Bilateral Breast Cancer

Jazzygirl

Froggie- because I live in a smaller city, we have some mixed availability of cancer services here as well. That is why I ended up going to the Phoenix area for some of my treatment. I have had several friends who have gone through various kinds of cancer and had to go to MD Anderson in Houston or Mayo in AZ. There are many women here who live in smaller cities or rural communities that have had to go outside of their area for treatment. Sloan has some of the best cancer treatment in the world. You probably have some good options for internal rads where you live. Brachytherapy is only one kind of approach, there are others.

I met a sister through BCO who had a second reoccurrence in her node and had brachy in that. Seems like they are expanding it's applications more and more.

I agree with Barred Owl, if you need to do more extensive genetics testing, a counselor is the way to go. Never offered to me, and now when my BS pushes on more testing I say no. I don't have children, my closest living relative has already had bc. There are reasons to do it and reason not to do it. It is also hard to get it paid for, many MANY appeals around that in the past.

Andrea- hugs to you sister. Colon and breast cancer back to back? I hope you are doing okay.

Paxton29

Froggie, I wanted to weigh in on the reconstruction thoughts. I was not a DIEP candidate as there was not enough tissue; my PS said he could try taking tissue from the thighs but he thought I would be unhappy with the results. Given that he can surely charge more for the more involved procedure, his unhesitating implant recommendation carried some weight with me. My husband pointed out I would have two more surgical sites, so more chances of infection, plus scars on my thighs (and missing flesh) and after all that I might still not be happy. He has generally avoided steering me on anything cosmetic (and God love him, he still thinks I'm the most beautiful woman in the world except for maybe Jamie Lee Curtis even post BMX), but that made sense. Plus as you say, there is more recovery time, longer in surgery, longer in hospital.

Also, my PS did not fill my tissue expanders until nearly a month post-surgery, so I had essentially a no-reconstruction experience and let me tell you I was shocked at how flat I really was, especially once the swelling went away. And I did not start with large breasts. Had I been used to, say, DD cup size, I think it would have been difficult for me. Having those TEs is no treat for sure, but getting a fill helped with the discomfort. Knowing they are removing your breasts is not the same as seeing yourself without any, at least for me. Just my thoughts. I totally get why no reconstruction is preferred by many; there is no one-size-fits-all emotionally.

You are so right that there is so much to learn in so little time, and none of us wanted to know any of it . But if it helps, so far at least, I feel I'm on the right path, and I'm sure you will make the right decisions for you.

froggie

I had my consult with the plastic surgeon yesterday. The appointment was scheduled for 30 min but she spent almost an hr with me. She was very knowledgeable, answered all of my questions and then some. I have low levels of anti-phospholipid antibodies. I had a consult with a rheumathologist back in 1996 to see if he had any ideas to deal with a chronically inflamed pericardium. He ran a std rheum.panel and the antibodies showed up. I have never had a clotting incident and if I hadn't had the consult, I would have never known that I had them. That being said, the PS said she doesn't think that I am a good candidate for the DIEP flap since I have a higher risk of clotting even though it has never been a problem before. She is comfortable doing implants but she is also worried about how the pecs will respond to stretching and being cut with my fibromyalgia (well I am worried about that tøo) .She said worse case scenario would be to abort and removed the tissue expanders if it became unbearable but the pecs would have already been compromised. She thought my best bet would be the lumpectomies. If I should have gene mutations then we will revisit it.

The consult with the RO is on Monday. I'll see what she says and what they have to offer in the way of techniques and equipment that will minimize damage to the lungs and heart..

At this point, I just want to get the tumors out to get the final pathology done so I know what I'm dealing with. I'm feeling really deflated at this point. It seems that shortly after being told something or offered an option or plan, another shoe drops. I'm afraid to put any stock in the BS's opinion on the tumors based on the initial pathology and am bracing myself for the worst.

woodstock99

Hello - just reading some posts on tis forum and wondering If my final pathology after my BMX means that I too had bilateral BC as I did have cancer in both breasts. My right breast DCIS stage 0 (found via MRI after mammogram detected calcifications in left breast) and my left breast had both DCSO stage O and a small area of stage 1A which appeared as calcifications in last annual mammogram I am 62 and when I was 19 and 20, I had 2 benign fibroid adenomas removed from my right breast so have been having mammograms for 40+ years. Then when I was 43, I had another rome but in my left beast which was also removed surgically and then good until this last October. I had BMX & SNB (4 nodes removed each side which came back clear). My BS did not seem to make anything of this to me only to say that I had 99% survival rate on right side and 97% on left. The stage 1A was slow-growing & everything came back ER/PR+ and HER2 -. Thanks.

froggie

Welcome, Balthus! Sorry you find yourself in this boat. As both breasts had cancer, it sounds like synchronus bilateral to me.Your history is similar to mine. I had a fibroadenoma in my lt breast when I was 24 and 33. The tumor on the rt showed up on a 3D but not a 2D mam in early Dec.The pre-op MRI found a tumor in the lt that did not show up on either 3D or 2D. Thank god the BS did the MRI or it would have been a period of time before it was discovered.

What type was the 1A stage tumor, if you don't mind my asking? Are they going to do the Oncotype DX testing on any of the tissue? Very glad to hear you were node neg. Will you be on anti-hormonal Tx? Sorry to sound like such a busy-body.

Jazzygirl

Balthus- yes, you would be bilateral. That can be referred to several ways, meaning someone has had it on one side then a reoccurence showed up on the other side at some point. Many of us are synchronistic and have things on both sides. I had DCIS and Stage 1 in my left side, DCIS only found in my right side with MRI. Like Froggie, my pre-op MRI found my DCIS that did not show up on mammo or ultrasound either.

Froggie- double lumpectomy is what I had due to not being able to handle a bigger surgery. If you end up doing brachytherapy with internal rads, I can probably give you some info to help with questions around that.

Itzy

Froggie,

I was diagnosed in April 2015 with DCIS on one side, IDC on the other side, both ER/PR + HER2/neu -. After weeks of questions and answers with the whole gamut of specialists, the final recommendation from the team was bilateral mastectomy. That recommendation was also because of family history with both mother and maternal grandmother with BC. Also, from the first ultrasound, the IDC was measured at 3 cm, and the physical exam indicated possibly 4-5 cm tumor. But as things played out, each subsequent scan and MRI showed the tumor at 2.5 cm. Ultimately, pathology report was stage I, less than 2 cm. Of course, I am grateful for that.

I do believe that the recommendation for reconstruction is the default position at this time, and it certainly was not my default. While my mother died from her BC and no reconstruction, my grandmother lived may years happily with unilateral mastectomy. So, I needed to be convinced that reconstruction really was worth the risk. My final decision was to choose against immediate reconstruction, allow ample time for healing and learning to adjust to my new body (small chested my entire life). If I was to find my situation really problematic, I would return for reconstruction. But if I was adjusting successfully, I would be done with it. Now 8 months out, I'm fine, and will not be undergoing reconstruction. With my early stage and low OncoType, I avoided chemotherapy, and with mastectomy as opposed to lumpectomy, I required no radation either. My course has provided me the opportunity to be done with BC surgery ... period. In addition to the emotional aspect, I also considered the possible financial consequences of needing more surgery down the line resulting from reconstruction. I have a $5600 annual out-of-pocket insurance, and the direction only seems to be going higher. So I have lowered my potential exposure to more financial hits and time away from work.

The decision, of course, is completely personal, no right, no wrong, just where your comfort level lies and how you prioritize the various risks/benefits. You cannot make the wrong decision, but you can have further problems to deal with when recon is the decision.

The whole diagnostic and treatment planning is so challenging, taking the immediate reconstruction issue off the table gave me a tremendous amount of relief. The only door I closed was a possibly somewhat better cosmetic result based on the skin sparing, but being as small as I am, I was more than willing to make that sacrifice.

All of the best to you through this. You seem very thoughtful and deliberate, which will serve you well. All the best to you in your treatment.

woodstock99

@Froggie - here is a recap of what was in my final post=op path report if that explains better. I am dismayed that my BS really did not seem to be too concerned about this. Honestly, if the calcifications had not appeared in my mammogram in late October, I never would have had the breast MRI so who knows how long I had the DCIS. Even though I had mammograms every year after the fibroidadenomas, MRI's were never suggested and I have always had very dense breasts. So what does being bilateral mean and is there something I should be more aware opf then my BS has tp;d me?

Right Breast: DCIS ntermediate & hjgh nuclear grade, crib form, micropapilary & flat types associated with central necrosis, and involving the lobules and sclerosing adenosis. DCIS present in buckshot fashion in 4 slabs from 11:00 to 9:00; span about 4 cm area. Margins are negative. Lobular carcinoma in situ, classic type, The 4 sentinel lobes removed were all negative. Number of blocks with DCIS: 6. Number of blocks examined: 16. Nuclear grade: 2 & 3. All margins: > 10mm. Pathologic staging: pTis No (sn)

Left Breast - Stage 1a & DCIS: Invasive ductal carcinoma. Tumor size 2 mm, Tumor site 1:00. Tumor Focality: Single focus. Histologic Grade: 1. Nottingham Score: 5, Tubular Differentiation: Score 3. Nuclear Pleomorphism: Score 1. Mitotic Rtae: Score 1. No residual invasive ductal carcinoma identified. DCIS, grade 1, 2 & mostly grade 3, cribiform, and sold types associated with central necrosis and calcifications and involving the lobules. DCIS present in buckshot fashion in 3 3 slabs from 1>00-2:00 span about 3.5 cm. Margins are negative. Extensive lobular carcinoma in situ, classic type, nuclear grade 1 and atypical lobular hyperplasia involving preexisting fibroadenoma and adenosis. Margins for invasive or in situ carcinoma: negative. All marginsL > 10mm. All 4 lymph nodes 0 metastases. Pathologic staging: pT1a N0 (sn) Comment: high grade DCIS with focal out pouching growth at the edge with inflammation noted and a feature that is suspicious for invasion, SMM and P6 immunostains were perfumed and they highlighted the presence of myoepithelial cells, There is no evidence of invasion indentified. Deeper levels are also examined. E-cadherin is negative in the LCIS.

I have been actively posting in the January 2016 Surgery forum as well as the Hormonal Therapy forum because my BS did not do any Oncotype or Mammoprint testing on me and even thoigh I am ER/PR + & Her2 -, the MO I saw said that she is not recommending an AI for me as the risks outweigh the benefit. This is a whole other long topic and I am actually planning to put my tail netween my legs and write a letter to the BS who was my 2nd choice to ask if I can come talk to her and bring my final path report & discuss what it all means as well as get a referral to another MO. Trust me, I'd be very happy with not having to take an AI but I have to come across unless they had significant other issues who was not told to even try one.

Yes, I had fibromyalgia but it is pretty subdued as compared to 10 years ago when I was first diagnosed. I have not seen a rheumatologist for years and do not take any meds expect arthritis tylenol when I get an occasional flare due to cold damp weather o r stress. I was diagnosed with cervical spinal stenosis about 2 years ago when I gad a very bad pain in neck & shoulder that would not go away so after a few weeks my internist sent me for an MRI. The neurosurgeon she sent me to told me that if 50 60-year olds had MRI's probably 45 would have spinal stenosis and to do nothing and the acute pain would go away the way it came on and that's what happened. I take Lipitor, Cozaar, Synthroid & Ambien CR to manage cholesterol, BP, thyroid & post-menopausal sleep issues. I am overweight (5' 5" & 175) & sedentary. I know I need to lose weight. I work FT in a high level stressful executive job but I love it and take care of my 86-year old difficult narcissitic mom who is in assisted living 2,000 miles away.

Thanks.

froggie

Balthus, the link below covers the various aspects of breast pathology reports. It gives more details than some of the other sites and mentions many of the terms that are mentioned in yours including some of the stains and what they are used for.

http://www.cancer.org/treatment/understandingyourd...

It is my understanding that it is the medical oncologist that orders the Oncotype or Mammoprint test. The Onctotype DX has emerged as the standard of care and most insurances pay for it. The test on the DCIS is normally used to determine is radiation is needed with a LX so in your case that is a moot point. However, for the IDC it is used to determine if there is any benefit to having chemo. While you are stage 1a there is a slight chance that the genetics of the tumor may result in a high score indicating that you would benefit from chemo. For me, I would prefer to know what that actual score is. That being said, it is a personal choice and there is no right or wrong choice.

With bilateral cancer, they usually treat the more aggressive cancer and in your case that would be the IDC. 5 yr of tamoxifen or an AI is the standard of care as it reduces the risk of a local recurrence and addresses the chance that a rogue cancer cell made it out of the breast. While neg. SNB usually indicates that cancer cells have not escaped the breast, in a low percentage of cases, cancer cells can be found in other lymph nodes. I know you had BMX but there is still a 10% risk of recurrence with it occurring on the chest wall or the skin. As the radiologist that did my MRI biopsy said, "we will be following you very closely from here on in as we know you can grow cancers." Unfortunately, you are in the same boat - you have shown that you can grow them too.

It would be in your best interest to get a second opinion from another MO. If you don't have good choices in your local area, is there any place within a day trip that may be better and have more MO options for you?

froggie

I had an hour appointment with the Onc. radiologist today. I liked her very much and we spent some time talking about lung and heart damage. She does do prone rads and has several other techniques she uses to move the heart back out of the field. She determines her final approach after she sees the CT scan and has markers to work with and actually sees how the heart lies within the field. Assuming all the info we have from the biopsies hold tumor wide after they are removed and there is no SN involvement, I qualify for the shorten treatment of 19 rads, 5 of which will be boosts to the tumor bed. They have been using the shortened protocol along with several other academic health centers for 8 yrs and now have a significant patient population that indicates that there is no difference in outcome from the 6-7 wk protocol of rads so that was good. There is no way I will even consider getting rads locally so I will be relocating somewhere for those so the 4 wk schedule was attractive if that is how I end up going.

I will be getting a second opinion after I have the final pathology in hand from another center that offers additional options.

I have definitely decided to go with double LXs so that decision is now done and the navigator said I should be on the surgery schedule within the next couple of weeks..

Adjustments will be made in the plan if I have a genetic mutation.

I have had several several fibroadenomas removed and they were easy for me so I am not worried about the LX - but I am not sure as to what to expect with the SNB.

My real concerns right now are centered on the SEs with AI. I have enough aches and pains with the fibro and am not looking forward to those that come with the AIs. At this point doing something is better than not doing anything so I will bring up tamoxifen with the MO when I get to her.

Itzy: Thanks for your input. I have decided with the PS that if it comes to MX, I will not have TE placed and have the surgeon leave loose skin instead. If I adjust to the 'new me' I also will be done and the plastic surgeon will do a short procedure and remove the excess skin. If I can't live with the 'new me' then I will proceed with implants and let the chips fall where they may - so that is another decision that is done.

Jazzygirl: I have been reading up on brachytherapy and will be exploring that with the second opinion. Thanks for mentioning it and putting that bee in my bonnet. If I have questions, I'll give a holler.

Jazzygirl

Froggie- you are getting lots of good information for your decision. With respect to double LX and SNB on each side, here was my experience. I had a small incision on the inside of my left breast where the IDX was, one around the nipple on the right where the DCIS was found. Both went okay, although the one near the nipple felt like it was "on fire" when I woke up in the recovery room. So if your incision is closer to the nipple area, be ready for that. More nerves in that area. I did not need drains on either side, but it is possible you may so be prepared for that too. You may end up with scar tissue from this, I have but it has diminished through time per the imaging folks I now see for 6 month follow ups.

With respect to SNB, those were a bit tougher to deal with. Although they did not bother me at first, they did more so through the healing process. That is because those cut through the muscle/pectorials, the healing is a bit more to deal with The breast tissue healed a lot faster than the dual SNBs.

Be sure you have some arrangements for cleaning at home, whether you have other people living with you who can do it or you hire a service. No pushing, pulling, lifting, etc. through surgery and rads for the several months going through that.

I am glad you are getting a second opinion. The more information you get, the better. These decisions can be overwhelming, so you have to be sure you know enough about the various pros and cons to everything to make the best choice for your particular case and with other health issues in mind. We are all different coming in to this as well as all have different dx and pathology, even in the bilateral world.

Wishing you good luck with the next apt.

BarredOwl

Hi:

I posted a reply to Balthus in another thread, but note here that eligibility requirements for Oncotype DX for invasive disease are formally broader than what the NCCN guidelines provide about its use in clinical practice.

The Oncotype test for Invasive disease is not always indicated or performed, particularly for very small, node-negative invasive tumors.

The Oncotype test for invasive disease is currently indicated in certain hormone receptor-positive, HER2-negative invasive disease only. The hormone-receptor status of the invasive disease controls. The following remarks focus on node-negative disease.

For invasive ductal, lobular, mixed or metaplastic carcinoma that is node-negative (pN0), hormone receptor-positive, HER2-negative, where the Tumor ≤0.5 cm, the National Comprehensive Cancer Network (NCCN) guidelines (Professional Version, 1.2016) do not include the Oncotype test. This is because the guidelines do not even include chemotherapy as an option in this particular node-negative subset.

In the discussion, with respect to this group, it is further stated (emphasis and parenthetical text added by me): "Small tumors (up to 0.5 cm in greatest diameter) that do not involve the lymph nodes are so favorable that adjuvant systemic therapy [chemotherapy] is of minimal incremental benefit and is not recommended . . ." It is understandable that the committee does not recommend running the Oncotype test for invasive disease to aid in decisions re chemotherapy in these specific patients, because they do not meet the NCCN requirements for a recommendation of adjuvant chemotherapy in the first place. As a practical matter, the availability of an adequate amount of suitably-prepared tissue to run the test may be a hurdle for some very small invasive tumors.

As you know, the guidelines are not mandatory, and it may be appropriate to depart from what they provide in certain cases. Occasionally, you may see that someone with a Tumor ≤0.5 cm received the Oncotype test for invasive disease. Perhaps this predated the issuance of the NCCN guidelines on point. In some cases, the tumor was on the borderline (~ 4 to 5 mm) in terms of size or they were very young and chemotherapy was seen as being of greater benefit in their specific case. There may be other factors.

You may be surprised that even for larger pT1, pT2, or pT3 invasive ductal, lobular, mixed or metaplastic carcinoma that is node-negative (pN0), hormone receptor-positive, HER2-negative, where the Tumor >0.5 cm, the Oncotype test for invasive disease is optional under NCCN guidelines: "Consider the 21-gene RT-PCR assay." If the test is not done, the decision regarding chemotherapy can be made based on standard clinicopathologic factors.

Eligibility for Oncotype Test for Invasive Disease (may be formally broader than what NCCN guidelines provide):

http://breast-cancer.oncotypedx.com/en-US/Professi...

NCCN Guidelines for Breast Cancer - Professional Version:

http://www.nccn.org/professionals/physician_gls/f_...

At the very top of the page, click on "Breast Cancer", then at the very top (next to the red "pdf"), click on "NCCN Guidelines" to get to a registration page. Access requires registration, but is at no cost. The guidelines are periodically updated.

Most of the information above regarding the Oncotype test for invasive disease is from page 18 of the document (Chart BINV-6), where the test is referred to as the "21-gene RT-PCR Assay".

The guidelines also address pN1mi (≤2 mm axillary node metastasis) (please see Chart BINV-6, at page 18).

Regarding node-positive disease, per footnote (cc), "The 21-gene RT-PCR assay (Oncotype DX for invasive disease] recurrence score can be considered in select patients with 1–3 involved ipsilateral axillary lymph nodes to guide the addition of combination chemotherapy to standard hormone therapy. A retrospective analysis of a prospective randomized trial suggests that the test is predictive in this group similar to its performance in node-negative disease."

I am just a layperson with no medical training. The guidelines can sometimes be a helpful resource, but can be difficult to understand. In this area, the guidelines are advisory in nature, not mandatory. Anyone interested in the Oncotype test for invasive disease should always seek current, case-specific expert professional advice regarding the test from their medical oncologist.

BarredOwl

---

[EDIT:

In February, 2016, ASCO issued the following guideline applicable to OncotypeDX for invasive disease, MammaPrint, etc.:

"Use of Biomarkers to Guide Decisions on Adjuvant Systemic Therapy for Women With Early-Stage Invasive Breast Cancer: American Society of Clinical Oncology Clinical Practice Guideline"

2016 ASCO Guideline: http://jco.ascopubs.org/content/early/2016/02/05/J...

To a layperson, some information seems inconsistent on its face with NCCN guidelines (Version 1.2016), for example, regarding node-positive patients. However, the ASCO document has a particular posture, and assumes a high level of understanding of various test outputs and the underlying research, which a layperson does not have. It is not clear to me how an expert medical oncologist would understand the recommendations, taken together with NCCN guidelines and other information. In addition, new evidence may be available or may become available.

Please do not assume from this document alone that a test is not available to you. Please seek accurate, current, case-specific expert professional medical advice from a medical oncologist regarding your current eligibility for a test. Do not hesitate to ask about the information in the 2016 ASCO guideline and what it means (in light of other relevant guidelines and studies), regarding the use of the test in your case, appropriate uses of various test outputs, and the scope and quality of validation in patients like you.

BarredOwl

froggie

My surgery was on Feb16. The Lxs went as planned. The Lt sentinel node was close to the skin and easy to get. The Rt sentinel node was not where it was supposed to be. The incision started off as a 1" incision in the typical spot and ended up being almost 4" long. BS had to go in digging and tunneling along the whole incision to find it. There is significant swelling above that incision and I'm of the opinion it is a hematoma or seroma. The Lx incisions are fine and healing well.The Lt SN incision is fine and the left arm has good range of motion that is almost normal. The Rt arm isn't doing so great. My armpit and back of arm down to my elbow is numb and the range of motion is no where as good. I was told not to force it so I'm not.

I see the BS on Monday along with the MO for the first time. I am hoping the BS can lidocaine the Rt armpit and drain off the fluid.

Path report was posted to mychart. Nodes were all neg. all margins were 3 mm or greater that were clear of cancer. However, the Rt anterior margin had ADH within 1 mm of the margin but it also made a point of saying there was no cancer cells within 3mm of that anterior margin. stage was 1a and grade 1 for both sides.

The new margin guidelines that came out in 2014 say cancer cells within 1 mm and right up to the ink as long as they do not have ink on them are now considered acceptable margins. I guess I'll find out on Mon if BS is done or will re-excise to get a better anterior margin on the Rt. The RO made a point of quoting those guidelines when I saw her before surgery when I was trying to make up my mind about LXs vs BMX so it sounds like Hopkins follows the new guidelines.

I see the RO on March 9 for a planning session and I'm not sure that will be possible if I can't get my rt arm sufficiently over my head. I'll ask the BS how long he expects the healing to take place on the rt arm and if PT will help it along.

On the genetic counseling front,their first available appointment was June 3. I was hoping to have genetic counseling/testing done before rads. If I have the defect and will need to go to BMX there is no point in having rads. Putting off rads until sometime in the summer isn't a good idea so I will ask BS if there is any way he can speed up that process.

That's where I'm at in this journey.

Jazzygirl

Froggie- glad to hear you are on the other side of surgery. You sound like you are doing pretty well, all things considered. Those sentinel nodes are really tough to heal from so I agree, don't push it. I think if you need PT, most of the time that is paid for with bc (I did not need it, but many women do?)

Did you decide on what kind of rads you will do? Is internal an option? Usually it is with early stage/no node involvement. It is a lot easier than the other, and less impacts to the chest wall, which for both sides, is a lot of rads. I hope you are feeling comfortable with the plan. And yes, if you go the BMX route, that whole plan could change. If you do internal rads, PM me and I may be able to share more of my experience with that to help you.

I think I told you I had a plethora of genetics tests through the past few years and everything came up negative so far. My BS is convinced it should be genetic, so I am an anomoly to her.

Wishing you the best with the next apts. Continue to heal well.

Also, to everyone else, I just finished my 6 month follow up and both the BS and MO said I am doing very well. Sometimes we need to hear that and know others with the bilateral need to know others who are down the road a bit. I am grateful for every day and take nothing for granted!

froggie

Jazzygirl, I qualify for the 19 rads Tx plan which is 14 reg and 5 boosts to the tumor beds. Hopkins does prone but I am not a good candidate for that with bilateral. They would have to do each breast separately and would have an area of considerable overlap around the sternum. They have 8 yr of data from several academic health centers and there is no survival rate or recurrence rate difference between women with early stage disease and neg nodes that have19 Tx vs. the standard 33. The RO uses a Swedish breathing technique that moves the heart out of the field. She won't know if that will hold for me until she gets me in a scanner and looks. If the breathing technique doesn't do the trick she will fight the insurance co. and use the newer machine that hits narrower slices of tissue that spares surrounding tissues.

At this point, I feel better doing whole breast radiation. My body has let me down so many times with me falling into this small percentage of bad things happening group that I feel I stand a better chance if the whole area is zapped.

I'm really antsy about the AI. My ovaries crapped out on me when I was 40 and a lot of my hair fell out. I have a great case of male pattern baldness going on. While I still have decent coverage on top even though it has thinned somewhat, my hairline has receded a lot at the temples. After reading the dermatology literature on hair loss in woman on AIs, I'm really worried about loosing everything on top. I've been debating about looking into having a custom wig made that would be similar to my current style and color just in case.

Jazzygirl, congratulations on your latest appointments and being cancer free.

Jazzygirl

Froggie- it sounds like you have a very good plan for your care. The good thing about bc treatment these days is that it can be tailored to each woman's particular dx for the best outcomes and quality of life.

The AIs don't seem to bother some women, and really are a problem for others. I have been on anastrazole for three years next month and have not had any issues with my hair really. The only problems occurred right after the surgeries I had in 2012, but everything recovered. I don't think my hair is as thick as it used to be, but still looks okay. I know hair loss in general is a big issue with what most women go through here.

There are some good thread to talk to the ladies here for the various drugs. Many have the same SEs. Most women have issues with stiffness, and some bone loss. I have found ways to cope with that and we can chat more about this when you get to that part of treatment. For now, focus on the rads. Taking it step by step is the way to get through this.

I understand your feelings about your body failing you too. I felt my body betrayed after so much happened to me at once. But our bodies also have much wisdom to get us through as well, so trust that.

Wishing you the best as you continue on your path to wellness.

BarredOwl

Hi:

I edited my post above re OncotypeDX for invasive disease to add the following update (copied here):

In February, 2016, ASCO issued the following guideline applicable to OncotypeDX for invasive disease, MammaPrint, etc.:

"Use of Biomarkers to Guide Decisions on Adjuvant Systemic Therapy for Women With Early-Stage Invasive Breast Cancer: American Society of Clinical Oncology Clinical Practice Guideline"

2016 ASCO Guideline: http://jco.ascopubs.org/content/early/2016/02/05/J...

To a layperson, some information seems inconsistent on its face with NCCN guidelines (Version 1.2016), for example, regarding node-positive patients. However, the ASCO document has a particular posture, and assumes a high level of understanding of various test outputs and the underlying research, which a layperson does not have. It is not clear to me how an expert medical oncologist would understand the recommendations, taken together with NCCN guidelines and other information. In addition, new evidence may be available or may become available.

Please do not assume from this document alone that a test is not available to you. Please seek accurate, current, case-specific expert professional medical advice from a medical oncologist regarding your current eligibility for a test. Do not hesitate to ask about the information in the 2016 ASCO guideline and what it means (in light of other relevant guidelines and studies), regarding the use of the test in your case, appropriate uses of various test outputs, and the scope and quality of validation in patients like you.

BarredOwl

froggie

Thanks for that link, BarredOwl. I've already printed it off to take to MO tomorrow. I plan on requesting an OncotypeDX and pushing hard for it, if need be.

sugartoes

I just turned 50 and went for my usual yearly mammo September 2014 which found microcalcifications in clusters in BOTH breasts in the cleavage area, almost a mirror effect. I never wore my cell phone in my breasts as I get asked that a lot. haha. I also had as Balthus (above post) my first fibroma removed at age 22 and another at age 27. {I also had 3 cysts drained and checked for cancer which was normal with one cyst being the size larger than a golf ball and protruded outward of my right breast.} I had a stereotactic breast biopsy which confirmed DCIS right breast, grade 2 intermediate grade, stage 0 AND DCIS left breast with micrcoinvasion, stage 0, grade 3 with comedonecrosis. I had DMX November 2014 with expanders. Exchange was February 2015. I had no lump, mass, or tumor, just those nasty microcalcifications on mammo. My final path report from DMX showed nothing in my left as the stereotactic got all the DCIS. The right had ALH and ADH which was not caught on MRI before my DMX and changed from intermediate grade to high grade 3. What concerns me is that the DCIS on left with microinvasion was 0.05 cm away from the chest wall and the right DCIS was 0.3 cm away from the chest wall which is way to close for comfort in my mind as most doctors like to see at least 2 cm margins, not the 0.3 cm. Because of DMX, no tamoxifen or radiation. Lymph nodes clear with 4 removed on left and 3 removed on right in the axillary area, however, I did have thickening going on and had axillary ultrasound done before my DMX which was normal. I am now having dull pain that waxes and wanes in the center sternum. I am to see my oncologist for a yearly checkup. Because of my outrageous medical costs due to meeting $10,000 out of pocket max in 2014 and again in 2015, I had to pay $16,433 out of my pocket for medical bills. I also hate my new foobs as they are squarish looking and uncomfortable. I want a revision, but cannot afford it and I won't even let my husband look at me. I cannot and will not do the fight if cancer comes back. Plan and simple, I cannot afford it and I am tired and worn down from working too much and worrying about paying for all this crap along with the college loans that kicked in and now a wedding.

Kaneli

JazzyGirl, I have been recommended for Brachytherapy. I will meet my RO tomorrow morning. My lumpectomy is scheduled next Tuesday, Mar 21, and the Contura Baloon Internal Rads will begin that Following Monday, Mar 28, assuming all is clear in the margins and the SNs they take out, I would love any comments or advice on your experience with this type of Rads. I wish I would have seen your post sooner, so I might have a few more questions for my RO tomorrow. Thanks!

Jazzygirl

Kaneli- I will send you a PM and happy to answer any questions.

Clovis93611

hello Janet, I am new to this. I had a CT scan and MRI for my GI track and received a report that states " bilateral breast cancer partially visible ". The problem is there was additional findings that the GI doctor told me to talk to my primary doctor. The nurse said that he had signed off but felt that he needs to reread it. I just turned 61 and to top it off, I have been dealing with autoimmune disease.

Can you please tell me what you went through. I would greatly appreciate it. Thank you.

Luckynumber47

Hi Clovis93611, sorry you find yourself here. Hard to be battling health issues on so many fronts. This is an older thread so you may not get the kinds of responses you're looking for.

From reading about your tests it sounds like you do need an appointment with your PCP and a referral for a mammogram and possibly an Ultrasound and breast MRI. If any of those tests are positive then ask for a referral to a breast surgeon. It's terrible not knowing what's going on so I hope they get to the bottom of this soon.

Funny you mention autoimmune - I've read several posts here about it - seems it's not uncommon to have bothautoimmune and breast issues

Jazzygirl

Clovis- I agee with Luckynumber. If another test showed signs of bc, you need to get some imaging done for some more specific tests to the breasts and if they suspect anything of concern, they will biopsy. From there you will likely meet with a breast surgeon. Your PCP or gyn can get the imaging ordered for you.

We will be here as you go through the next steps.

Dancefan

Hi there. My name is Lisa and diagnosed yesterday 28th September 2017 with bi lateral breast cancer. Waiting until 13/10 for mri awaiting mini pill to clear from my system so they get a clear image. Then results maybe more biopsies and operation to remove tumours and examine lymph nodes. They appear normal on ultra sound. I am so scared. Both cancers are IDC grade 3. It just seems hopless. Anyone had such a diagnosis and favourable outcome ? Family history but no idea about BRAC genes. Best wishes to you all.

Lisa , 53 married one daughter of 20

Moderators

Dear hopelisa, Welcome to the community. We are so sorry about your diagnosis and so glad that you reached out to our members.You came to a good place for hope, support and information. We hope that you will stay connected here as you continue through the treatment process. Our only concern is that this particular thread has not been active since February. You may want to start a new topic either in this forum or in the Just Diagnosed Forum or in the IDC Forum. Let us know if you need help. Just send us a PM. We are here for you. The Mods

Jazzygirl

Hi HopeLisa- reading your post tonight and sorry you find yourself here. A diagnosis of bilateral cancer is overwhelming to say the least, I have been there. But my diagnosis was 5 years ago this month and here to tell you that you can get through this.

Getting any additional tests done, including scans, more biopsies, etc. is important for the doctors to get all the information to determine the best treatment plan for your cancer. Once you have that, you then have that to focus on and know you are doing all you can to get rid of it and keep it away.

There are all kinds of threads here to help you through the various types of treatment from surgery, chemo, radiation, some of the adjuvent medical therapies for the longer term. I encourage to find and join those threads around your treatment steps for information from other sisters who have gone before and can give you helpful suggestions.

One thing I will share with you as a newly diagnosed person is that you may find people who have had cancer or have helped others go through treatment are usually the most helpful during the diagnosis, treatment and recovery process. That includes the BCO sisters here on this site.

Regarding genetics, ask your medical team about genetics testing. My breast surgeon told me that bilateral cancer sometimes can be genetics. I had BRACA done and some others too, nothing came up positive.

Ask any other questions we can help you with, or start your own new thread as mentioned by the Mods. We are here for you!

Dancefan

Hi Jazzygirl

Thanks for your reply and good to hear you are five years clear. Glad to hear you say that best course of action is to gather all the test results prior to surgery as I was anxious about the delay. I will join other threads as I start my various treatments since it seems to me you have to try and inform yourself as much as possible. Thanks for your advice and best wishes Lisa

Legomaster225

Hi HopeLisa, I'm another bilateral sister. I agree that you should keep looking at other threads. It is overwhelming at first but it is not hopeless. One thing I've noticed is that doctors will focus and treat based on the breast with the worst cancer. That makes sense and may have advantages (i.e. Chemo that may not have been warranted in the lesser breast but will get the benefit from treating the other side). At least that is my perspective. Since my left side is smaller, and different makeup sometimes I find I have to ask specifically about it. I'm a little different though because my second breast was not diagnosed until after my BMX.

Lots of good resources on this site. Once you get over the shock and get a treatment plan in place it gets easier.

Peacetoallcuzweneedit

Hi HopeLisa and Lego (we been on same chats before and even remarked how similar our diagnoses are :-) hope you are well!!)

I am a bilateral sister as well. DCIS left breast and IDC right breast. I have gone through a double mx and my IDC was found after pathology went through my tissue. My right breast was biopsied as "precancer" but was 3cm - but my decision about a double mx was already made so regardless of what is was the right breast was going as well.

I was searching last night on the internet and I entered "bilateral breast cancer" and I guess I didn't even realize there was a separate thread for us. I am reading research articles now about differences or considerations. I am going out to City of Hope to meet with a BO (like my 3-4th opinion) that has focused on BC for the past 20 years Oct 17th and this is something I will bring up AND report back her feedback. Hopelisa this all can be overwhelming, especially at the beginning. The waiting and the places the brain goes, can be frightening...and I am sending you peace. I think there is so much support on this site. I will also say hang on and breathe. There are so many experiences in these threads for you to draw on....but the main thing to see is that every post is a survivor or a thriver or whatever you want to call BC sisters and brothers, but that life has taken a turn, but it does go on and there still is positive and favorable outcomes....assume this will be you too.

If I can help at all, please let me know....I had genetic testing, MRI, two biopsies, double mx, tissue expanders, and going through reconstruction, and a pending hysterectomy.