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No hormone therapy vs hormone therapy

Dh305
Dh305 Member Posts: 9

hello. My wife is about one year out from a double mastectomy. The pathology showed that her right breast had LCIS and DCIS. The left breast was benign, but she had it removed as a precaution. The right had multifocal invasion, with the largest tumor being small about 3 mm. She did not need radiation or chemo therapy, as it did not spread to any lymph nodes and because the tumors were very small and All of the margins were negative.

She was staged as T1A with a grade 2 tumor

Therefore, the oncologist said the only remaining therapy would be hormone therapy. She told us my wife’s benefit would be less than 1%, and due to the adverse effects of tamoxifen, we decided to forgo hormone therapy.

Fast forward one year, and I have been very nervous about this decision, so we had a second opinion, with an oncologist in the same hospital, the oncologist said that my wife’s risk of reoccurrence was between 5-10%, mostly because it was multifocal.

She said tamoxifen would cut the risk of that down by about 40%.

She gave us the same option. Basically that it was my wife’s decision to take tamoxifen or not

Unlike the first oncologist, this one seemed to be leaning towards taking it.

However, it has been one year out from the surgery, and she could not give a clear answer if there would be any benefit since a year has passed.

My wife is against taking it. Of course, this decision is hers, and hers alone, to make. I am just wondering if there are others on this forum that had a similar diagnosis with a good prognosis and what they decided to do in the situation

Thank you for any insights . Just a concerned husband

Comments

  • quietgirl
    quietgirl Member Posts: 165

    So the first MO says the benefit would be less than 1% if that means there is a reduction of 1 percentage point meaning roughly if her risk was 5 to 10 percent it's now maybe 4 to 9 it's not all that different than

    The second one is saying that her risks would be reduce by 40% so that means roughly 3 to 6%

    My point is that from a math framework the end numbers aren't all that different even if they worded things completely different and a reduction of 40% sounds a lot bigger than a 1% benefit but it could be almost the same number overall


    I doubt I'm helping. It would be so much easier if taking a pill dropped your chances from 50 percent to 1 but it's not like that. There are people who take meds who end up having a reoccurrence and those who don't take them who never have another cancer. Decisions like this are so personal but I just don't know that the MO's are really telling you different things but rather using different numbers to talk about the same overall stats because their focus is different (it seems to me anyway that some focus on reducing chances no matter what especially if someone is reluctant, while others combine that with quality of life while on meds depending on what the chances are to start with AND how effective meds might be for someone)

  • Dh305
    Dh305 Member Posts: 9

    Thank you for your reply. Basically, the first MO says her chance of recurrence because of the size of the tumor, etc. would be "less than 1%. benefit" taking the hormone therapy. However, the second MO said her chance of recurrence was probably less than 5%, but conservatively would be 5%-10%, and with the 40% reduction due to Hormone therapy, it would basically be reduced to 2%-5% with hormone therapy.

    But, yes, overall both had the same opinion that her prognosis was very good overall and the chance of recurrence was small. I'd imagine that if it was a must to take it, both would have been adamant about it.

    It just seemed the first MO was basically like "it's your choice", but she seemed to indicate not to take it, whereas the second MO was "it's your choice, but if there is a benefit, give it a try".

    The issue is because the first MO didn't seem that enthused about it, my wife declined and now it's been a year since her mastectomy and I don't know if it would even be effective at this point in time.

  • maggie15
    maggie15 Member Posts: 846

    Hormone therapy can be effective whenever it is started. It's often the first line of treatment when an ER+ person has a stage IV recurrence. The statistics describe their benefit based on a large group of people but cannot predict what is going to happen to an individual. Some people tolerate them well while others have all kinds of side effects; trying them seems to be the only way of finding out how an individual reacts even though there are early stage cellular studies that have identified genetic markers for people prone to some SEs. The decision depends on the statistical relative benefit, other health problems that might be exacerbated, and risk tolerance as decided by the person for whom they are recommended.

  • Dh305
    Dh305 Member Posts: 9

    Thank you. That is good to know this option is still available after 1 year out with possible benefits.

  • lillyishere
    lillyishere Member Posts: 770

    I'm sorry your wife has to go through all this. She was very conservative in removing both breasts. Also, LCIS has considered Stage 0. Doctors go by the book, and nowadays, the guideline says she can take anti-hormonal treatment. If I was in her position, I wouldn't. These meds have side effects even if you don't have them right away. No one can tell us what SE will be in 20-30 years. Also, depends on your wife's situation, how old is she, do you have young children, and how is her general health. I take my medication because I am Stage II, with young children. Her situation may be different.

  • K-Gobby
    K-Gobby Member Posts: 144

    I was stage 2 no metastasized and had a 5cm plus tumor. I am on Letrozole and have been for 1 year plus. For me, I genetically found out I carry the Brca2 tumor. That is why I will do what my doctors suggest.

    I did not have another choice, but your wife did a positive step with the mastectomy. I had a double to. I might have done what she choose. Have a test yearly such as an MRI and just live life.

  • Dh305
    Dh305 Member Posts: 9

    Thank you. She had both removed because of family history (although, surprisingly, the genetic sreening didn't show any mutation). The surgeon didn't really push for the removal of the other, but the MO said it was a great call on her part because the LCIS is a red flag.

    My wife is 45, and we have 2 girls, the youngest being 11.

    Her overall heath is very good. She is not pre-menopausal yet.

    The only reason the second MO had pause for her not to take the HT was because the DCIS was "multifocal". Other than that, all other indications looked very good, luckily.

    Of course, if the doctors strongly recommended it, she would be taking it. That isn't the case though.

    It's just that she is in "gray" area where it's "her decision", the benefits seems small, and she is generally anti taking anything than a multivitamin.

    It's her call, and she says "no", but I am just trying to gather information on it.

    I appreciate your thoughts on it, and wish you a full recovery.

  • With what the oncologists have said, her benefit from these drugs is on the low end of the spectrum, and they do have risks (including a slightly increased risk of ovarian cancer in women her age.) These drugs are a complicated risk tradeoff for women like your wife, and unfortunately, there is no crystal ball that will tell you what the outcome of either decision would be.

    Ultimately though, it is her decision, and you need to make peace with what she decides.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    dh305,

    The genetic testing, despite a family history, is actually no surprise. Only about 15-20% of those tested are positive for known genes that increase one’s risk for breast cancer. I not only have a strong familial history of breast/reproductive cancers but I belong to an ethno/religious minority with higher than average incidences of BRCA 1. My testing? All negative. The reality is that the vast majority of bc cases are not linked to known genetic mutations.

    As for the decision on anti-hormonals, each person needs to evaluate not only statistical risks but their own risk tolerance. While some will say that recurrence is a crap shoot, I don’t feel that way. The stats are there but what they can’t do is predict how an individual will do . The stats are aggregate figures based on history. Since they have no individual predictive value, every person who considers taking these drugs needs to know that there is no way to determine where they will land and make their decision fully aware of the fact that there are no guarantees. It kind of stinks but that’s the current reality. Take care

    PS: I have been on AI’s for over 11 years but I am stage IV. I am also not typical.