Had Lumpectomy two weeks ago and need some questions answered

florida2015

Had Lumpectomy two weeks ago and need some questions answered

florida2015

Hi, not sure if this is the right section, but my nodes were cancer free and I am scheduled to see a radiation oncologist this Friday and then a medical oncologist the end of the month. I am having someone call me back because I don't understand the need to see both. Unless my oncotype score shows very aggressive cancer, mine was tiny, I am going to do just radiation.

Can anyone shed some clarity on this issue. Thanks, K

fizzdon52

Hello there. You may need to go on hormone tablets, this is what Oncology Doctors are for - not just chemo. I didn't have chemo but I have to see Onco Doctors regularly due to the medication they have put me on for 5 possibly 10 years.

Sjacobs146

fizzdon52 is correct, you will likely be put on Tamoxifen if you are pre-menopausal, something else if post. That is what the MO is for.

tgtg

Florida--The surgeon usually suggests seeing an MO, but whether you accept hormonal therapy from the MO is your choice. I saw the MO once, and she ordered the oncotype test for me; when she called to tell me my oncotype number, I said, "No, thanks. Good bye." If your surgeon orders the oncotype test for you, then you don't need to see an MO unless you want to.

This idea that you are "put onto" an anti-hormonal is erroneous. You can't be forced to undergo a treatment. Even the MO I saw that one time said that her job is to give advice, but not to pressure a patient into doing something. Her advice, however, was framed so as to scare me into taking an anti-hormonal, but that tactic didn't work, since I had done my research "homework." IT showed me that the risks (stroke, clots, uterine cancer, etc.) totally obliterated any benefits of an anti-hormonal drug for me with my rather non-threatening tumor pathology and would have added a mere two months to my 88 years of life expectancy without the drug! "No thanks."

momof2doxies

Cancer has no cure. It can come back anywhere and anytime. Yes you need to find an oncologist that you feel comfortable with because he/she will need to follow you the rest of your life. If you think that you can do this alone, you are wrong. Sorry, to be blunt, but that is what cancer is.

florida2015

Hi, yes that is exactly what the nurse told me today. How have you done -- and what side effects have you had if any?

Have you had bad hot flashes and moods from them. I was told many women take antidepressants at same time.

florida2015

tell me more about all of this - because I am scared to go on drugs for fear I will get uterine cancer. I dont have pathology report with me at moment its in another room and too tired to look at it, but bascially the tumor is very small - stage 1 - not even 1 cm. its invasive and I am Her positive.

Did you seek out a second opinion? If not, where did you get your research from since I have seen so many woman say don't rely on google information.

I am 60. A young 60 people think I am in my 40s although in the past two weeks since my lumpectomy I am mentally aged 1000 years!

fizzdon52

Hi florida, there are lots of different threads on here with people who can help you. I don't know anything about Her positive as I was Her negative. One thing you should remember is some people have no bad side effects from hormone therapy, where as some people (like me) have had some bad side effects. That's what your Oncologist is for, to decide on and help you get through treatment. Good luck with your treatment.

debiann

Florida, even though the tumor is small, if you are Her2+, chemo may be recommended. An MO will be able to explain your options. Herceptin is a chemo targeted specifically for HER2+. You may want to look into it before your appointment with the MO so you will be prepared to ask questions.

Antihormone therapy can be a VERY effective tool in preventing recurrance, so don't disregard it till you have all the facts. I'm guessing, that at age 60 you are likely post-menopausal. If that's the case you will likely be offered an AI (aromatase inhibitor) instead of tamoxifen. They work very differently and the side effects are not the same. I've found the anti-hormone therapy to be very tolerable. So far the only SE I've experienced is hot flashes and they are not as severe as they were during menopause. 

Good luck to you!

tgtg

Florida--Like you at a young 60, I was a young 71 at dx, and was looking at larger issues like stroke and clots, which could fatally and undetectably shorten my life expectancy long before b.c. would. Like you I was also stage and grade 1 with no nodes (but a larger tumor). BUT totally unlike you I was HER negative--your HER positive status puts you in a different category and opens the door to considering treatment at the very least,

In doing my research, I explored technical articles in respected and juried (peer-reviewed) medical and biotechnological journals only (JCO, JAMA, etc) and also government output (NCI, NIH, etc). You can find them on Google--you just need to sift through the pages of well-intended but not medically informed blogs, junk science, and advertising posing as "science" put out by pharmaceutical companies. Go to the researchers themselves!

By the way, it would help if you fill in your profile on the bco site and check the "make it publc" box. My first response to you would have been different, had I known your HER status.

knmtwins

Florida - the Her2 positive is the changer... You want to talk to an MO. You do not have a signature line, so I don't know what else. If you are ER+, PR+ and Her2+, there is an excellent board. We are the triple positive gals... https://community.breastcancer.org/forum/80/topic/...

In the last 10 years there has been TONS of research with Her2, so there are targeted therapies for it. For general info, Got to page 39 of the NCCN patient guidelines and it has the recommended chemo/targeted therapy list based upon what 'types' you have. http://www.nccn.org/patients/guidelines/stage_i_ii...

SelenaWolf

I have been on tamoxifen for nearly four years (I'm 54) and have had very few issues with it, although I know that some women really struggle with it. For me, it's been fine and continues to remain so. No hot flashes, no weight gain, no hair loss/thinning, no developing health issues.

Tamoxifen's uterine cancer risk is very, very small, but - if it concerns you - you need to discuss it with your MO and your PCP or OBGYN, to see if it's the right choice for you. You need to tell them if you have a family- and/or a personal history of uterine cancer/issues or heart disease/stroke. This, of course, may increase your risk of these side effects. If you decide to take it, see if it's possible to have regular pelvic screenings just to keep an eye on things. Because I have a very strong family history of heart disease/stroke, my MO put me on a low-dose aspirin regimen as a precaution against developing clots. I have no family/personal history of uterine/gynaecological cancers, but I have opted for yearly pelvic US to be pro-active.

If you are menopausal already, then an AI may be suggested instead, which doesn't have the risk of uterine cancer that tamoxifen does, although it can affect your bones/bone health. This treatment may not be right for you if you have a history of osteoporosis or other bone density issues. Your MO can answer your questions about that and will, probably, have several suggestions on how to maintain- and monitor your bone health during treatment. And there are several different types of AI's, leaving you with some choice as to what you want to take. Discuss them all.

Certainly, hormone treatment isn't for everyone, but you need to - at least - have a consultation with an MO (and, maybe, two for a second opinion) to ensure that you are getting the best recommendation for someone with your particular diagnosis. Prepare a list of questions before you go to see the MO, such as:

Why are you recommending hormone therapy for me? (Bring a copy of your pathology report.)

What kind of hormone therapy are you recommending (i.e., tamoxifen or AI)? (Ask for Product Monographs of each drug.)

What are the risks/benefits in my situation if I decide not to take hormonal treatment?

What are the risks/benefits in my situation if I do decide to take hormonal treatment?

What the most common side effects of hormonal treatment? (Ask this rather than "what are the side effects of hormonal treatment". This is because the list of documented side effects for any drug are ALL reported side effects for everyone involved in any/all clinical trials of that drug from Phase I through post-marketing trials. Only one person in 100,000 may have experienced, for example, sinus infection while taking a drug, but - because it was reported - the pharmaceutical product monograph has to include "sinus infection" as a side effect. This, often, skews public opinion into thinking that the drug is riskier than it really is because the resulting list of side effects seems very long. So, concentrate on the most widely-reported/experienced side effects to get a better idea of your own risk for developing them.)

What can be done to manage side effects, if I experience any?

The information that you will find on the internet may be either out-dated, alarmist, incorrect, or too general in scope to really help you decide what is the right choice for you with your particular diagnosis. That's why many of us here often say "stay away from Dr. Google!"; it can be horrendously confusing (not to mention frightening) when you are already reeling.

Only you can decide whether- or not to pursue hormonal treatment, but you need to - at least - talk about it with an MO (or two) to ensure that you are making an informed decision about what is right for YOU.

florida2015

Hi, just saw these responses and yes I will go fill in the information. So confusing and want to go in with educated questions. I have two appointments with back to back to discuss all this with radiation oncologist and med. onc.

WinningSoFar

I believe that I am better off healthwise with a full team of cancer specialists, all of whom I see periodically. That includes a MO, even if I'm receiving no therapy presently, a surgeon, even if I have no surgical plans and a RO, even though I don't need rads right now. That way I am kept up to date on all new treatments and all testing, which I may not think of myself. I was first diagnosed in 1999 and stopped seeing everyone for a number of years, and that was a big mistake.