Awaiting Biopsy but know it's cancer

Upheld

Thank you for the link MTwoman! The radiologist used the term "aggressive", so I don't understand that along with a 3 on the scale. I work at a hospital and know all the docs, so I'm seeing the oncologist I picked on Friday. Hopefully, the rest of the test results will be in... I feel totally confident with this doc, so that is yet another blessing. The radiologist said he thought they would order PET scan. I'm just trying to take one step and one day at a time. It was a beautiful day today and I enjoyed every moment!

CeliaC

Upheld - Sorry that you have joined the "C Club", but please remember there are many of us here with experiences & support to share. Here's my story, for now. Biopsy on 11/30/16, got results from GYN on 12/2/16 along with Surgeon recommendation and by the end of the following week had "plan" for lumpectomy surgery in place & scheduled. Worked for me to get things somewhat settled asap. Told only a few close work associates about biopsy. Results were received late in day on Friday & only told boss on Monday. Gradually told certain work associates face to face when I was ready. Husband has been an absolute rock during all, and much needed during many highly emotional moments. Told Sister, younger Brother & SIL and Daughter once plan in place & surgery scheduled. Due to other SIL still undergoing BC treatment & a different type of C that arose, only just told older Brother & SIL over Easter weekend 2017 - by that time, all done with surgery, rads & onto AIs.

BC is highly personal. It is your option to tell (or not tell) whomever you wish, whenever you wish. Be strong. Your faith will help to guide you and we are here to help support one another.

notanisland

Dear Upheld, I am so sorry for your diagnosis. Just 3 weeks ago on 4/12 I was exactly where you are today - receiving results on my needle biopsies. Left breast lesions A&B and an axilla lymph, all positive for IDC. The only person I told right away was my husband, who is also a man of few words, but has been my rock. I had to inform 2 friends because we had a trip planned on June 1. And I told my boss, who is living well with lymphoma. I wrote into BCO and asked for advice on when to tell my 30 yo daughter and this supportive group agreed that I should wait til I had a treatment plan and would better be able to answer her questions with confidence. I decided that only after that would I tell my siblings and other close friends.

I saw my surgeon 7 days after diagnosis on 4/19. She referred me to a Medical Oncologist for neo adjuvant chemo (prior to surgery, to hopefully shrink the cancer and allow surgery that will preserve as much of the breast as possible, although I can still opt for a mastectomy). I saw the MO for the first time on 4/28. In between I had a Total Body Bone Scan and a CT Chest/Abdomen/Pelvic - and I will admit, the 3 day wait for results was hard to bear. I'm now getting my vaccinations updated and have an echocardiogram on Friday, as well as chemo counseling with a nurse practitioner at my MO's clinic. I've asked for next week free to prep for chemo and complete my other medical visits (dental, eyes, skin check) and to get over a bothersome UTI that started right after my scans. On 5/15 I have my port placement and within 2-3 days expect to start chemo, approximately 35 days from DX.

I told my daughter 2 nights ago, and while she was scared and sad, I was able to talk with her calmly and assure her that I am going to do everything I can to beat this! I'm telling you all of this because while your plan may not be the same as mine, it will come together. It may seem to take forever and the waits are extremely stressful, but if I can come this far in 3 weeks (believe me, I was a wreck) you will too. I'll be right there beside you, cheering you on!

Upheld

Not telling anyone about this has been a precious time. I've really had a sense of peace, keeping it between myself and the Lord. Working through my own roller-coaster of emotions, keeping a journal and a book full of the blessings that have happened since the beginning. I know once it is "out", it will change every relationship I have. I will become the person with cancer and however that is received and processed by the people in my life, it will take a lot of emotional energy for me to respond. And this precious time will end.

I am known all over the hospital because I cover the entire building in my work. I've been there a long time and have always tried to make a difference in other people's lives. In my own department, there are 20+ people. I am struggling with what to do. If I only tell a few, the rest will feel as if I don't care for them as much once the word gets out. Then there are all of the nursing units where I have worked with people for years. Then there are all of the doctors I work with daily.... I want to be an example of my faith by how I handle this once it gets out.

Sooo, still don't know how to handle "the telling"

Moderators

Hi Upheld,

We're sorry to hear of your diagnosis.

Do keep us updated on how you are doing and on any more results you get back.

We're all here for you!

Anonymous

Hi Upheld,

Your heart will tell you who to "tell"--you may get pushback from some later, who thought they should know, but those that truly understand you will support your decisions whatever they are. I didn't tell my students (I teach at a Univ.) till I knew I'd be getting chemo and my hair would fall out, requiring me to get a short haircut and then wear a wig while I taught. So I told them about 5 weeks after my initial dx, but I told my TAs right away so if I had to miss a class or two because of appts and port surgery, they would be ready to teach for me. But the following semester, with a new crop of students, I didn't share anything with them.

I probably told too many colleagues at work. This created the problem of too much sympathy. Meaning, after I kind of adjusted to the grinding fear about my condition, I began not to think about my situation as much as I had in the beginning. I felt like I was running a marathon, just one foot after the other, till all chemo and rads were complete. But I wasn't living in my situation my entire waking moments as I had the first month or two after dx.

But I would still have caring people who would, 4-5 months, even a year or more after my dx, come up to me with such a serious, sad, concerned look on their faces, and ask me "how are you feeling?" I appreciated their concern, but it felt like pity at times, and pulled me often from a more relaxed mindstate to instead some place that I had been inhabiting--in other words, they distracted me often from a place where I WASN'T thinking of cancer, to a place where now I WAS thinking about cancer=fear.

My daughter found out while she was waiting in an airport (she was traveling for work). Her 15 y.o. cousin sent her a text telling her about me. My daughter knew I was going in for a lumpectomy, and I wanted to tell her in person when she came home later that night, but my mom insisted on going to the surgery and waiting in the waiting room with my husband. When the surgeon came out to talk to my husband, mom was there, and immediately called relatives (I was angry that she usurped my right to share). Those relatives told others, like wildfire now, with texting, etc.

I did not make any announcements on FB. I use a little social media, but I dislike the lack of privacy social media has brought us these days, so I would never have posted that announcement. Some women do, though--it's just what we feel comfortable with. I tried to keep my circle about who I told small, but that didn't always work. See the next paragraph for why I wanted to keep my life private.

I also had friends who wanted to call me quite often and ask how I was doing. That required me to update them about treatment, etc. and often that was exhausting, because again--talking about my treatment and myself over and over made me feel overly frightened. I asked many NOT to call me, but instead I directed them to a nonprofit journaling site, Caringbridge.org, where I made regular journal entries, and others could visit THERE and find out how I was, instead of calling me. it's a great site-i recommend.

Unfortunately two of my friends couldn't wrap their heads around my need to protect myself from well-wishers who would actually make me feel more fearful during treatment by simply calling and making me think about my situation and talk about it. I found out later they were upset with me. Oh well.

My husband also was my filter--he took a lot of calls from people and updated them. He was my protector.

I hope my story helps you a bit with deciding who to tell.

Hugs,

Claire in AZ

lovepugs77

claireinaz, this:

But I would still have caring people who would, 4-5 months, even a year or more after my dx, come up to me with such a serious, sad, concerned look on their faces, and ask me "how are you feeling?" I appreciated their concern, but it felt like pity at times, and pulled me often from a more relaxed mindstate to instead some place that I had been inhabiting--in other words, they distracted me often from a place where I WASN'T thinking of cancer, to a place where now I WAS thinking about cancer=fear.

sums it up so well. I'm getting this already, and it makes it SO hard to be positive. I'm really okay until I start getting the sad looks and "I'm so sorry" from people...it makes me feel like I've gotten a death sentence, even though I know that isn't necessarily the case. They mean well, but it makes me feel worse. I've been avoiding people for that reason.

I also agree wholeheartedly with this:

I also had friends who wanted to call me quite often and ask how I was doing. That required me to update them about treatment, etc. and often that was exhausting, because again--talking about my treatment and myself over and over made me feel overly frightened. I asked many NOT to call me, but instead I directed them to a nonprofit journaling site, Caringbridge.org, where I made regular journal entries, and others could visit THERE and find out how I was, instead of calling me. it's a great site-i recommend.

It is exhausting, and people just don't get it. I have a family member who will call me after I text them with information to talk about what I just texted. If I wanted to talk about it, I'd call. I'm trying to keep in mind that this is hard on my family and friends, too, but sometimes it is difficult. I created a Caringbridge site too, and will have to let everyone know that is how I prefer to communicate. I'd much rather people tell me what's going on in their lives than talk about cancer.

MTwoman

Upheld, I hear from your post that you are well known throughout the hospital as a caregiver. You are relied upon by everyone and you really like that role, it fits you. As you discussed whom to tell, you were concerned about their feelings of "not being cared for". I would gently (and with the best intentions) urge you to try your best to think about your feelings. It may be very difficult to make that switch, as your instinct may be to protect others and their feelings, to give them access to you or info that makes it harder for you. Try your best not to fall into that trap. Whatever you need for this journey, you should try your best to prioritize. If that is space, to have your own emotions and parse out information through intermediaries (see excellent suggestions above from claireinaz) so be it. Sometimes, you may need a quiet space in your own house, where you have music, reading materials, a nice view, a good smelling candle (whatever makes you feel good) and everyone knows not to bother you when you're there (including your very dear family). I encourage you to make the space and time for yourself that you need to sustain your peace of mind and heal your body. Whatever you decide to do, you have our full support.

Tappermom383

Excellent advice, MTWoman. As women, don't many of us seem to worry about everyone else first? I was very protective of my DH and my DD - told my DH right away but downplayed it. Waited to tell my DD untilI had a plan of action to alleviate her fears. Who's alleviating mine? All of the lovely ladies on this site! Many of my friends and acquaintances know about my BC but I most definitely did not post anything on Facebook and am so glad no one else has either. Caring Bridge is a wonderful site; my niece used it when her son (then 6 and now 16) had brain cancer. Took a lot of pressure off her.

Best of luck to you, Upheld. We're all in this together, no matter the stage, the grade, the procedures.

MJ

Upheld

What wisdom you ladies have! And MTwoman and ClaireinAZ, by your byline you have been taking your time to come back and advise newbies like me. I am so grateful! It is very hard to switch gears and think of me. And I can see how this will be the place where I will be able to come for me.

Anonymous

Yes. I wondered why so many of my friends wanted me to reassure THEM that I wasn't going to die. I mean, I was a gibbering mess from time to time throughout my treatment, and yet they wanted me to reassure them and then of course I had to reassure myself that I wasn't going to die, either. It actually made me angry at times--they wanted me to CARE for THEM--and they weren't getting tx for c!!!!, so not a good place to be when we are already terrified.

One thing I told myself early on was "this is just another disease". Diabetes can kill us if untreated, and so can heart disease, and other diseases. But if you treat them, you can live with them and even in some cases make them go away for good.

Thinking of little c (I never allowed it to be called BIG C) as just another disease--because it is--let me wrap my mind around the fact that millions of us that have had a c dx are now living long lives with no evidence of the disease left.

Finally, the "sad face" from others: all it did was serve to make me feel more abnormal and more isolated from the rest of the human race. I had to find a few women who had a c dx and bond with them, which I did.

I also had to be careful who I told--I'm a friendly person, and would talk to people in the chemo room when I got tx, and I wound up hearing more than I needed to hear (someone was in there with a recurrence, someone had a sister/mother/daughter who just died from b.c,, etc.) Or a colleague would ask me how I was doing, and I'd be truthful--that I had just been given this dx--and they'd tell me an awful tale about their sister or wife or friend who died from the disease. My human circle--those I trusted enough to know they wouldn't be thoughtless like that--got very small.

And I had a brother that lives in the same city as I do who never called me once during 7 months of tx--5 mos. chemo and nearly 2 of rads--not once--to see how I was. He didn't even call my husband to see how I was.

Claire in AZ

Upheld

So. Got pathology report back on one of the 3 biopsies. It was triple positive - 100% on the Estrogen receptor, 95% on the Progesterone receptor, and the HER2 was positive 3+

The lymph node diagnosis was Metastatic High Grade Ductal Carcinoma.  The two breast biopsies were Invasive Ductal Carcinoma High Grade 3/3 on Tubule Formation, 3/3 on nuclear grade, and 3/3 on mitotic activity.

Both biopsied tumors were T1C ( average size of both was .09 x 1.3 x 1.6 cm) but there is a third tumor that was not biopsied.  There is a 5.2 x 10.7 x7.6 cm extensive regional group of microcalcifications.  Report said these likely represented a combination of invasive mammary carcinoma and DCIS   

Plan is for PET scan, MRI, and echo next week.

Oncologist said if he doesn't find cancer anywhere else, his plan is for 6 cycles of chemo once every 3 weeks - 4 different drugs given at once - Herceptin, Perjeta, Carboplatin, and Taxotere.  (I know the first two are not chemo drugs, but don't know what to technically call them)

After the chemo is complete, he would send me to a surgeon for a mastectomy.

I am going for a second opinion at the hospital where I would have the surgery - they have a "tumor board" there that will review everything he and the local "tumor board" have concluded.

Any thoughts? My head is spinning....

gb2115

I think they call those drugs "targeted therapy"--going specifically after the Her2 part of the cells. Sounds like a lot to take in, but good to start getting a plan in place!

Anonymous

Upheld, its great that you are having a board review the recommendations for treatment. You'll get through this--it's just a bump in your long road of life. And there are so many discussion boards for chemo and herpecin and how to deal with those treatments, so much information about allieviating side effects and all that. If you get a mastectomy, when you're ready you can go to those boards and get infor and support there. Step by step, day by day--you'll get through this and look back on it, feeling proud of yourself that you made it through .Because you will.

Hugs

Claire

Denise-G

Upheld - I know you just knew - often you do. So sorry - you will get through this.

Please post and let us know how you and your family are doing. Once you get a plan

in place, it will be much easier and gets better.

Sending my best.

Tamalaska

I told my sisters and very close friends, I told my 17 year old but not the rest of my boys 😔 I feel numb not sure How to feel. Have you got the results back saying it is cancer? I haven't yet

MTwoman

Upheld,

So glad they're getting your scans done quickly and that you are connecting with a board for a 2nd opinion. Once you have their proposed plan to consider, you can schedule treatments and surgery and get started. Once you get to start making decisions, most women begin to feel more empowered, like they're moving forward. I know you're head must be reeling now, it is a lot to take in so quickly. The "learning curve" for women with bc is steep, but you have so much experienced women on these boards to talk to, you can do it! We are with you!

Upheld

Thank you to each lady who has taken the time to reply! I have learned so much here and can't imagine going through this without it.

I go for my PET scan tomorrow and will have the results on Friday when I meet with my oncologist. I'm having an MRI of the brain this week as well as the heart scan as well.

Please pray it has not spread past my lymph nodes!

I'm going to Chapel Hill the 24th with all of my test results in hand to meet the tumor board.

BC401

So good to hear what follow up testing was able to be scheduled this week and that You will be meeting with Your oncologist on Friday. It is the Oncologist who will continue to monitor You long after Your initial treatment has been completed. I think the world of mine and trust it is not His 'first dance' so to speak. Good luck and God Bless.

Chloe2

Hi Upheld,

I am so sorry to hear that you have joined this "club" however as one who was recently diagnosed for the second time I find this community to be so very helpful. So much information, and so many women willing to share.

Like you I have college age sons, I actually have twins. I waited until I knew I could tell them without tearing up. I kept it short and sweet and just told them what they absolutely needed to know. I also waited until I knew what the plan would be, but every family is different. I was upbeat and told them it's just a bump in the road and my husband made jokes about how what this really means is they will be doing a lot more laundry and vacuuming this summer!

This time I was much more open about it at work and I found a wonderful outpouring of support. There will always be those who don't quite know what to say and may not quite saving right thing, and then there are those who avoid us really just because they don't know what to say. I did find it easier to confide in a couple of people and have them share with others so I did not have to say it over and over again.

Sending you peaceful thoughts...

Rufhewn

Upheld. So sorry you are going through this. I surely know how scary where you are at is. I remember my well renowned oncologist telling me he prefers diagnosis' like mine saying "big cancers fall hard". With the drugs available to those of us with Her+, many women are cured and never hear from C again. It won't be easy getting through the next few months but life will get back to normal. I worried during treatment that life would never be the same. In some ways it isn't, both good and not so good, but 95% of my life today is as it was before BC. You will get through this and in the meantime, be gentle with yourself and let others help you. Lean on your son as I did my two adult sons, it brought us even closer. Sending you a virtual hug. Pam

alberttaylor

Hello,

So sorry to learn about your circumstance and I trust that all test outcomes returned negative however I simply needed to tell you that I was the place you are presently back in June of a year ago 2010 shockingly I ended up having BC yet following an entire months of treatment I am doing incredible and plan to backpedal to work in March.

Upheld

I truly do not know what I would do without this board. I reread posts and find comfort in the wisdom.

I'm trying to plan.... Yeah, I know that's a silly statement, but the illusion helps me. Anyway, I'm to have 6 cycles of TCHP over 18 weeks. I really want to try to work some. I work in a hospital around patients but not providing hands on care. I know I'll be immnocompromised. Working would really help me emotionally.

I also wonder about how I'll feel. As successive rounds occur, does it produce a cummaltive effect, meaning that you will feel worse as treatment goes along?

Anonymous

Probably you will feel some side effects...here's a link about what you can do, exercise-wise, for more energy (it's counter-intuitive, I know, but it sure helped me). And I worked through tx, but I have a flex schedule allowing me to work at lot from home, since I teach at a university and only had to be in the classroom for about 12-15 hours a week. My dean was super understanding.

https://www.nccn.org/patients/resources/life_with_cancer/fatigue.aspx

Looks like you're getting tx in the research triangle.../Chapel Hill! Take heart in that, it's world class knowledge and care.

I lived in Fayetteville for a year and my stepdaughter lives in Chapel Hill. My husband and I are in permanent love with Wilmington...:)

Just want to tell you that you have a long life ahead of you. Get fierce-- "lean into the suck" (Sheryl Sandburg, Option , and you'll be looking back on all this sooner rather than later.

Hugs

Claire in AZ

gb2115

Hey Upheld! I did not get chemo, though there was talk of it at a certain point. I also work in a healthcare clinic setting around sick patients, but not hands on care. My oncologist was fine with me trying to work. She said something about planning chemo for later in the week so that I could take a long weekend, but still work partial time. She was also not worried about me being around sick people. I didn't get chemo because of mammaprint results, but I remember that conversation with her because it was a huge concern I had.

You also have the choice of wearing a mask if you are going into a patient room that might be questionable. I did that in the clinic whenever I heard someone coughing or whatever because I didn't want to deal with a cold or the flu around surgery or throughout radiation. And lots of hand sanitizer and hand washing. My fellow staff was also great about warning me away from patients with fevers or whatnot.

Upheld

Got the results from my PET scan today.  Besides the three positive tumors in my breat and the positive lymph node, the PET scan revealed a left internal mammary lymph node metastasis.  In addition, a tiny spot was found on my iliac bone (on the sacram) which the radiologist said he could not rule out bone metastases.  The oncologist said he could not say it was cancer mets either as it is not in an area that can easily be biopsied.

So, his recommendation is to go ahead with the TCHP course of 6 cycles over the next 18 weeks and then another PET scan before a mastectomy to see if the chemo worked.  What are you thoughts?

Anonymous

I'm not as well-versed in all diff txs as some, but it sounds like the right thing to do. You want to stop everything in its tracks asap and eradicate it.

gb2115

yeah, if I we're being told possible bone Mets I would probably go along with what they suggest. Sounds like they want to knock it out as much as they can before surgery.

DancingElizabeth

Upheld...so sorry you are going through this. It sounds like you are in great hands..

Just chiming in on who to tell... I told as few of people as possible. I felt like there's not much they can say or do to change my situation but make me feel even more odd and isolated. I couldn't and can NOT stand all the "@&$'ing questions. All the while - making them feel Ok about a situation that I felt a great deal of anxiety over. The questions people ask: feel immensely invasive. And, they keep asking even when I try to change the subject.

My advice - only tell the people who need to know.

Good luck to you - my cancer was, also, grade 3. And it was over 6 cm. With extracapsular extension on my sentinal lymph node. And, a nodule found in one of my lungs - however turned out to not be anything (though I had to endure 4 CT scans for them to decide it was nothing

Alli

Upheld- I had great experience with several surgeries at UNC Chapel hill. On Wednesdays, the tumor board meets with all the different disciplines - MO,RO, BS,PS, Genetics. Then they come up with the best reccomendations for possible further testing and then treatment.

My MO is actually in Cary,NC. He use to be on staff at UNC but now with Wake Med-Cary. He is an absolute genius.

Please let me know if you have any questions. Once you have a concrete treatment plan, things will feel so much better.

Take care

All