Is this really necessary?

Haven't been through it (as I did both rads and Tamoxifen) but I wonder why if you are not taking Tamoxifen you are seeing an oncologist?   I see my surgeon for regular follow-ups, and the rad onc for radiation related stuff and the med oncologist specifically for the Tamoxifen.    Without rads and Tamoxifen, I would only be seeing my surgeon for follow-ups.

That said however, I do think that if you feel uncomfortable with this person and don't forsee it getting better, if you do indeed need a long-term relationship with them for follow-up, it might be time to look for a new doctor.

I'm from over the Pond in the UK - Hi.

We are treated under our NHS system which is free (well not really as we pay our taxes for it), but we are seen by the exact same Consultants who also treat private patients so we do get the same level of care.

The way it seems to be going here is that each case of DCIS is now treated individually so in my case of 9mm of grade 2 with 3mm margins rads wasn't deemed necessary.  DCIS is not tested for er/pr either so tamoxifen is not even on the table.

That said I still had to see an RO to be told no rads and an MO to be told no tamoxifen.

xx

It doesn't make sense for you to continue seeing an oncologist if you are not taking Tamoxifen.  Your treatment is over, other than mammograms.  You haven't really said what your reasons, were I'm curious if you care to share.  I did do Radiation and am on Tamoxifen, but mine was grade 3 with 1mm margins.  In the scheme of things also young and want to put this chapter behind me.

Good Luck!

Imdi, if I'd had your diagnosis, I would have made the same decision as you and I suspect my oncologist would have agreed.  And then there would have been no further reason to see the oncologist. 

With all the concern these days about how low risk cases of DCIS are being over-treated, I'm surprised that your oncologist is so adamant about your having rads and going on hormone therapy.  My recommendation is that if you would like to continue to see an oncologist, you find a different one.

fixzzdon52, are you familiar with DCIS?  There is debate as to whether DCIS should even be considered breast cancer in part because unlike all other breast cancers, DCIS is not life threatening.  Some cases of DCIS can be very aggressive and can present a high risk of recurrence as an invasive cancer - and these cases need to be treated aggressively - but the OP's case, with a tiny low grade DCIS and wide surgical margins, is not one of these cases and in fact is about as low risk as any diagnosis can be.  No oncologist should be worried about 'saving a life' in a case like this, because that just isn't a factor with this type of diagnosis.

Imdi, I think your reasons for not having Radiotherapy make perfectly good sense (after reading your latest post), especially your reasoning that if you have it now, you may not be able to have it in the future. Certainly sounds like you have done your homework and I wish you the best of luck for the future. 

Lmdi, 

I share your skepticism about hormonal treatment, even though I had an IBC (low grade and stage, though).  I, too, am post-menopausal (71 at dx), and did a lot of hard core research on the hormonals (which I have always been leery of, including the pill).  And I don't subscribe to the idea that "doctor always knows best," since medicine is more an art than a hard science, as many good doctors admit.   

While I did have radiation because of the invasive cancer, I met with a second rad. onc. when the first one was unable and unwilling to answer my technical questions about radiation and just stonewalled with stock responses about the cosmetic benefits of radiation (to a septuagenarian!).  The second rad. onc was confidence-inspiring, fielded all my questions, and even anticipated some of them!  She and I had--and still have--a great relationship. 

Before seeing a rad onc., though, I met with a med. onc., and presented her with two typed pages of questions and medical journal articles about hormonals and their long-term (and often invisible until fatal) side effects.  She answered my questions fully, reminded me about how long hormonals have been used, and then offered to order an OncotypeDX test to give me some data on which to base my final decision.  When she called with the results (Onco# 12),  she actually agreed that even if my risk doubles because of not taking a hormonal, my risk is still very low and my excellent health wouldn't be undermined by the long-term hormonal risks of stroke, liver damage, blood clots, etc.  It's too bad you ended up with a steamroller of a med onc--she is certainly adding to your stress with her attitude, so you might be best off if you walk away from her rather than fight with her.   

By the way, when I asked my primary physician to recommend a med onc who wouldn't try to steamroll me or bamboozle me with a doctor-knows-best attitude, he reminded me that any med onc wants bc patients to do Tam or AI, but that this woman is also experienced enough to know that hormonals aren't always right for everyone.  (Of course one can also wonder about all the perks that med oncs get from drug companies to keep prescribing things, to say nothing of the "billable hours" from quarterly visits and lab tests during treatment.)

When I told my surgeon about my final decision, he said that he would take over as my "watchdog," and my rad onc said she would also continue to see me if I wish, and I am totally happy with this arrangement.  I'm almost two years out from dx now, and have had nothing but good news so far and have no regrets about my decision.  I just keep exercising, get sufficient sunshine for vitamin D, and keep my weight and BMI in the normal range.  

Good luck to you, and know that you are not alone in your thinking.  It's just that many who think like us just keep quiet about our decision because of, for lack of a better word, peer pressure and also the pressure of the young Turks in the medical establishment.  

Best, Tgtg       

I had DCIS, low and intermediate grade, with a dollop of a microinvasion (less than 1 mm) smack dap in the middle with good margins, thank God.  I. also was really uncertain about rads when I thought it was just DCIS.  When I found my microinvasion, and saw I had clear but close margins, I went with rads.  Unfortunately; cut, burn, and poison is all we have right now.  So I did rads. Still; as my recurrence chance was low, and the absolute reduction would only be bout 4%. I passed on the hormone-blockers.  Exercise, but, REALLY ongoingly, has been shown (docs told me) to cut recurrence by about 35%.  Agianst the 45% reducton from the hormone-blockers, I chose exercise.  Get this.  If my recurrence chance had been 30%, and it could be cut to 15% with he AIs, I would have taken them, with all the side-effects.  But that wasn't my case.  When I was first diagnosed at the time, from biopsy, with just DCIS, my breast surgeon told me "We will cut out a quarter of your  breast (this from a a half-centimeter area), and you will have rads, and then hormone-blockers, and you'll be OK."  I know she was just trying to make me feel safe, but I found another BS in my HMO who took out much less tissue, did want rads, but both she and the MO said my recurrence chance was low, so the hormone blockers were up to me.  Bottom line.  If you feel you have the wrong doc for you; change,  And change again.  My third MO is the first one who is on my page.  So.  I had lumpectomy, rads (I could not get away from the numbers, though my margins were much narrower than yours) and no hormone treatment.  I think I'm going to be fine.  My first 6-mo. after-treatment screening was all clear, and I am doing exercise as though it is a prescription for me.  I choose that, with a low recuurence chance.  Investigate.  Ask questions here.  And then, make a decision.  Right here, we need to be big girls.

I admire your decision and strenght. Thank you for sharing. 

hi lmdi,

I had DCIS last september of 1,7x0,7 cm something like that, surgery and i chose to not take radio and tamoxifen, and now.. 4 months after i have a new DCIS right next to the previous scar, of 2,7x0,4 cm

I am gonna do it properly this time and do the whole 3 treatments.

No on can tell you what is gonna happen in the future but ur doctor was just being responsible, i hope my ex oncologist could forced me to do radio and tamoxifen (the reason i didnt i was because they said it look "good" the scenario)

Good luck hope you are all good now!

The serious side effects of Tamoxifen (blood clots, uterine cancer) are incredibly rare. The other ones, like hot flashes, hair thinning etc. are very variable as to who gets them and how severe they are. Don’t let reading these boards give you the wrong idea - the people who have no problems are unlikely to post even though they are in the majority. My MO calls them “quality of life” side effects and those go away once you stop the drug, so you can always do a trial run and see how it goes - if the side effects become too onerous, then you can stop it and they will go away. That was what I decided to do, but tomorrow will be 2 full years on it and I am doing fine. Yes, I have some mild side effects but nothing that is more than an annoyance, and not enough to make me want to give up. I’ve had some positive benefits as well (in addition to preventing a new primary or recurrence) as the Tamoxifen seems to have helped with some annoying peri-menopausal symptoms I was having.

Thanks alot for your reply, I will rethink about it from this prespective and hopefully i can make the right decision. Good luck for u all.

The whole TX process is confusing, and it's rare to have two people with the same protocols. I did Rads because mine was grade 3 and I wanted any edge I could have over this bastard. Mine was also nearly 100% ER and PR+. I was reluctant to try Tamoxifen because of the SE stories I'd been reading about. But my MO explained that in 20 years she had one woman develop another CA while on the med. That seemed like pretty good odds so I decided to give it a whirl. So far the only SE I seem to have is getting chilled. Regardless of our individual TX plans, we need to be confident in our providers and in the decisions we make. Regrets are a bitch.

roobashine- I was 43 at diagnosis so still premenopausal as well. I was very conflicted about Tamoxifen but I spoke with my MO and she advised me most of her patients tolerated very well. We made a deal to take it a month at a time. I am at almost 10 months, recently turned 45, and still not a single hot flash. I do have ultrasounds every three months for some uterine changes but hoping that will settle down. I have no symptoms with these, just the inconvenience of another appointment. I have been pleasantly surprised how easily this has been and for me there was just too much risk benefit not to at least try. Good luck!

Huntington, I am sorry you have had a not so good experience. There will be many ladies that will help you here. I am really new to this so I am not sure what is the norm. The doctor that did my biopsy sent the information to my regular physician and then she doctor set up my appointment with a breast surgeon. I then was told the breast surgeon would schedule me with further doctors that may be needed. I just had a lumpectomy and we are waiting on the results from the oncotype test so we don't know what is next yet. I would not be satisfied with the treatment you have had so far.

IMDI, I appreciate your letter as your attitude towards further treatments seem to parallel mine. I saw the surgeon for the post op exam today . I was diagnosed DCIS. She said margins were clean, and no need to test lymph nodes and she will send me to an oncologist and radiologist. This is so routine that women go along without looking at the pros and cons. No thought or discussion is given. I plan to meet with my GP since she was the one who took charge when my GYN dropped the ball. She has known me for years and we communicate very well.