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Topic: LCIS Prepping for your first oncologist appointment any advice?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: May 10, 2019 11:20PM

JMJ106 wrote:

Done with breast lumpectomy results confirmed LCIS. Will be meeting with medical oncologist early next on the preventative plan? Any one have advice for the meeting? Any specific questions one would recommend I ask? 48 year old female .Sister passed of breast cancer at age of 56 no other family history

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May 11, 2019 05:17AM Moderators wrote:

Hi there, JMJ106! We want to welcome you to our community, although we're so sorry for what brings you here. We hope you find this to be a supportive place!

The first meeting will be very informative and likely overwhelming. Bring a notepad so you can take notes and write down any questions that pop into your head to ask during that appointment or at a follow-up. If you have your pathology report, review it before meeting with the doctor so you can ask them to clarify anything you don't understand. There are options available to you for preventative observation or treatment, so make sure you discuss all the available options so you can make a more informed decision. Be prepared to discuss your family history, as that can influence which course of action is most beneficial.

We hope your appointment goes well! This community can be a great resource for information and advice once you have all the information you need from your appointment. Keep us posted!

The Mods

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May 13, 2019 05:18PM light1candle wrote:

Hi JMJ106. I also have LCIS, diagnosed about 2 yrs ago, but have not yet seen an oncologist. I waited to reply as I was hoping someone with more relevant experience would post a response.

In my case, my breast surgeon gave me my biopsy results and talked to me about the need for regular screenings and offered the idea of preventative anti-hormonal drugs. She actually wanted my primary care doctor to prescribe the meds and follow up with me. (My primary care doc was not comfortable with this idea.) I am older than you are and have a number of pre-existing conditions that might make some or most of the drugs not a good match for me, so I had lots of questions about the drugs. I called another local hospital (NCI- Cancer Center) for a second opinion consult with their “high risk” doc. She also turned out to be a breast surgeon and not a medical oncologist, but she really did look over my list of co-morbidities and did try to help me decide about the anti-hormonal drugs. She took her time with me andseemed very knowledgeable and in the end decided “First do no harm” and could not recommend the drugs to me because of my pre-existing conditions.

Hopefully, your MO will carefully consider your own health history and talk to you about the SERMs and AIs. I would suggest taking a list of any other pre-existing conditions you might have as well as a list of prescriptions you take. Make sure you know what side effects you might need to watch out for with each drug. I would also ask about whether genetic testing would be appropriate for you since your sister developed breast cancer at a relatively young age.

Are you scheduled for regular MRI’s as well as mammograms and/or ultrasounds? It’s good to get on a regular schedule with these tests, staggering them every 6 months or so. At least that is what I try to do. I also like to switch between the different imaging types because different tests can pick up things missed on another test.

Also, try to clarify with the MO who will be coordinating your care and doing clinical exams for you? For me it’s my bs, but I think for some LCIS women it’s their MO or primary care doc.

Good luck with your appointment. I hope you get a caring doc who is easy to communicate with. Let us know how it goes?

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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May 14, 2019 12:44AM - edited May 14, 2019 12:51AM by Lea7777

Hi JMJ106 and good luck with your upcoming appt. You are doing the right thing by being prepared. This diagnosis has to be all the more difficult for you because your family has suffered a loss from breast cancer. I am sorry about your sister.

There is some good advice from LIght1Candle on what to ask.

Here are some additional suggestions.

Ask how many patients with LCIS the oncologist has seen. Also ask if the oncologist has seen other patients with your diagnosis and with your family history (or a very similar one.)

Ask if s/he knows of any knows of any recent developments for women at high risk in the areas of screening/surveillance, lifestyle, research, assessment tools, etc. Or if there is something down the line that can be anticipated.

One recent trend that I have read about is "de-escalation" meaning less surgery and less medication. Ask what the oncologist's view of de-escalation is.

Ask if the oncologist is aware of any clinical trials going on that you might participate in, assuming you are interested.

Ask if the institution where the oncologist works offers genetic counseling and see about doing that (for the BRCA genes and others).

Ask what sorts of interventions have been used for women who have had side effects from taking the various drugs or, specifically, the drug that is suggested for you.

Ask what s/he thinks about the safety of the dye used in the MRI that you'd be getting--this assumes MRIs would be recommended and that they'd be done at a facility the oncologist is familiar with.

If Tamoxifen is suggested or prescribed, ask if the new low dose of 5 mg/day is appropriate for you?

Ask if there are any foods or supplements you should incorporate into your diet or things you should avoid. You may want to specifically ask about Turmeric-Curcumin or Vitamin D. Maybe ask about Brassica Tea with truebroc. Flax seed and walnuts. Perhaps ask about safe levels of alcohol consumption. You could followup and ask if the oncologist sees any value in you visiting with a dietician.

If a statistical assessment tool is used with the oncologist to help determine your 10 year and lifetime cancer risk, ask how valid the results are. (The experience many of us have had is that the results are way overstated, but that high number helps you get additional screenings through insurance.)

Ask, "What would you suggest that your 48 year old sister (or wife depending on the circumstances) to do if she had my diagnosis?" (or use mother instead of sister if the oncologist looks very young)

Do let us know how your appointment went if you wish.

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May 14, 2019 01:04AM Lea7777 wrote:

There was a similar question very recently about what to ask the nurse practicioner at a high risk breast clinic. Some of those questions could be pertinent to the oncologist as well. Here is my response to that question.

What questions should I be prepared with when I meet with the nurse?

Some Questions and )))))Answers(((( from my one visit to the high risk breast clinic Nurse Practitioner. You might find some of these helpful. Don't take the answers I got about a year ago necessarily as gospel, but I wanted to share the answers I got and not just the questions I asked.

1.The 29-year Longitudinal Study on LCIS showed 2% chance per year, with a questionable plateau after 15 years. If I multiply 2% x 30 years, which is reasonable to think I'll live that long based on family history, do I have a 60% chance of breast cancer?

))))))Answer:Medication can reduce your risk by about half and 60% is higher than the #s the NP had of up to 35% lifetime ((((((((((((((((((((

2. Are the Tryer-Cuzick IBIS risk model results that were calculated for me with the genetic counselor reliable?

))))))))))))))) The answer from every source I spoke with, including the NP was no, they are way overstated ((((((((((((((((((

3.The stats I saw on short-term screenings showed little difference from annual screenings.

2.5 cancers per 1000 screenings for 3-8 months

2.3 cancers per 1000 screenings for 9-18 months.

The really disappointing # was 25% of cancers were late stage for 3-8 months screenings. 27% of cancers were late stage for 9-18 months screenings.

I would have expected the late stage percent to be very low if screening is done every 3-8 months because they'd be caught at an early stage. The 25% late stage is huge IMO.

From what I have found, whether MRIs or mammograms are used, these stats are not substantially different.

Do these #s seem about right?

))))))))))))))))))))))) The answer was that the interval cancers—the ones found between screenings—tend to be the deadlier ones because they develop more rapidly. The cancers most likely from LCIS, ALH, ADH tend NOT to be the fast developing deadlier ones.((((((((((((((((((

4. I see no data that AIs or SERMs (the endocrine drugs) reduce invasive breast cancer risk 25 or 30 years after the drugs are stopped. In fact now AIs are being recommended for 10, even 15 years, instead of 5 because their effects don't last.

))))))))))))))))))))))) 30 years is a long time out to determine effectiveness but the drugs do give protection after they are completed except for Evista/Raloxifene. However you can take Evista/Raloxifene for life, unlike the other drugs. ((((((((((((((((((

5. I cannot find longterm breast cancer survival rates.I called American Cancer Society and they don't have them either. Here is what I got:

Breast Cancer Facts & Figures 2013-2014 -From American Cancer Society

Survival of breast cancer patients to survival among people of the same age and race who have not been diagnosed with cancer.

89% after 5 years (Stages 1-2 are more like 100%)

83% after 10 years

78% after 15 years

Do you have any 25-30 year rates?

))))))))))))))Answer:Because the treatments and drugs improve a lot, 25 to 30 year survival rates are not meaningful because they are based on outdated treatment methods that are not as good as what we have today ((((((((((((((((((((((

6 If I wished to get MRIs every year, is insurance likely to cover that?

))))))))))))))))))) MRIs may soon come down to around $500, if you must pay out of pocket. They are $2000 - $5000 now. The gadolinium dye issues may mean annual MRIs over an extended time frame are not safe. She had not seen insurance problems in getting annual MRIs if the request for it is written properly. Sometimes it requires peer review (I think that was the term) with the insurance company.((((((((((((((((((((((

---I can't turn off the bold.--

7.Any big breakthroughs just around the corner?

)))))))))))))))))))) Answer: Liquid biopsies, less intrusive and painful than current methods (((((((((((((((((((((

8.I know PBMX has increased from 12% in 2000 to 18% in 2009 for women with LCIS. Do you have more recent figures? American Cancer Society does not have more recent figures than 2009. Why do you think there is such an increase?

)))))))))))Answer:These are mainly young women facing many years of risk who are choosing the surgery, not women your age (58) where surgery is not recommended. (((((((((((((((((((

Advice she gave, not in response to any question was (close to her exact words) "I always tell women with LCIS to do the enhanced screening for one year to see how they handle it and to see how they are feeling a year after their diagnosis.They can also try the drugs if they wish during this time. But don't do any surgery in the first year. There is no rush."

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May 15, 2019 05:10PM JMJ106 wrote:

Update, I went to the Oncologist and I like her from a preventative plan. I will be taking tamoxifen for 3 years, trying out of the gate 20mg. Their a few different dosage. This was a personal choice. Since their aren't many questions out there on to help people prep. I will share mine so someone's has a list, answers in italics.

Post Surgery Related:

  • Anything you see in the pathology report that is concerning? A: No
  • What is PASH - Pseudoangiomatous stromal hyperplasia ? The name is so long it's scarey! A: Nothing to be concerned about
  • The site still feel very hard ? and tingles a bit? is this normal? A: YES

Prevention Plan related:

  • What lifestyle changes would you recommend? I am about 25 pound over weight (just lost 40) .. do I need to get to Health weight zone? A: yes it would be good
  • What medicine do you recommend for pre-menaposal women? what are the side effects? Will tamoxifen induce menapause? A: Tamofixen, Side effects can be found online biggest is concerned about getting pregnant one it or blood clotting it doesn't induce menapause
  • Should I consider Genetic testing? A: yes
  • I am on High Blood Pressure and Cholesterol Medications should I change what I am taking b/c of the increased breast cancer medication? A: No the ones that were found to have a link have been removed from the market
  • Evening primrose oil for fiber cystic breast - do you recommend taking it? A: No, since it is not regulated.
  • I have been on Metaformin since January 2017, I asked about the clinical trial around reducing LCIS and if she had any data points? A: will follow up on this one next visit.
I do hope this helps you!

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May 15, 2019 09:56PM - edited May 15, 2019 09:57PM by Lea7777


Thanks for sharing your Q&As.

"I have been on Metaformin since January 2017, I asked about the clinical trial around reducing LCIS and if she had any data points? A: will follow up on this one next visit."

And I hope you follow up with us.

I noted the doctor overseeing this study and it is the one I see at Mayo, so I'll be asking her about it before the year ends and I too will report back.

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