Just Diagnosed and Worried About my Daughter

notanisland

This is my first post. On 3/3/17 my Gyn was alarmed at the hard mass in my left breast and scheduled me for my annual mammogram plus an ultrasound, as well as a followup appt with a breast surgeon (to see if she felt a needle biopsy was called for.) This mass had first been noticed by my PCP in August of 2015 (after a clear mammogram that noted I have dense breast tissue). A subsequent ultrasound in October 2015 showed nothing suspicious and the Radiologist at the time said I could pursue a needle biopsy but that she thought I might just have very fibrous breasts. In April of 2016 my mammogram was again clear. I suspect this is why another ultrasound was not ordered, though the mass was still there. In hindsight, I wish I had done more - ask for another ultrasound in 2016 or had the biopsy to begin with, but I was so relieved to hear that nothing showed, I let it go.

On 4/7 I went to my hospital's women's clinic for a 3-D mammogram, an ultrasound and a dexa (bone) scan. There were 2 adjacent "lesions" in the left breast that looked abnormal and the Radiologist scheduled me for a core needle biopsy on 4/10. When I arrived I learned he had also seen something in a lymph node and would biopsy it as well. By 4/12 I got the results back - all three biopsies had come back positive and I have IDC. When my GYN delivered the news she described it as invasive and metastatic, which made my heart stop. It was my understanding that being in the lymph made it (at this point) at least Stage III, but not metastatic until it was seen in other organs. When I questioned this (on the verge of hysteria) she backed off and said that she was not a cancer expert and was now turning me over to the breast surgeon who would connect me with an oncologist when appropriate. The only good news I got that day was when my PCP called to tell me that my dexa scan looked good and showed improvement in my bones.

As others have noted, the waiting is the hardest. I have gone through (still AM going through) shock, numbness and anxiety in the past 5 days and have another 4 to go before my appt with the surgeon. I'm trying to maintain some normalcy and manage fairly well in meetings and social situations. I'm also trying to stay current with my work though because I work at home I can't always keep my fear and distraction at bay. This website and forum has helped me a lot. My husband is being supportive in a quiet way. He knows I have no answers so doesn't ask questions - just makes sure I eat (fear has destroyed my appetite) and get rest, and has let me know that he will take off from work whenever I have a doctor's appt. Yesterday he even went with me to get a pneumonia vaccination that my PCP recommended since surgery is definitely in my future.

We haven't yet told our 30-year-old daughter. I know she will be devastated. At age 6 she witnessed her grandmother's (my mother's) recovery from pancreatic cancer that was thankfully caught early; and 8 years later, her battle with terminal lung cancer. I plan to tell my daughter about my diagnosis on Wednesday evening, after I see the surgeon. It's not a great time to break the news to her as she will be going out of town two days later, but no time is a good time.

I may be more worried about my daughter than anything else right now. I recall how hard it was for me to go through this with my own mother - I barely slept, had a difficult time at work and at home, went through all the stages of grief... I've read here that we, as cancer patients, shouldn't be hesitant to ask our doctor for Ativan, but what about our loved ones? What can we/they do to alleviate their anxiety, fear, depression, sleeplessness?

Thank you for this forum, for being here to "listen" and hopefully share your wisdom and experiences. As I learn more I hope my communications sound less robotic, more human!

Moderators

Notanisland-

We want to welcome you to our community here at BCO, although we're so very sorry for the circumstances that have brought you here. We hope you find this community to be a source of support as you begin down this road.

As a starting point, you may want to check out a couple of forums, for information and to connect with other members. Our IDC forum is a great source: https://community.breastcancer.org/forum/96, as well as our Stage 3 forum: https://community.breastcancer.org/forum/67. You'll certainly have more questions as you meet with your breast specialist and oncologist, and this is a great place to ask them for advice and insight.

You're not alone, and we're all in this with you!

The Mods

Icietla

Hi notanisland, and welcome to BCO. We are very sorry about your diagnosis and this especially anxious time.

While the presence of breast cancer in any nearby lymph nodes would technically be (local) metastasis, that is not what is usually meant by the term Metastatic Breast Cancer.

You are going to feel much better and much more in control very soon, when the start of your treatment has been planned, and your treatment will then move right along. Until then, it will seem a very long anxious time, kind of like when you were waiting for your biopsy results.

Do you have any more information from your Pathology report -- the IHC characteristics of your cancer?

If there are no indications of your cancer having metastasized to other areas, your Stage will be determined after your surgery. Any Staging done before then is only provisional and subject to change depending on Pathology results for the tissue to be removed in your surgery.

The Surgeon will most likely present and generally describe your surgical treatment options. If you are already decided before then on a surgery type that is among those offered, then the planning of your surgery can start already.

Your daughter will most likely take hopefulness cues from you. You will probably feel much better after meeting with your Surgeon. We hope you will.

Tappermom383

I hear you, notanisland! I was terrified about telling my daughter (31) but I wisely waited until I saw the surgeon and had a plan. I told her about the sequence of tests and said that I have breast cancer. Her question: What are you going to do about it? Thank goodness I had an answer. I have found myself putting a positive spin on this for both my daughter and my husband. And so I haven't really come to terms with this myself.

Anyway, best of luck in telling your daughter. I also work at home and find myself spending a lot of time on this site!

Let us know how it goes.

MJ

MinusTwo

I agree about waiting to tell your daughter until you have a plan in place. I know your waiting for test results is hard enough, but Tappermom is right. If you have a plan, you can guide the conversation.

notanisland

Dear lcietla, you are my first reply and for the first time since that horrible phone call on Tuesday, I burst into tears! I've given myself a 5 day headache from holding my emotions in check, but a good cry is such a release.

I don't have a copy of my report yet and my Gyn and PCP seemed to have only the basic info. I will definitely ask for a copy when I see the surgeon Wednesday and from now on. I'll also arm myself with many questions that I've only become aware of since reading through this incredible forum.

Thank you too for the explanation of local metastasis vs. Metastatic Breast Cancer. All of the terminology is so new to me and I'm realizing how important it is for me to master. You are so right about my giving hopeful cues to my daughter. Whatever I learn from the surgeon, whatever next steps and plans result, I will assure her that I will do whatever I can to get through this. And I will tell her that I've found a wonderful community of people willing to share and give me support. As I start this journey I hope to be able to return the favor soon. Enjoy your Easter!

notanisland

Tappermom38, I'm amazed by how quickly you've gone from diagnosis to surgery. Hardly time for everything to sink in! On the other hand, it must be a relief to have surgery behind you.

Thank you for responding - it means a lot to me that we have much in common and that you would give me support so soon after your own diagnosis.

My best to you and all the dear people in this community.

notanisland

Hi MinusTwo, I needed that! Every bit of confirmation calms me down and reassures me a little more.

Icietla

Well, the Moderators got here first after your first post. I am pretty sure they are human.

A (figurative) roller-coaster of emotions is normal for now. So is having trouble getting to sleep. There will be a lot of times, especially in the nearer term, when you will feel like having a cry or just feel yourself tearing-up a bit. Roll with it.

Your husband has suffered the same shock. The diagnosis delivery is always stunning. He and your daughter are welcome to join BCO too if they think it might help them too.

It is fine that you have had the Pneumonia vaccination. I think you probably should not have any more vaccinations in the near term, though, unless your Oncologist specifically okays it, and that you should try to avoid contact with any (other) recently vaccinated persons.

Whether your treatment is to start with Chemotherapy or with surgery, it is important that you and your household member/s do your best not to catch any communicable diseases that may be going around -- such as respiratory illnesses. Chemo treatments and surgeries are sometimes delayed (from *otherwise ideal* scheduling) because of sicknesses like that. Your Oncology Clinic will likely expect and require you and your accompanying support person to be apparently free of any such illnesses whenever you visit there. I strongly recommend that you discourage and avoid non-essential in-person visits. I strongly recommend also that you and your household member/s do your best to keep out of crowds and also that you get and wear clinical use masks and gloves whenever (any of) you must be around others, until you are all done with any and all surgeries and any and all Chemo treatments and follow-ups therefor. On the bright side, your wearing clinical masks and gloves in any public places will usually get you more "personal space" -- and that will help even more to reduce your risks of catching anything that might necessitate delay or interruption of your treatment plans. Pharmacy drive-thru pick-up windows are best for getting your medicines now. Other shopping is best done by mail order or in the stores at like 2 a.m. on Tuesdays, provided, however, that those Tuesdays are not the first day/s of the month/s. You get the idea.

notanisland

My apologies to the Mods! Of course they were my first response and welcome to BCO and I do appreciate them. I have already read through all of the IDC and Stage III forum topics and will stay current.

Icietla, you are a fount of useful information. I had no idea that I wasn't supposed to take any vaccinations before talking with an oncologist, or that I should avoid contact with people who have been recently vaccinated.

I will definitely avoid crowds and visits prior to and throughout chemo and surgery. I am already very susceptible to sinusitis and have ongoing issues with a post-nasal cough that makes it very difficult for me to stay still through an MRI. I would worry about catching a cold, flu or sinusitis turning into a sinus infection, especially before surgery or during chemo when my resistance and immunity will be low.

Do you think it's alright that I get together with family tomorrow for Easter? They don't know of my diagnosis yet and I was hoping to enjoy a special occasion with them before I see the surgeon on Wednesday and treatment plans are set into motion.

Icietla

NO! You should not go. Nor should you receive any unnecessary visitors. You will have plenty of time and opportunities for special events and in-person visits complete with hugs later. I suggest you just tell them you are not going, that you are not feeling quite well, and that you would not want them to catch anything from you. All true, right? So think of it as a sort of *limited hangout.*

More soon.

notanisland

Icietla, I'm so surprised that my Gyn said nothing about this to me! Thank goodness I found BCO and you!

I'll make my excuses and stay home. Lay low and avoid outside contact. I'll have to ask my poor husband, who goes to the office and out into the field everyday, that he has to stay away from anyone who seems even the slightest bit ill.

Thank you for your prompt reply - I could have made a big mistake

Icietla

You are very kind. I do not know so much. I am new here too.

It is okay, that you have just had that vaccination. No need to fret about it. You and you husband should not have any others, though, unless and until your Oncologist okays it.

Before your first Oncology Clinic appointment, inform them (by phone) of your having had that vaccination and the date of your having had it. Many of their patients are immunocompromised and could be endangered by others' recent vaccinations. If you have Chemotherapy, you could be immunocompromised for a long time -- possibly for months and months and more months -- following its completion.

Get psyched-up, not psyched-out. Whatever it takes, you can do it!

Be sure to inform your Surgeon on Wednesday of the post-nasal cough thing you have going on. You may be given medicine to keep it under control for your surgery. Make a note about it on your reminder list of questions you want to remember to ask on Wednesday, so if that matter has not been covered already, you can have the Surgeon consider and discuss symptom control before your meeting is over.

My husband and I kept clinical use masks and gloves in the cars and always wore them in public from January of last year, when we knew I almost certainly had cancer, until my last surgery was done in June. Mercifully, we did not catch any of the sicknesses going around. There were people who wondered and asked why we were masked and gloved, and we told them that we were trying not to catch Zika virus (that was then the subject of so much news coverage). [Are you now acquainted with the general notion of *limited hangout*?]

More soon.

notanisland

I am beginning to grasp the concept of "limited hangout" as applied to BC patients and families. Spy lingo for when you can't rely on a fake cover story anymore, so you leak some of the truth while withholding key info. Am I on the right track?

I'll forewarn the oncologist of the vaccine I've taken before my first appt. I also have appts scheduled for my Allergist, Dermatologist (skin check) Dentist and Ophthalmologist in the next 2 months and will check with the oncologist on whether these appts should be kept or canceled. My post/nasal cough is on my list to bring up with my surgeon on Wednesday.

And no, I'm not being kind. You are. I'm pretty sure that I'm the senior of the two of us, but I really appreciate your taking the time to guide me through this scary time. Thank you

Icietla

You are welcome and you are very kind. Thank you for your kind words.

Yes. The (limited) bit you hang out (share or offer as explanation) both satisfies curiosity and works as a diversion from what you do not want them to know, see.

When you go to your health care appointments, you and your husband should wear the protective masks and gloves. There are sick people in those waiting areas. The Staff will be very understanding.

More soon.

notanisland

Will do. It's time to order masks and gloves.

Icietla

I strongly recommend that you think very long and hard about whether, with whom, and to what extent you should share your news with any others who do not need to know. It is entirely possible that you might get through your cancer treatment without others (having no need to know) knowing anything about it.

Please read through this linked discussion thread carefully. I will soon put on links to some more discussion threads I think you should read. Let me know when you have had enough of that.

https://community.breastcancer.org/forum/152/topics/833272?page=1

That lady in the corner house over there (indicating over to my right) thinks any ailment can be cured by rubbing a potato over the affected body part/s. She is a gossiper. [Am I a gossiper for saying that?] That lady and her husband who live over there (indicating back behind me) think a daily dose of vinegar and cinnamon is capable of preventing and curing any serious illness. That lady who lives over there (indicating over to my left) had breast cancer about ten years ago. She is a gossiper. Her cancer was treated with lumpectomy and radiation. Sometimes she mentions it. A few months ago she was talking to me and my husband about it and telling us that breast cancer patients who have mastectomy surgery are "stupid stupid stupid." [You will understand that for many patients, mastectomy surgery is the (only) appropriate surgery option.] We just listened to her and acted clueless. If news of my cancer were generally known, there would be a steady stream of single women bringing cookies and casseroles for my husband.

Consider.

https://www.youtube.com/watch?v=dky2n83VuvY

notanisland

I'm already working on my "limited/partial hangout" story. Thank you for the links. Bedtime research

Icietla

You are welcome.

Because your tumor is known to be invasive, you can expect that some lymph nodes will be removed at the time of your surgery. At this linked web page is a form you can use to request a free lymphedema risk alert band. It will likely take several weeks to arrive by mail. Once you have the alert band, it would be a good idea for you to wear it for any medical appointments or procedures, as a conspicuous reminder not to use your at-risk arm for blood pressure readings, blood draws, injections, etc.

http://lymphedema.com/alertform.htm

notanisland

Appreciate the link for the lymphedema wristband. Who knew? Not me. I've learned so much today.

Already been through the discussion thread on private vs public. My situation - lots of extended family, longtime friends, work associates and projects/programs involvement - means I will have to let a number of people know something...but not everything. I'll keep the details to myself and a small group of my closest family and friends.

Love the musical advice!

Thanks to you I think I can get some sleep tonight.

Icietla

Rest well.

Here is another thread, a long one. I hope it will give you many laughs.

https://community.breastcancer.org/forum/102/topics/765586?page=1

Sjacobs146

I stronglydisagree with the advice to stay away from people before treatment has even started. There will be enough of that if/when chemo is started. It could be several weeks before treatment is started. Go, visit with your family, and enjoy. Between my diagnosis and the beginning of treatment I spent a lot of time doing things that I enjoyed with family and friends.

Grandi

I am sorry to hear of your diagnosis. I totally agree with sjacobs. There is no reason to stay away from anyone unless they are outwardly ill. Most people continue to work (and play) while undergoing the diagnostic procedures and chemo/surgery. I hope your journey is an easy one.

Bootscootin

I strongly disagree as well. I continued working in a large elementary school throughout treatment and spent time with family and friends. Also went out with friends and flew several times to see the grandchildren. Masks and gloves are not necessary. Just take basic precautions like washing hands frequently.

notanisland

sjacobs126, thank you for your input. I hope others will chime in. Neither of my doctors - PCP or Gyn - told me to avoid going out or seeing people in the week+ before my first meeting with the surgeon, so this came as a surprise to me. But then, everything is

notanisland

Grandi & Bootscootin, thank you both. I got 2 hrs of sleep, woke up anxious and scared and went straight to my cell phone to check this site. I'm calming down a little now...

cive

Until you actually start chemo, you don't have to worry about being around other people!  During chemo, most people are subject to low white blood counts which makes them susceptible to germs but until you actually start chemo, you shouldn't worry about it.  Go have Easter with your friends and family.

 

notanisland

Thank you, cive. I think I will!

You are all so caring and supportive and I know that you are each giving me your best advice based on your experience. I'm going with the majority on this one.

Beesie

Another one here disagreeing with the earlier advice. You don't even have a surgery date yet - it's way too early to be stopping your normal life and avoiding contact with family and friends. If you are more comfortable not seeing people, that's fine, but if you want to get out for a family Easter get together, do it. Of course it's better to avoid people who you know are sick, but it might be weeks before your surgery, so don't worry about normal contact.

As for who to tell, when to tell, and how much to tell, personally, I decided to tell very few people - just immediate family and a few close friends. That's what worked for me. I didn't need chemo so my diagnosis was easy to hide (big sweatshirts after surgery!) and I knew that the people I told would keep it to themselves and there wouldn't be gossip. But other women prefer to tell everyone, and if that works for them, that's great. If it will be physically noticeable that you are undergoing treatment, telling everyone is one way to ensure that you control the discussion and the dissemination of facts, rather than having it be a secret and subject to gossip. Another option is to tell just a few people, but designate them to communicate to others - that way you know that the information you want to get out is what's getting out, rather than inaccurate gossip. And that shields you from some of the stupid comments that people inevitably make. You know yourself and you know your family and friends and how they will handle this, so do whatever makes you feel comfortable.

Lastly, with nodal involvement (assuming more than just micromets to the nodes), you will be at least Stage II but not necessarily Stage III. Staging uses the TNM system. "T" represents the size of the tumor - and when there is more than one tumor, it's the size of the largest tumor that is counted towards the Stage determination (the size of all the tumors is not added together). "N" represents the nodal status and the number of nodes affected. And "M" represents metastasis, and whether there is distant (i.e. beyond the breast and the underarm lymph nodes) mets. You won't know the accurate size of your tumor and the number of nodes affected until after surgery. So any Staging discussion until then is preliminary, also called "Clinical Staging". "Pathological Staging" is the staging that's done after surgery. Without distant mets but with nodal involvement, you will be Stage II (A or or Stage III (A or B or C). Only those with distant mets are Stage IV. Possibly your surgeon, but more likely your Your Medical Oncologist (MO) will determine what tests you should have to assess the presence of mets.

Hope that helps! And enjoy Easter!!

notanisland

Don't know what time it is in your part of the world, Beesie, but here the sun has just come up. So nice to read your message first thing this Easter morning. With my non-oncology docs msking reference to Stage III and metastasis I have let my fears get ahead of things - even though I've read about staging on this site. Thank you for explaining it so clearly - and helping me to see that at this point I can do all that I normally would do. And I will. Until my yet-to-be-met surgeon and yet-to-be-determined oncologist say otherwise.

Happy Easter to all of you - BCO, Mods and new friends

Kicks

I too strongly disagree with staying away from friends, family and stopping living your life as usually lived at least prior to TX (treatment). There will be plenty of time for that in the future - if YOU need to.

It is great to seek all the information/experiences each of us had had BUT they are what others experienced and each are unique to each of us - not what everyone will experience exactly. Also our Drs are each unique and not all TX all of us with exactly the same regime, even with the same DX. We each enter TX with/or without other health issues that can/will have effect on what is the best total TX plan from our Team.

You said you have lymph node involvement so from all I've been told/read, as long as they are within the breast area (including axillary) that means Stage III, not metastatic. Metastatic means that the cancer has spread to other organ/areas. This will take future Scans (CT/MRI/Bone/PET with contrast) to check for possible spread. (DEXA tests are for checking bone density if heading into possible (or have) osteopenia or osteoporosis.

Vaccination - I was told to get my flu shot while doing Chemo but was told to hold off on getting the Shingles vaccine til a while after end of TX. Some vaccines are killed virus, some are modified live and it makes a difference.

Was told no multi vitamin/mineral during TX but was given approval for my Vit. D and Bs. I had to start taking K (Potassium) during adjuvant Chemo as my levels plummeted 1/2 way through and still have to take it yrs later.

I had no infections at all during TX and went any and everywhere I wanted to and did a lot of 'stuff'. My blood count stayed good throughout. I have dealt with massive sinus infections all my life (every few month) but had none while on Chemo and in the 7+ yrs since end of TX, I have only had 2 minor sinus infections. As it's been explained to me, while chemo can (and does for many) 'wreck' the immune system - for a few of us it 'kicks it into a 'higher gear'.

Be sure that you see/talk to all of the Drs on your Team (Surgeon, MO/Chemo Dr, RO/Rads Dr) and your case has been presented to the Tumor Board at your Facility before any TX is started. It is becoming more common for neoadjuvant chemo (pre- surgery) to be the first line of TX especially when nodes are known to be involved. The object is to shrink it, get good margins and some times a complete response pre surgery.

While LE (LymphEdema) is certainly something that you do need to become well educated about - at this time there are a lot more pressing 'issues' to get answers about immediately.

Get a notepad (or more) and keep it handy to write down every question you come up with to ask your Drs about. Make extra copies to hand to your Drs - they may be able to combine several questions in one answer. If you don't understand what he/she is saying, keep asking until he/she explains in words YOU understand (especially if he gets 'aggravated) as it is your right to be told in words YOU understand. Use your smart phone to record what he/she actually says so that if you have questions later as to what was actually said - you can review it as needed.

Don't try to learn everything at once or before you have a more complete DX.

Get all the info/experiences you can - but remember that there are no ABSOLUTES when it comes to any of the types of BC or what you (or anyone else individually) will experience.