Thinking Outside the Box.

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Eddie_T
Eddie_T Member Posts: 10
edited December 2018 in IDC (Invasive Ductal Carcinoma)

I am concerned over the current slow process of making new treatments available. Many things bother me such as the continuing removal of indicator lymph nodes when palpitation reveals no invasion plus there appears to be no certainty that the lymphatic system is the prime mechanism for spread of cancer. If a drug such as Tamoxifen can be shown to reduce tumor size for a patient that is not a candidate for surgery why not try topical Tamoxifen to see if it would contain it without the side effects? If cryoablation has been shown to work for tumors of 1 cm or less why not try it on IDC tumors that are larger than 1 cm realizing that multiple treatments might be necessary? Even though the patient is willing and a procedure variation might save her life I think doctors are afraid to think outside the box. Doctors that do think outside the box are either afraid of being branded as quacks or don't want to perform all the paperwork required for off label treatment. I was willing to fight the establishment and even travel to Mexico if necessary to get treatment for my wife but unfortunately I lost her to septic and cardiogenic shock unrelated to her breast cancer (unless it was an undiagnosed side effect of oral Tamoxifen). I think all the stops should be pulled out (especially for willing elderly women) to give them a chance for life without radical procedures.

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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2018

    Welcome, Eddie_T. I am very sorry for your having lost your Wife.

    Why would (presumably absorbed) topically applied Tamoxifen not have the same side effects as orally administered Tamoxifen?

    >>when palpitation reveals no invasion<<

    Palpation may raise suspicions of lymph node invasion, but it cannot determine that there has been no invasion.

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  • vampeyes
    vampeyes Member Posts: 1,227
    edited October 2018

    So very sorry for your loss Eddie.

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  • Eddie_T
    Eddie_T Member Posts: 10
    edited October 2018

    ***Why would (presumably absorbed) topically applied Tamoxifen not have the same side effects as orally administered Tamoxifen?***

    That was the purpose for its development. In clinical trials it was found not to cause the same side effects as the absorption is primarily localized to the tumor area of the breast. I was going to make my own topical with DMSO but found that it has to be a metabole (as if passed through the liver) of Tamoxifen to be effective.


    ***Palpation may raise suspicions of lymph node invasion, but it cannot determine that there has been no invasion.***

    True but what's wrong with leaving the lymphatic system intact until palpitation indicates a problem, especially if the patient is willing and elderly? Are we only in charge of our bodies with respect to abortion and not real medical procedures? Remember the lymphatic system has not been proven to be causative in the spread of cancer, it may be only he blood stream. I didn't originate the thought I read about the controversy somewhere in my studies.


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  • hapa
    hapa Member Posts: 920
    edited October 2018

    A patient can refuse sentinel node biopsy. A patient can refuse anything they want. Some elderly patients are choosing observation only. Actually, patients of all ages choose not to treat their breast cancer. I personally wasn't willing to take that gamble, as I thought in my case it was certain death, but if people want to do that more power to them. Doctors are going to recommend whatever they think has the best chance of curing your cancer, but even they acknowledge that there are patients for whom intervention does nothing, either because their cancer kills them anyway or because their cancer never would have killed them. They just don't know which patients are which.

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  • Eddie_T
    Eddie_T Member Posts: 10
    edited October 2018

    Hapa, good to know! We were told what they were going to do and I was preparing for a fight but the hospital has a tumor conference every Friday morning and made the determination the week before surgery that she wasn't strong enough for surgery. I am glad for that as we were being pushed toward mastectomy, whereas the Tamoxifen approach was giving us time to make a more studied and informed decision.

    IMO women are too trustful of the medical profession and need an antagonistic advocate on their team. On her stasis wound care I became so studied the the nurses asked my approval before they applied the secondary dressings. I found that her wounds were increasing in size due to high exudation and primary dressing overlap of periwound skin. At home I got good results using incontinence pads as secondary dressing since they trap exudate and don't give it back. However those pads are not approved for Wound Care Center use.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited October 2018

    I'm so sorry about your wife.

    The medical system can be frustrating. And it is often lacking, especially when it comes to treating women patients. It would be wonderful if everyone could have an ally beside them the way you stood for your wife. It is also wonderful that you are still thinking about how to make life and treatment better for others with breast cancer.

    I don't know enough to know about your specific concerns, but I'm pretty sure that you could find a cancer research or patient advocacy organization that takes an approach that feels right to you. Volunteering for or supporting an organization like that could be a great way for you to make a difference.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2018

    As someone who had cancer cells found in the sentinel lymph node (2.1 mm), I'm glad no one waited until it was palpable. My surgeon couldn't feel anything wrong with the nodes, and neither ultrasound or MRI picked it up. As much as the sentinel node biopsy hurt (a whole lot), and caused some side effects I wish I didn't have, I'm extremely glad that the cancer was removed and didn't have a chance to branch out any further. Also knowing that cancer was found there allowed me to know that radiation to the area was a good choice, and to know that I need to take my tamoxifen without fail lest any other cancer cells escaped unaware. I wish my lymph node removal wasn't necessary, but I fully believe it was and am quite thankful for it.

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  • Eddie_T
    Eddie_T Member Posts: 10
    edited October 2018

    +gb2115, I am so happy for your good results. I think each case and person is different. It sounds like you made an informed and proper decision and had wonderful results.

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  • WC3
    WC3 Member Posts: 1,540
    edited October 2018

    I share your frustration. There are currently two therapies I want and can't get locally, and I have found that my treatment tends to be insurance driven more than I think it should be in that sometimes I have found that my doctors have made decisions based on what they think insurance will and won't cover rather than telling me "I recommend X but you might have to pay out of pocket".


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  • Eddie_T
    Eddie_T Member Posts: 10
    edited November 2018

    Tamoxifen Gel was in the news a couple of days ago. Seems that it may be good for reducing breast density as well as replacing oral Tamoxifen for DCIS recurrence. I think if I hadn't lost my lady to other causes I may have been close to making a good fight for trying it on IDC tumor containment and reduction as oral Tamoxifen seemed to be working for that purpose. Here are a couple of links, maybe they can help for someone.

    Tamoxifen Gel good as pill

    Tamoxifen Gel may reduce breast density


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  • Nicnnat3
    Nicnnat3 Member Posts: 14
    edited December 2018

    hello I’m just wondering do you need chemo since It went to your lymph nodes? I have stage 2 I just got a lumpectomy and they took out two of the sentinel lymph node which tested positive but very tiny and the upper node removed in the auxiliary area was negative thank God. I do know I need chemo and radiation waiting on treatment plan. Waiting for pet scan praying it didn’t go furthe

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  • Eddie_T
    Eddie_T Member Posts: 10
    edited December 2018

    A friend of mine is on 2 chemo meds that have to be taken together, she has had 1 of them filled for over a month but insurance has yet to OK the second one. Her cancer is now in her bones, I'm in tears thinking of what she's going through but she is tough.

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