometimes science experimenters get an answer that is NOT intuitive. That's when the scientist has to think 'Hmmm--- why did that happen?'
There can be MANY reasons why we don't get the answer we expect. I'm not a researcher, so I'm not going to be able to give you a complete answer.
Different risk factors might be a marker for the same underlying cause.
For example, say you were a surgeon BEFORE doctors developed the germ theory. (This theory is that many microorganisms can cause infectious disease.) Before the ~mid-1800s, surgeons never washed their hands or changed their surgical gown before or after surgery. Of course, in these cases, people didn't want to go to a hospital because they knew they would almost certainly die there. So, going to the hospital was a big risk factor for death.
Well, Ignaz Semmelweis, an obstetrician, saw that women who delivered in the hospital attended by doctors or medical students had a high rate of death. But those deliveries that were attended by midwives had a lower rate of death. Often the doctors and medical students would go directly from an autopsy to delivering babies. He found that if you dipped your hands in chlorinated lime water before examining pregnant patients, you could decrease the mortality rate from 18% to about 3% at his hospital. His findings were rejected by most of the medical establishment.
So going to the hospital and not disinfecting your hands were both risk factors for death. We now know that both those factors increased your exposure to dangerous bacteria/viruses/etc. But before the germ theory, we didn't know why. In this case, both factors acted through the same cause: exposure to dangerous bacteria/viruses/etc.
In the case of LCIS, we don't know what causes LCIS women to be at a higher risk. For most women, we don't know why they got breast cancer and why another women did not.
I don't know of any studies that have looked at LCIS women who have not had children, had family history, and have dense breasts, etc.
-
Hopefully, one day, the causes of breast cancer will be as clear as germ theory is now. It would be good to be able to just take a single test that gives the answer. For now, though, I guess the only thing that we can do is make the best decision based on the information and research currently available.
-
Yes, I totally agree. We need to fund science more. Just as you say, we need to make the best decision we can based on the information and research we currently have. If we didn't have science, look at what our world would look like. As recently as 1967, there were about 15 million cases of smallpox worldwide each year, with about a 30% risk of death. Now it only exists in research labs.
-
hi everyone. I am scheduled for a bmx on the 24th. My doctor says it’s a matter or when not if. I was diagnosed with LCIS in August. In 2012 ALH,scloresing leisons or radial scar. I have always been very dense and have had so many needle aspirations because I am super cystic. My mother had breast cancer and a single masctomey when I was 15.honestly,I am tired. Mammas,ultrasounds,mri’s with contrast every 6 monthsand then biopsies. My good friend said “you are watching! What are you going to do”? I am so scared but according to my risk chart made by my hematologist I am at a 64% lifetime risk of getting breast cancer. It’s become a no brained for me at this point. LCIS will never present as a lump. And if it is found in 1 breast it can travel anyplace if the cells get out of the confines of the lobule. It’s not an easy thing to do but for me it’s the right one
-
Hi Marlena
I get it. I really do. I've only been going through this for about 7 months, and I am tired already. I really take my hat off to women who go through it year after year, but I just don't think I'm that strong. Surgery is scary, but I too have a life time risk of 64% (well, 63.9% to be precise), and that's not odds I like at all. I still have another month to wait for my appointment with the surgeon to see if he will even do the surgery, then we have to go through the process of seeing if I can get it done on the public system. You're not alone.
If you haven't already, pop on down to the "Surgery - before, during and after" topic. I'm sure you will get lots of support there from women who are going through surgery at the same time as you.
Good luck. I hope you have successful surgery and a quick and speedy recovery
-
Hi Marilena and Kerrie Oz I am thinking of you and my heart goes out to you both. I know it is such a difficult time. I know I was there a year ago. My mother and aunt both developed breast cancer before the age of 40. I had my first mammogram when I was 45 - yes I was an ostrich with my head in the sand as I refused to have mammograms earlier as I couldn't face the idea of watching and waiting!. Well my first mammogram showed dense breasts, and microcalcification. My biopsy showed DCIS and atypical ductal hyperplasia. My MRI showed bilateral global enhancement and when I researched this I found that even this put me at a higher risk of developing carcinoma. Also my breast radiologists were both concerned that neither MRI nor mammography were going to be useful for followup screening, because of the hyperdense breasts on mammo, and the bilateral global enhancement on MRI.
So from a first mammogram on the 23rd December, I ended up doing a bilateral mastectomy on the 22nd February. It was a bad time at the time. I was under shock... definitely not planned for.... and I took the decision after a couple of weeks of reading all night through guidelines, and medical papers etc. It was a bit of a roller-coaster of a year, with lows and highs, but I have no regrets at all. My husband is relieved that we have done our best to prevent me getting an invasive cancer. And yes breasts don't define who we are. Even if MRI were an option follow up, even the thought of yearly gadolinium is a risk in itself - A warning has been issued on gadolinium recently. And why wait to get invasive tumour. Some docs say don't worry - we'll get it in time if you get invasive tumour. Thank you I don't want to see you again if I can help it, was my reply after the diagnosis of DCIS. I don't want to need chemo or rads or tamoxifen. I want to prevent needing all that since my risks are high, then out!
So courage I'll be saying special prayer for you on the 24th Marlena, and of you on the 15th Feb, Kerrie Oz. But it's not the end of the world, and oh it's so much easier to have the surgery, than the surgery, chemo and rads!
If any of you want to pm me please feel free to do so.
-
BringOn2017 - It sounds like you were thinking exactly like I am now. If I can get surgery now before I have cancer, while I'm relatively young and healthy, with a good chance of a great recovery, why would I wait until I'm older and actually have cancer and need chemo and rads, etc. An ounce of prevention is better than a pound of cure is my mantra. The decision is not a hard one for me, although I can imagine how some would struggle with it, specially younger women. Did you have reconstruction done? If so, are you happy with it? If not, how are you coping with being flat?
-
Hi Kerrie yes that's about it! I did have reconstruction, initially with subpectoral tissue expanders, and then gradual weekly expansions. I had my exchange to silicone implants in December. They're ok, quite symmetrical, much softer than the saline expanders. Now I'm waiting for them to drop but that takes another 3 months or so. I've healed well and will soon get back to work. I had initially been opting to go flat but was convinced otherwise by my breast radiologists who also happened to be my friends and colleagues. I was previously scared of surgical complications but was convinced to give it a go! It's convenient re swimming, and not having to fit in a prosthesis. Many people are equally happy to go flat.
-
BringOn2017
That's great that your reconstruction has gone well. Hopefully when they settle and drop you will be in love with them. Is there a reason you went sub rather than prepectoral? In my mind (and I could be looking at it all wrong) pre would be better because there's no disruption to the muscle, and therefor easier recovery and less likelihood of complications. I'm really tossing up about that, provided it's even an option for me. If I can't get it done through the public system, there's no way I could afford to get it done privately. I need to talk to my surgeon about whether it's easier/better to go flat and have delayed reconstruction or have immediate reconstruction and possible have to have implants removed due to complications or whatever down the line. And then there's the whole thing of what type of reconstruction would be best. I really wouldn't want any of the flap type procedures, just for the fact of more surgical sites that need to heal and are susceptible to infections/complications, ect. So if implants, what type, what size, pre or subpectoral and so on and so forth. At this point, I feel like I would be quite alright with going flat, but then what if I get 6 or 12 months down the track and find I can't deal with it for one reason or another. How much harder is delayed reconstruction as opposed to immediate and what extra complications might it bring? All questions and swirl and twist around in my poor old brain. I guess I just have to take it one step at a time and do what feels right as each decision need to be made.
-
In my hospital they only do subpectoral. I was offered flaps but didn't want to consider for the same reasons you described. My surgeon had offered both immediate and delayed reconstruction in case my mind wasnt made up.
The disadvantage of delayed was an extra surgery.
And my surgeon had also promised that if I ever wanted to they could be removed.
Ultimately I am ever so grateful for the excellent care both my surgeons gave me.
-
Hopefully my surgeon will be as good as yours. There is only one in town, so he's just going to have to do, anyway. I do believe he is a good surgeon, though, and I trust him, so it's all good.
-
Don't worry.... I didn't have any large selection either in town either. It was a case of one or the other. In the end they both worked together! So I had a consultant per boob. But like you said, I also believed they were good and I trusted them, and I haven't looked back. Today I went out for a coffee with a friend. It's exactly 4 weeks since my surgery (my exchange) so I broke the rules for a couple of hours and got myself out of my post-op corset and strap and into a soft foam bra..... and voila! I felt good and feminine and looking into the mirror, honestly when wearing a bra I don't think anybody would say I had had any surgery except for a bit of scarring under my right axilla! I wore a lovely top round moderate to low and yes there is cleavage and reasonable projection!
-
I've finally gotten an answer from medicare about my surgery. They have approved the PBMX, but not reconstruction. I guess that takes the question of under or over muscle implants and everything like that out of the equation. I've got an appointment with the surgeon on May 22, where we'll do paperwork, schedule surgery (I assume), and I can ask any questions I have. I'm not sure exactly how I feel about going flat. Most of the time, the idea doesn't worry me, but sometimes I think "What if I absolutely hate having no boobs?". It's such a final thing. But then, I never go out without a bra on anyway, so wearing a bra with some sort of stuffing/prosthetic won't be so different. The main objective is to reduce the risk of cancer, not to have gorgeous boobs, so flat it is
-
Wow, the decision on Medicare is very surprising. I thought the reconstruction was considered to be a medical procedure (not cosmetic) and so was covered by Medicare. I had PBMX last April with immediate reconstruction for LCIS and received a Medicare rebate for the reconstruction, although I had to pay quite a bit out of pocket for the surgeon because of the way they worked out the rebate when having multiple procedures at the same time. Luckily I had private insurance which paid for the implants, hospital accommodation, theatre fees etc and I could choose my own surgeon and schedule the surgery for a time that suited me. Could you go on the waiting list for elective reconstruction
-
Mammabear, I imagine medicare won't cover the reconstruction because the surgery isn't considered a medical necessity due to me not actually having cancer. I don't know, though. It seems strange that they covered yours and won't cover mine. I will know more when I see the surgeon on the 22nd. I don't have any private cover. Maybe that makes a difference. I might pop into the surgeon's office and see if I can get a copy of the medicare approval and call them up and ask why the recon isn't covered. It would be nice to at least have the option of reconstruction, and if I was going to have it, to have it done at the same time as the mastectomies.
-
Yeah, I'm wondering if it's a coding issue. These things have to have the right code to be approved. Sometimes it's just a matter of someone typing in the wrong thing that kicks it out. I understood that if insurance covered mastectomy, it had to cover reconstruction too. Maybe i'm wrong, but I hope not.
-
I don't actually have insurance. I'm going through the Australian public health system. My surgeon did warn me they may not cover reconstruction. It's strange, though. The more I think about going flat, the more the idea appeals to me. The shorter surgery, quicker recovery, lower chance of infection and other complications, plus not having those foreign objects in my body all combine to make me think it's the best way to go, regardless of what Medicare does or does not cover.
-
When Mom recovered from her surgery (no reconstruction) and found a bra she loved, and a prosthesis she liked, her spirits were lifted quite high. It looks natural, it feels natural, clothes look great on her, and surgery was almost 40yrs ago. Honestly, with bra on and no shirt on, you cannot tell she has a prosthesis even today. She even upped the size of her prosthesis eventually. If you have a store in your area that specializes in these products, take a field trip to check it out.
The only thing my Dad bless him ever said was that he was always a leg man, and he first saw her from behind and loved her legs. They were fun to see dancing together.
If however you want the reconstruction done, speak to your dr about what other reasons (feel the cold too much, psychiatric symptoms, occupational side effects, body unbalanced, back pain, neck pain, etc) might influence the insurance company's decision to authorize payment. I remember going to a Derm once, and the nurse, when she put me in the room, advised me to just say "it bothers me" because then my insurance will cover it no questions asked.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team