Ferne how are you?

Boo46

Ferne,
Thinking of you and wondering how you are feeling. Do you have a plan set up yet for treatment?
Hugs,
Sue

fd411

Hi Sue,

I'm sorry, I didn't see this post until today. Happy Mothers Day! Are you a mom?

I'm doing OK.

I got the report of the CT scan. 3 nodules in each lung, all 1cm or larger, they are in the upper and lower lobes, and there is some kind of shadow somewhere and some thickening in the pleural something...

The med onc has ordered a PET scan to see if the BC has spread anywhere else. He suspects the liver as well.

After the PET scan, he might have to do a lung biopsy, and after this I think we'll have a treatment plan. I guess there is still that 1% chance that these are benign, although they are pretty sure it's mets.

Thank you for thinking of me,
hugs to you,
Ferne

Boo46

Praying for good results from your PET scan and biopsies. 1% is better then 0%.
I hope they are doing something to make you more comfortable while you are waiting for all the tests.
Yep I'm a mom. 1 14yr old boy. How about you? Happy mothers day to you also.
Please keep me up on how you are. Been thinking about you every day. If you ever want to talk PM me or let me know and I'll send email, phone # whatever.
Hugs,
Sue

nosurrender

Ferne, waiting with you!!!
May your tests come out well and if they do not- then we will fight this beast back into oblivion together!
Love,
g

Raye99

Praying for you, Ferne. I just read the original thread you had posted earlier this month and am so sorry to hear the news.

Please let us know what the PET scan uncovers.

Thinking of you,

Raye

cmb35

Does anyone know Ferne well? She had an appt on Mon or Tue this week, and she hasn't checked in, I'm a little worried about her.

Ferne, hope you are doing OK, I'm thinking of you and sending you hugs.

fd411

Hi Everyone,

I'm doing well. I had the PET scan and I got the report from my surgeon during my follow up appointment. I don't see the med onc til June 11th. Surgeon told me that now I have 6 nodules in one lung, 4 in the other, tumors in the chest or in the lymph nodes in the chest, some pleural based lesions abutting the chest wall. Something like that. I'm still a bit confused by the terminology and need to have it put in layman's terms. I'm going to call tomorrow about my blood work results. I guess the next step will be to meet with the onc to decide if I need biopsies, or if the results from the PET are conclusive.

Thank you everyone for thinking of me,

Hugs to you all,
Ferne

Boo46

Hi Ferne,
Thanks for checking in. I've been thinking about you and wondering about your results. So did the PET show that disease is confined to the chest? I know you also said they were worried about your liver.
Hope you are feeling ok and your pain is under control.
Please keep us up on how you are.
Hugs,
Sue

cmb35

Ferne - good to hear from you, why do you have to wait so long to see the onc? Hope you get good news re blood tests, and that you are able to quickly get started fighting this lung issue. Hugs to you.

fd411

Hello everyone!

Jeez loueeze I feel like crap today!

Onc said the blood work is fine, he's afraid to do a biopsy because the lung might collapse. He says it's in the neck nodes too. The liver is clear. Oy Vey, I'm confused. I asked about a biopsy in the neck nodes then...My appt is on the 11th from when I scheduled it at my last follow up. He's double and triple booked then on vacation.

But I still am feeling ill. I saw a post in the help me get through treatment forum and the poster had nodules in the lung that they thought were mets. The nodules didn't respond to chemo but her breast tumor did. The docs decided it was sarcoidosis. So I google sarcoidosis and hmmmm....it can produce granulomas(?) and symptoms that mimic lung mets and can also make you feel like crap depending on where it is. It can cause itchy skin, weight loss, fatigue, general malaise, even night sweats (but I know mine is from chemopause!)and I have been experiencing those things for quite some time. So I'm going to call my regular doc cuz I don't feel good and ask about that. When I see the onc, I'm going to ask if they even thought to rule that out.

Thank you so much for thinking of me,

Hugs to you all,
Ferne

QueenSansaStark

Good luck, Ferne, and I'm sending good thoughts your way.

nosurrender

Ferne, I have two lung nodules that they are not calling mets.
At first they said they were too small to biopsy and since they had not seen much growth in them they were not going to think cancer. They told me that many many people have lung nodules and are perfectly fine. They believe mine were caused by the rads I had.

Anyway, I got scanned again all over with my new dx of BC and the nodules were still the same. When this is all over I am sure I will be checked again. If they are the same then they are plain old lung nodules. If they improved then this round of chemo got them.

But you are RIGHT- lung nodules are not always cancer.
GREAT NEWS ABOUT YOUR LIVER!!!!!!!

I am telling you - you are going to beat this thing.

Love,
g

PAMLIGHT2

Would you share with me when you were diagnosed and what it was? I am still on the fence with rad or chemo. I am beginning to think I am more afraid of not making a decision. Chemo doctor doesn't seem to have a sense of urgency to start. I had lumpectomy 4/4. Dx with state 1, grade 3, clean margins, 1.1 cm er-/pr-, neu2-, si my problme is still do I do chemo and risk the side effects, adjuvant online says 4 out of 100 benefit from treatment. Am I understanding the results right? Does that mean the other 96 saw no change. I an really confused. Can someone help me interpret these results??

Thanks,
Pam

fd411

Hi Pam,

I was diagnosed in April 2006 with Invasive Ductal Carcinoma. Stage II, Grade III. My underarm nodes that were biopsied were positive. I'm triple negative and had my chemo before lumpectomy. I was told Stage III after the final pathology came back. I had clean margins but 6 positive nodes. I didn't have anymore chemo after surgery but had radiation.

I do know that if you had positive nodes, the onc would probably push more toward chemo. Being a triple negative, chemo and rads are all we have. If the onc gave me chemo as an option, with me knowing what I know now, I would go through chemo as extra insurance against any of those nasty little buggers that might have escaped from the main tumor. My only side effects still lingering from chemo are hot flashes and no period.

Ferne

cmb35

Pam

I had a very similar dx as you (1.1 cm, clean margins - well, after re-excision they were clean!, triple neg, but I had one pos node - was positive with what they call "micro mets" meaning just a few cancer cells present) and I had surgery, chemo and rads. Knowing what I now know about triple neg bc, I'm glad I had the chemo. It was no walk in the park, but it's doable, and I like knowing that I did everything in my power (well medically anyway) to keep this beast at bay. I know my onc recommended the chemo due to the triple neg, the positive node and my age (41 at dx)

Best of luck to you.

Ferne - how are you doing my friend? I'm thinking about you every day - hang in there.

NarberthMom

Pam --

I had a 1.5 cm tumor, no node involved. My adjuvant online number was 16. In other words, 16 out of 100 women are alive and without cancer because of chemotherapy. It was a no-brainer for me to do chemo. We triple negs have nothing besides chemo to get any cancer cells that may be lingering.

You can get a second, or even third, opinion. You can also ask for your case to be discussed at your hospital's tumor board (if they have one).

BTW, I just finished my chemo last week -- dose-dense AC followed by dose-dense taxol. I'm glad that I did all that I could to fight the cancer.

Hugs,
Hillary

fd411

Hi Colleen!

Hope you are doing OK!

I'm hangin'and waitin'to move forward with the what's next. The 2 oncs I need to see are on vacation.

hugs,
Ferne

nosurrender

Ferne, I would like to BRING YOUR DOCs home from VACATION!
Sheesh!

I LOVE your picture in the other thread. You look so great. And I love your kitties too!

Hang in there my friend!
Love,
g

susan_CNY

hate spammers, back to topic

Boo46

Oh man Ferne - waiting s@#ks!!!!
Hang in there.
Lots of hugs,
Sue

cmb35

Ferne

I know they're people as well as doctors, and that they have lives too, but that is really frustrating! I hope you're able to go into "the zone" as you wait, so you're not thinking about it and worrying.

Thinking really good thoughts for you...

2curvy

Dear Ferne: I too am triple negative and began this journey in March. All my thoughts are with you. You are courageous and strong.
Love,
Colleen (another one!)

Boo46

Ferne
Have you seen onc yet? Thinking of you.
Hugs,
Sue

fd411

Hi Gina, Colleen, Colleen, Sue,

How are you all doing?

Thank you all for thinking of me!

I see the onc tomorrow.

I saw my medical doctor yesterday, and he did what I needed most right now. He showed me where all of the affected areas are: Upper, middle and lower lobes in both lungs, neck nodes on both sides, an area right in the middle of my breast bone, chest wall and some nodes on the right side and along the pleural lining on the right side. Doc said because of the way things are scattered about he's pretty sure it's mets. I'm thinking that even if the med onc is worried about biopsying the lungs he has other places to try. I also have had a nodule on my thyroid since before radiation, but it wasn't a concern at the time.

I thought I got radiation in some of those places, so I have to ask the rad onc about that.

If all these places have mets, this bc isn't playin'! It's been messing up my immune system, too. I get sick so easily. I'm fine one minute and then one hour later I have a fever, aches, chills, nausea, headache...weird and annoying! Then the next morning I'm OK again. Then maybe 5 days later, the same thing. I feel like crap alot and I haven't even started chemo BUT, I can still work, and that's so important to me. And I am so thankful when I have a good day...something I took for granted before.

OK, I'm sorry for whining but just had to let it out!

I'll let you know what chemo dude has to say tomorrow.

Hugs,
Ferne

bobobradley

I have a very similar diagnosis. I have two more treatments of chemo left and then a scheduled lumpectomy. I am nervous about the surgery but I am looking forward to having this behind me. Dawn

fd411

Hi Dawn,

I was very nervous about my lumpectomy. It was my very first surgery so I was scared. But all I remember was switching tables in the OR and seeing my surgeon and anesthesiologist. Then I was waking up in recovery. All in all, the surgery was not the hardest part. I had a drain, and had to be careful of not working my arm too hard in the beginning.

Ferne

cmb35

Hey Ferne

Well, I'm glad you are getting some specific information at least. I wish it "seemed like" better news, and I'm still hoping the actual biopsy comes back B9. Good luck today and please keep us posted.

Whining? Hardly!!

fd411

Hello Everyone,

I still am in limbo with all of this. Onc told me he's quite surprised at how quickly this bc came back/spread. He said I had an extremely aggressive chemo regimen. He still doesn't want to biopsy the lungs, he's worried that it will cause me lots of problems. I saw a picture of the pet scan and the areas of concern. He suggested that I get a second opinion, but the appointment for that is July 11th. Far away.

So in the meantime, I need to get a port and I see my onc again on the 2nd, but I'm going to see if he can at least come up with some sort of plan for chemo or get me started on something. I figure what can that hurt if I see the other onc and don't like what they have to say and come back to him anyway. And even if I change oncs I don't think a change in chemo meds is going to do me in. That way, least this stuff isn't sitting around just growing. I had the first CT scan that found the growths in my lungs on May 4th. It just seems to be dragging on.

Ferne

TenderIsOurMight

Dearest Fern,

An old adage in medicine is to always confirm via biopsy any new lesion in a cancer patient, even if it's felt to be metastatic from the original. Otherwise mistakes can happen in diagnosis.

Since you live in New York State, why don't you call Oncology at NY Memorial Sloan Kettering, and ask for (or have your oncologist ask for) an emergency consultation/second opinion. A Ms. Peggy Kiss is a wonderful MSK intake person who would be able to most likely tell you how to do this. Her number is 1-646-497-9064. Dr. Larry Norton is still the head of Oncology I think and certainly he or his fellows would be able to advise you and your oncologist. And Cliff Hudis is a remarkable oncologist who is in charge of a clinical trial whose information is below. For biopsy of the lung, Heinem Cody an oncology surgeon there, should be able to steer you in the right direction. Your oncologist also may be able to complete on line a formal second opinion request for MSK and send it right in. These major centers truly want to be used for second opinions, so turn around is quicker. Go to www.mskcc.org and look under new patients. The site has a section on accomodations.

Given your circumstances, and for some peace of mind/action, an appointment a month away seems to far. Sometimes, presenting at an emergency room gets these answers sooner than later too (hint, hint).

Keep us posted, and we're thinking of you now.

Tender

Find a Clinical Trial

A Phase II Study of Bicalutamide for the Treatment of Androgen Receptor-Positive, Estrogen and Progesterone Receptor-Negative Metastatic Breast Cancer
[Protocol 07-022]
Full Title :
BICALUTAMIDE FOR THE TREATMENT OF ANDROGEN RECEPTOR POSITIVE((AR+), ESTROGEN RECEPTOR NEGATIVE, PROGESTERONE RECEPTOR NEGATIVE (ER-/PR-)METASTATIC BREAST CANCER PATIENTS: A PHASE II FEASIBILITY STUDY
Purpose :
Most breast cancers are sensitive to changes in the amount of estrogen in the body. Hormonal therapies that block estrogen can stop those types of cancer from growing. Some breast cancers do not respond to these hormonal treatments because they lack the receptors for estrogen and progesterone. Some of these estrogen and progesterone receptor-negative cancers do, however, contain a protein called the androgen receptor, and behave like estrogen-sensitive cancers.

Studies show that blocking the androgen receptor can slow the growth of breast cancer cells that contain this protein. Bicalutamide is a drug that works by blocking the androgen receptor. It is commonly used to treat prostate cancer, but has not been evaluated in patients with hormone receptor-negative, androgen receptor-positive breast cancer.

The purpose of this study is to assess the effectiveness of bicalutamide to treat metastatic breast cancer that contains the androgen receptor but not the receptors for estrogen and progesterone.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following:

Patients must have a confirmed diagnosis of metastatic (stage IV) breast cancer that contains the androgen receptor but not the receptors for estrogen and progesterone.
Patients may have had up to two prior regimens of chemotherapy for metastatic disease. At least 2 weeks must have passed since completion of any prior chemotherapy and 4 weeks since any major surgery and entry into the study.
Patients must be physically well enough that they are fully ambulatory, capable of all self care, and are capable of all but physically strenuous activities. As an example, patients must be well enough that they would be able to carry out office work or light housework.
Patients must be age 18 or older.
For more information and to see if you are eligible for this study, please contact Dr. Cliff Hudis at 646-888-4551.

kate99

that is interesting information. i am sad to say that neither of those doctors take new patients. i know because i tried. i live in nyc.

cmb35

Ferne

I'm not sure where you're being treated in Rochester, but is there a "major cancer center" near you where you could get a second opinion? I was able to get into Dana Farber in Boston for a second opinion really fast, and was even able to request the appointment online at their web site.

I'm so sorry this is just dragging on and on for you, the waiting has got to be torture. Hang in there...