ONCO score gray and ???

lemonjello

I know there is an onco post, but the women are younger.  I need help because I have a 22 onco score and two docs say no chemo, my gynecologist thought maybe yes to chemo.  However, my problem is at my age I have a stent in my heart, just had angioplasty about 8 months ago, and I have type 2 diabetes and kidney disease stage two.  I am not some otherwise healthy younger woman about to take on chemo.  I have cardiac arrythymia and high blood pressure too.  The part that scares me about not having chemo is the grade 3 of my tumor, but the onc sez that is subjective grading by a pathologist.  I understand that chemo only lowers my chance of recurrence about 2 percent.  My radiologist says chemo can be overkill in my shape.  Let's face it, I am in poor health irregardless of breast cancer.  But I wonder since it took so long to get my diagnosis and surgeries past, 6 months to be exact, could it be necessary to do the chemo?  I change my mind about every hour!  Yes, no, yes, no .....if I had known that I would fall into the intermediate area at 22 which equals 14 percent of distant recurrence....I would not have taken the test.  It hasn't solved anything with all these doctors failing to agree.  In case you're wondering why it took so long....found the lump day before Thanksgiving, all the doctors were on vacation or booked, holidays were solidly booked or surgeon went on vacation , excisional biopsy done on Jan 22, 8 weeks later second surgery for clear margins and sentinal node biopsy....contura balloon put in 3/25, pulled out 3/30 because it caused a large hematoma and then the oncs thought of the onco score which took two more weeks up and i have until tomorrow to decide, chemo, or rads plus Arrimadex.  Bingo, six months later, two surgeries later, still deciding treatment.  Very anxious.

Merilee

What is you gut telling you?

idaho

Lemonjello- if you don't mind me asking how old are you?  Boy, you have been through the wringer haven't you?  I'm sorry you had to wait so so long to get everything done.  Does your onc meet with a tumor board?  You might ask him to put your case on the table.  Your stats are just like mine except I am a grade 2. I opted to decline chemo. I am right in the middle of radiation and then going to take tamoxifen and the shot to shut down my ovaries. I am very hopeful that I am doing the right thing. I do know that chemo is hard on your heart.... I don't think I have helped you any, but want you to know I am thinking about you....Tami

TenderIsOurMight

So sorry you have such a weight on your shoulders. It is best for your oncologists and radiation oncologist to suggest a well-thought out and timely plan.

One point worth mentioning as I see it is the Oncotype DX includes a "proliferation" value, i.e., a rate at which the bc cells were dividing. Is this high, average or low? I think subcategory values are given.

I ask this because it's true that of late, more emphasis has been put on hormonal treatment with an ER+breast cancer. Some evidence has surfaced that ER+ cancers don't respond as well to chemotherapy. But, the caveat imho, is that these are the slowly proliferating or perhaps slow-intermediate proliferating breast cancer left over cells. Not the high or intermediately high proliferating bc left over cells. That's where that Oncotype DX of 22 may truly help you and your oncologists: what was the Ki-67 and other proliferation values? If proliferation values where high, then it would not be uncommon to recommend a non-heart affecting chemotherapy. One such regimen is TC (Taxotere and Cytoxen). Do you suffer from a neuropathy from diabetes? This should be tested for and monitored if chemotherapy is given, and you should know that the Taxanes are associated with sensory neuropathy so particulary if Taxotere is considered.

That said, chemotherapy is tough on the liver, the kidneys and the bone marrow immune cells, amongst all other toughness. Diabetes poses a special potential complicating factor, as your immune function is already compromised some. Here's where excellent sugar control is advisable. Is this feasible for you and your team? Do your sugars tend to be controlled so that your hemoglobin A1c is usually normal ranged? Is your kidney damage from diabetes, and such that your serum creatinine and BUN (blood urea nitrogen) are elevated significantly? These factors weigh hard into the decision for or against chemotherapy. Will Neupogen support be given, to ensure your white count is maintained during chemo? Will Erythropoiten be similarly given if necessary to maintain your red count so your heart function remains ideal?

You have a right to get full information, especially in light of your delay of treatment. Yes, chemotherapy is given before radiation to cause any micrometastatic disease in the body and left over breast area to be killed. Given the length of time from diagnosis, and the looming question of whether to undergo chemotherapy, it seems reasonable in your decision making to consider a PET scan to ensure no overlooked disease which may be treated by the very chemotherapy which has been not suggested by your oncologists.

Hope this is not stirring the pot more, but rather reinforcing your line of thinking. A quick telephone consultation by a university breast center or Comprehensive Breast Cancer, placed by your main oncologist may help give advice and answers you so wisely seek.

I will keep you close in my thoughts such that the knowledge and peace you so seek will come via further addressing of your questions. Don't loose hope: surgery removes most of our cancer so there is time now to address over the next days if chemotherapy is for you.

My best to you,

Tender 

lemonjello

My age is 65, and it took 5 months so far, not six.  I can't add i am so mixed up!  I made my mind up to spend 48 more hours making this decision.  I am going to see my family doctor and my cardiologist on Wednesday to get their opinions.  Thank you for your help.  My gut tells me the chemo is a good move, but my kidneys are stabilized and my blood sugars have been high from the stress, i don't really feel strong right now.  I am worried about the kidneys.  I have a gfr of 50 which can easily slip into danger zones.  The onc wants to give me CMF if I choose chemo.

I understand CMF is no picnic, but a little safer for someone like me.  My radiologist warned that even CMF has a 10 percent chance of giving me luekemia.  But if i worry about 10 percent chance of side effects, shouldn't i worry about a 14 percent recurrence rate?

lemonjello

So far the decision is to do hormone and radiation therapy, no chemo.  My family doc called the onc twice and got more info, facts, and called me twice.  It was good to talk it out.  My feeling is i am going without chemo.  I'm not in good shape for it.  I don't want to come out of it and end up in the cardiac unit with a heart that is failing.  I'll take my therapies now, get checked out completely in October and go from there.  It was great to have this board to turn to.  Thank you all.  My family doctor told me his sister skipped the chemo as well due to a compromised heart and she is doing fine.  I got the five year survival speech too.  I'll take five years for now and be happy.  At 65 with all that is wrong with me, I'll be lucky to make 70!!  My girlfriend told me a horror story about a woman who opted for chemo.  "They" overdosed her and she died.  When I began asking around the normal places, i got lots of horror stories.  This board gives you some solid ground to stand on.  That's why i turn here so much. 

jeanbean

lemonjello--congratulations on making your decision; that feel like a huge relief. It sounds like a very reasonable decision.

p.s. why does everyone insist on telling us horror stories?!

PatMe

Goodmorning everybody!

I'm starting chemo May 7. And i am just wondering if this is overkill. My oncotype score was a 23. I'm 58- so I know younger women usually have chemo with that score. But what about us older Ladies. I'm having CMFx6, which I understand is not a bad chemo. My onco thinks I'll sail right through it. And he said we could talk about it if I don't. But I'd like to know what other people choose to do.    .

Merilee

ParMe

Can I ask if you had a matectomy or a lumpectomy?

PatMe

Merilee- I had a mastectomy.

Merilee

I had a double mastectomy, with a 1cm lump in the right breast. Had large clean margins.

My ONCO score was 19 and my BRCA showed no genetic predispositon. Negative nodes. No family history

I opted for Tamoxifin but no chemo. I am 49

PatMe

Thanks Merilee- It really is a hard decision to make. I think I've changed my mind 20 times since Monday.    

Merilee

You are so right.  It is a very difficult decision. But once it is made and in motion you should feel much better.

lemonjello

Well, i changed my mind.  Starting chemo Monday, T/C once every three weeks until July 27.  I know this is a different program from what is on the boards, but wish me luck.  I couldn't feel safe without the chemo follow up to the surgery.  I just felt because of my grade 3 and my onco score being in the gray nowhere zone, that i had to be aggressive.  Hope i survive this without too many problems or any permanent damage to my heart.  T/C supposed to be easier on the heart.  I made this decision with my onc after a hour's worth of conversation.  He was great in explaining to me and he was pretty honest.  He said if he were in my shoes, he'd be confused as to what to do too.  But he said something that really mattered, he said, "a 14 percent risk becomes a 100 percent cancer  if you find out you've got a recurrence!"

Anonymous

This article from The American Diabetes Association discusses the finding that diabetic women who receive chemotherapy for breast cancer are at significantly higher risk of serious adverse side effects.

http://www.diabetes.org/diabetesnewsarticle.jsp?storyId=19916365&filename=20090416/reuters20090416health00000013reutershealthEDIT.xml

Diabetes appears to have an adverse effect on complications and outcomes of chemotherapy in older women with breast cancer, according to Houston-based researchers.

"We found that diabetic patients with breast cancer have higher rates of chemotherapy-related toxicities," Dr. Sharon H. Giordano told Reuters Health.

Using a Medicare database, Giordano, of The University of Texas M. D. Anderson Cancer Center, and colleagues identified more than 71,000 patients aged 66 and older with breast cancer.

Almost 12,000 were treated with chemotherapy and 21 percent of these patients were diabetic. Those with diabetes, the researchers found, were more likely to be hospitalized because of chemotherapy-related toxicity, infection, fever, a drop in infection-fighting white blood cells, and anemia.

Diabetic breast cancer patients were also 32 percent more likely to be hospitalized for any reason and were 35 percent more likely to die than nondiabetic women.

In patients who did not receive chemotherapy, breast cancer-related death rates were similar in diabetics and nondiabetics. However, in the chemotherapy cohort, it was greater in diabetics.

This is one of those times that you have to decide which risks you are more willing to deal with since every potential plan of action carries some risk.

I chose not to do chemo, at least in part because I was concerned about the potential for significant harm from the chemo due to my diabetes which at that time was a new diagnosis for me.  I have been on Tamoxifen for a year, and have adopted a much healthier lifestyle in general, including losing a significant amount of weight.  I feel better than I have in years, so far, so good.

Merilee

lemonjello

I am glad you are at peace with your decision.  Good luck to you.

thegoodfight

Hi Lemonjello and PatMe,

We each have to make our own final decisions but I am going to jump in with my story in hopes that it might help you somewhat.   BTW PatMe you and I have very similar dxs.  (see my signature)

My onco score was 18 and after much discussion I made the decision to go forward with chemo.  Since I had a lumpectomy the chemo was followed by 35 rads and I am now on arimidex.  I kept changing my mind also, but the one question kept haunting me................would I be sorry in the future if I did not do everything I could do now.  I did it for that reason and for my husband and my kids so I could look them in the eye.

I finished chemo Jan 6th and although it was doable I am not without side effects.  After two tx of TC we had to change me to Taxol because of an allergic reaction to the taxotere.  I had a very bad case of glove syndrome, which is the peeling of your hands. In addition, I developed mouth thrush and neuropathy and still have problems today.   Actually yesterday, I found out from an ENT what we thought was thrush for the last six months is actually something called burning tongue syndrome and it may stay with me forever.  It is auto-immune and probably from my weakened immune system.

Here's the point.......................I can live with these side effects.  Sometimes I wonder if I am going to find more long term effects, but I know that I have given myself all the ammunition I could against the beast.  I agree with your doc lemonjello that the 14% becomes 100% cancer if there is a recurrance.

I am not trying to persuade either of you, I just wanted to add my experience that you might find helpful.   Besides the fairly low onco , my BRCA tests were negative and my margins and nodes were clear.   With all this, and all the treatment, I still have not gotten to a place yet where I feel safe.   It is still new and I still worry, so for me, aggressive treatment was the answer, so I wouldn't  constantly second guess myself.

Caren

PS  I think I should mention that I have stayed active doing exercise walking and I am back to tennis regulary (at least 4 times a week) although I continued to play somewhat all through treatment, except for two weeks toward the end of rads.

lemonjello

I am scared.  I have a stent in my heart that was recently placed there.  I have asthma, hypertension, low thyroid, cardiac arrythmia, diabetes insulin dependant type 2, interstitial cystitus, kidney disease stage 3, i weigh 290 pounds and am 65 years old.  Do you think I could survive another round of cancer?  I don't and that's why i am trying to knock this out of the ballpark now so i can live in peace for a while.  It will be a good lesson for my daughter to see me tough it out.  The doctor didn't tell me not to do chemo, he just left it up to me.  I know some of the SE can be permanent.  My heart and kidneys will weaken further after this.  But i can't fight for my life five years from now because the life threatening illnesses i have besides cancer are eroding my health anyways.  Diabetic women do die more from everything and anything.  Diabetes is a nicer form of cancer in a way.  It kills without fanfare and fanfear.  Cancer on the hand, well cancer sucks.  My grade 3 has me worried.  My onco score at 22 was iffy.  My doctor team of four could not advise me.  Inform me, yes.  But in the end, my informed decision is no more than a glamourous guess.

TenderIsOurMight

You will be very, very closely monitored, lemonjello, during the entire time and weeks after. You have your general doctor already on board, and so your sugars can be kept in normal range with good effort by all. Of course you're scared. It's an educated risk to benefit which you've truly thought through and have reached a reasonable decision. I would do the same as you.

 

You have your team in place: oncologist, generalist, cardiologist, endocrinologist as needed. A stellar effort by all will certainly lower the risks to you.

 

Please post if you wish while you're going through the chemotherapy. I had taxotere myself and cytoxin on a three week schedule. My taxotere dose was 100mg/m2 which was intense. LuAnn posted a thread on neuropathy meds including some B vitamin information. It might be wise to ask someone in your oncologists office to check you feet and hands before the first doses to get a baseline, and then with every dose and see what they advise as to vitamins. My neuropathy did not show until after the last dose, when I couldn't place my feet souls at night in the darkness. Oncologists can reduce doses if neuropathy becomes above grade 1 or 2.

 

We're all wishing you a safe journey and will be there to support you through this. Remember too, nothing is irreversible if you need be.

 

My best to you,

Tender 

lemonjello

Thanks to all for your replies.  Began chemo and so far, so good. 

mzmiller99

Thanks for letting us know!  Good luck!  Now you can rest assured that you've done all you can do.

Hugs.

Susan

lemonjello

Did not get a clear pap smear report, atypical squamous cells of undetermined significance, no HPV.  Makes me wonder if my decision to get chemo was really on target now.  Is there something brewing below the waist now?  Althougth the letter from the gyn sez it merely shows an inflammation of the cervix or vagina.  Well, i never had anything but a gold star on pap smears before, so this makes me nervous. So far my chemo has gone pretty well, functional for the most part, sleeping well, and it hasn't killed my appetite, which i was hoping for! LOL

shannon56

lemonjello -- are  you post-menaposal (there are women in their 60's who aren't) or are you taking tamox?  When my aunt was taking tamox her pap smears always came back as not normal and she always had to go back in 3 mos later for a second pap smear.  If you go to the American Cancer Society site and type in aytpical squamous cells it will probably bring up an article that clearly explains this.

Also, with your kidney problems drink lots and lots of water.

TenderIsOurMight

Hi Lemonjello,

From your signature, I see your breast cancer was diagnosed as a "ductal" carcinoma, one of the most common types of breast cancer.

PAP smears of the cervix and inner cervix (the endocervical canal) sample their "squamous" cells (cervix itself) and "adeno or glandular" cells (the endocervix).

Your report of atypical squamous cells of undetermined significance (ASCUS) is not uncommon and can reflect inflammation which then clears, as well as early change in the squamous cells of the cervix. It is unlikely however, imo, that if truly "squamous cells" this is related to your "ductal cells" of the breast, as the cell types are histologically (microscopically) different.

I know once bite by breast cancer we're always tense of further problems. I'm sorry for your troubles and am hopeful your gynecologist will help clarify this problem asap.

Keeping you close,

Tender 

DENTHOMAS

My onco score was 21 and it was decided that I would do fine with Arimidex.  I'm older than you and had a mastectomy in Dec 08.  I had one axillary node positive and 14 under my arm negative.  I had about made up my mind not to have chemo. I had ER+ grade one cancer.

swimangel72

Lemonjello - I had the same Oncotype DX score as you (22) with the 14% chance of recurrence, although my tumor was just Stage 1 & Grade 1 and no lymph node involvement. My onc originally said (with confidence after consulting with his tumor board) that I would NOT need chemo - just Arimidex (I was post-menopausal, 53 years old at time of dx.) I was a happy camper - I had already been through the mill with a mastectomy and free-tram reconstruction which caused a mrsa staph infection. Unfortunately for me, 10 minutes after my onc gave me this great "no chemo" news, he received a fax with my FISH report which showed the tumor was Her2+++.........so then he said there really was no choice, chemo was necessary in order to get Herceptin. I finished all my treatments last month and feel fine.

I'm only telling you this story so you know that an Oncotype DX score of 22 did not alarm my oncologist at all - perhaps because I did have a mastectomy, although I'll never really know for sure.

Good luck to you and I hope all your treatments get over with quickly and with no complications whatsoever!

lemonjello

Took my first round of chemo May 4.  Had some down days for a week or so, now i am fully functional and bald.  I feel amazingly well.  My SE were flushing, fast pulse, metallic taste, dry eyes, fevers.   The first week after was the most uncomfortable, now i am looking at the second round May 27.  My blood work is fine, my kidneys are stable, my bp is fine and my bs is normal.  I am very happy with my decision to do the chemo.  There were just too many delays in my treatment to feel confident with radiation alone.  I am still considering a bilateral mastectomy or at the very least, a breast reduction with the milk ducts removed.  I have big breasts and at this point i will never trust them again.  Why doctors labored thru two surgeries to save old floppy boobs is beyond me.  Breast conservation is now the extreme in my POV.  Years ago they did needless mastectomies and now they conserve breasts that should be considered for mastectomy.  And no, it was not up to me, the doctors insisted on breast conservation.  I've read a lot about these wonderful doctors that leave all up to you and talk over everything ...well my doctor was booked, busy, and blunt.  That is my breast surgeon.  My onc is different, he will listen and he takes time with me.  Unfortunately, i didn't have an onc until AFTER my lumpectomy. Big mistake.  Get an onc immediately.  Anyways, i am looking forward to finishing chemo in mid July and then getting rads in August.  Then i am told, i will begin Arrimadex.   By the winter holiday season, i will have completed my treatment and will plan to redo the breasts one way or another. 

TenderIsOurMight

Poof lost my post Lemonjello. SO glad to read your post and see you're doing ok on the chemo and all systems go. I suspect your oncologist is probably watching you like a hawk to ensure no collateral problem: it's in everyone's best interests to have as seemless an outcome as possible.

Glad too you have such affirmation with your decision. You hit a homerun on your breast surgery comments: loved how you put it.

Well, better keep this short less I loose it again. Just very happy and relieved your doing by and large well, and please do keep us updated. I'm pulling for you.

Best,

Tender

elisheva

Hello ladies,

I am new to this thread. Came here because I have to make the decision on chemo - yes or no. My Onco score is 26, recurrence score 17% and age 67. Health is good but still wonder if it's wise to start with chemo. Saw the Oncologist for the first time yesterday, and with these numbers they just won't give you a recommendation but leave the decision up to you! Isn't that a bummer? My family is in favor of chemo, but then it's not THEY who will suffer the SE's. Any advice from your own experience is very welcome! I forget to add that I had a lumpectomy (with re-excision.)

And to lemonjello - all the best to you! You can stop chemo in the middle if you have to!

Ellie.

knowledgeforpower

Elisheva,

I am 58 and my Oncotype was also 26.  My oncologist receommended chemo, but I have read others' posts where they were give the option.  I had 4 rounds of adriamycin/cytoxan.  I was given a choice of 3 regiments and chose that one because I didn't not want the bone pain and neuropathy from the other choices.  Talk with your oncologists about your drug options and their side effects to help you decide.  Also, ask about taking an aromatase inhibitor since your are ER positive. I had a problem with a very low white count after the first round, but the Neulasta shot kept that from happening again.  I had fatigue and loss of appetite for about 4 days each chemo session. Everyone reacts differently to chemo. My last was 5 weeks ago and I have recovered (except for my lack of hair).  Talk with you doctors and family. 

Dx 1/16/2009, IDC, <1cm, Stage Ib, Grade 3, 0/3 nodes, ER+/PR+, HER2-

lemonjello

So far I have had three rounds of taxotere,cytoxin and doing amazingly well accept for the first week after infusion.  The third round was roughest.  I did not have pain with the first two neulasta shots but the third one caused pain in the right arm, armpit, ribcage.  I was weak and felt awful for the first week.  Today i have recovered, was able to sit up, shower, cook and do pretty well on the computer and around the house.  I fear the fourth round, but i am told if you discuss your se with the doc prior to infusion, adjustments can be made.  I lost nine pounds total so far, no nausea or constipation.  My fourth round is July 9, bloodwork so far is good, drinking at least two quarts of water per day, and then in August i get two weeks off before whole breast radiation for 6.5 weeks daily.  Then comes the work up and mammo and conclusion of just where i am in all this treatment.  I have had so many people support me with their prayers and my husband has been the best caregiver i could have asked for.  I am not sorry i chose to do the chemo.  I am convinced it was necessary.  I will do the last round if my doc gives me the ok.  I am bald now and no body hair either.  Low energy, but feel positive about it all.