TNBC radiation vs. chemo

Ajpicard
Ajpicard Member Posts: 9 Member
edited January 3 in Breast Cancer #1

Hello Everyone,

I was diagnosed with TNBC a few months ago. It was caught early -- stage 1(b). I was told the best treatment would be 4 chemo sessions 3 weeks apart, then a break of a month, then four weeks (5X/week) of radiation.

I've had two chemo treatments so far, and I'm having the WORST TIME. Oncology team told me about side effects, and assured me they would last for a few days. NOPE. They last for at least a week, and by the time I'm feeling better WHAM! I need another treatment. No nausea/vomiting, but everything else -- complete lack of appetite, headaches, insomnia, diarrhea, depression, etc. It's very difficult to function -- and then of course I freak out about all the things I haven't accomplished.

I've done some research and discovered that chemo is generally advised under the following circumstances: lump is large and needs to be reduced before surgery; cancer has spread to lymph nodes; cancer has spread to organs; or patient has BRAC1 gene. No of this applies to me. Most women in my position just have 6-7 weeks of radiation. So I'm thinking of skipping my last 2 chemo sessions and having radiation for 6-7 weeks. Has anyone else been in this situation?

Many thanks!

Comments

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    All I know is that doctors make money selling the chemo meds to patients 🤬 that was enough for me to say NO! There needs to be something done about doctor's profiting off chemo, it's not right! They should not make a single penny that way there is no incentive for them to push it.

    Was surgery not an option for you?

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    I think this is a wrong and dangerous assumption. Doctors do not "profit" from chemo drugs. They follow guidelines established by the NIC and NIH, based on the specific type of cancer, if it's invasive or graded as a quick spreader. These guidelines are based on risk/outcome percentages and the chance for the cancer to return or metastasize. TNC is a very difficult cancer to treat and kills a lot of younger women so they tend to treat it aggressively.


    FWIW, I have suffered from numerous severe side effects that last for 8-10 days starting 3-4 days after chemo. My treatments are every 3 weeks. My Oncologist may do a dose reduction for 4th round. It's amazing the people who come here think they know more than Oncologist and researchers. If you're having problems with the chemo drugs discuss it with your doctor and see if there are alternatives to the plan, and/or other meds to control the side effects.

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    Discuss all of the side effects with your Oncologist and see if there are better meds to control the side effects. Ask your doctor WHY was chemo recommended rather than radiation and possibly surgery. TNC is a difficult cancer to treat. It can be aggressive and spread easily. Did they not discuss the characteristics of ýour cancer based on biopsy results? Risk of returning or metastasizing?

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    I am not saying I know more than a doctor. Not sure how you got that from my comment. Just stating that it is wrong that they can profit from from selling chemo drugs. Money should not be involved at all.


  • Ajpicard
    Ajpicard Member Posts: 9 Member

    I had surgery -- small lump (pea-sized) was removed. The article (if it's real) is SEVENTEEN years old. We'd hear about it constantly if docs actually made money from chemo -- and nobody would agree to the treatment.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    I hope it's not true but medicine in this country is big money no matter what ailment you have. It's much more profitable to treat a disease than it is to cure it. I know sometimes people don't have a choice in doing chemo or not. My 1st oncologist started pushing chemo on me the 1st minute I met him and he was not empathetic at all so I didn't trust him. I found another oncologist and told him right away I was against chemo and he said OK I'll treat you a different way. He told me about the Oncotype test to see how beneficial chemo would be to my specific cancer. My 1st Dr. hadn't even mentioned this test to me. My results came back and guess what, chemo was not beneficial to me. I just want people to stand up for themselves and make sure you trust your team of doctors, get second opinions. I'm sure everyone heard about that doctor that fake diagnosed hundreds of people with cancer and made millions off the chemo meds. There are monsters in this world. All of this being said I know TNBC is very aggressive and treatment needs to be as well. I pray for health for all of women I talk to on here. We are all living a nightmare.

  • Ajpicard
    Ajpicard Member Posts: 9 Member

    Hi Jasmine,

    You make some excellent points. At this point I wish I hadn't tried chemo, but I was told it was the most effective treatment for TNBC. I was also given a tremendous amount of info about side effects and how to deal with them. Nurses kept insisting that side effects would last only a few days. NOPE! First time the side effects lasted a week; after my second chemo side effects are ongoing over 2 weeks later. I'm barely functional. At this point I REALLY want to quit the chemo and start radiation. After my surgery, I was told the chances of recurrence were approx. 15% -- 4 chemo sessions and 4 weeks of radiation would bring that number down to approx. 7.5%. So this is the question: if I stop chemo now, will that negate the benefits of the first two chemo sessions? I've sent my chemo doc an e mail explaining all this -- waiting for her response.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    Don't regret anything you have done. You were forced to make decisions quickly and under insane amounts of pressure. I actually asked my doctor after everything if he though I had made a mistake not doing chemo and he told me to never doubt myself because there is no way to know the answer to that question. I think you should do what feels right to you. Talk to your doctors and get all the information and then make that decision. On the bright side, if you do decide to continue with chemo... you are already half way done! 2 down, 2 to go.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    Also.... I hope you feel better soon 🙏

  • ladyrox1
    ladyrox1 Member Posts: 7 Member

    Hi everyone.

    I hope all are feeling well on this Day.

    I had a bilateral mastectomy, clear margins, stage 2A, hormone positive, the oncotype results tells a lot about whether to suggest chemo to a patient or not. A consult with a well known radiologist would tell if to have radiation or not. genetic test negative, her2 negative, as well,

    mine all pointed after various tests and opinions after surgery to an oncologist consult, for 5 year hormone blockers. No radiation/no chemo! partly, Due to my quick surgery decision, I believe.


    yes, I do believe to trust the process and in specialist hands, but asking, researching, ask the right people in field with experience, seeing a doctor that specializes in what we are going to discuss and is up to par on research trainings is key too.

    Results of my Bone density, blood work will be there with me at the upcoming oncology consult as I have osteopenia in one hip, and arthritis few places. I’ve been hearing side effects of meds, and wondered if it’s that much if one consistently does daily cardio, walks, and three times a week weight for bone strength, & eats healthy. To help counteract these side effects being mentioned with teeth bone health and whole body joint muscle & bone health?

    also need to find the one that doesn’t make the cholesterol increase more, any ideas?

    also, is there anyone that has a positive story to share about a specific post menopausal hormone blocker if your lifestyle has been active like mine?

    the one that starts with Letter L? I’ve heard….

    Any tips, as I go in Jan. to discuss the meds which is my next step in this journey.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member

    Hi, you sound as though you've got a generally positive baseline from which to heal from this and have good health - I'm so grateful for that for you. I have your prognosis, except that I need radiation due to one lymph node affected. I too am on Lupron (because I still have my period - this will suppress it and has TERRIBLE side effects, so I am postponing one month's injection so it doesn't add to my radiation side effects - my first day begins in 90 minutes and I will go through it until the 1st week in February.

    I will be on Anastrozole along with Lupron, I suspect when my period is officially suppressed beginning its first month, for 10 years. I am also very concerned about al I've heard. I too have osteopenia - in both hips - though my lumbar bones are of normal density. I do see a lot of research that indicates Anastrozole causes bone density loss and muscular-skeletal joint issues. But I have not yet had experience with it to say.

    I also want to encourage you to ask your doctors and perhaps any integrated health professionals associated with your care team about these concerns. I am not at all blaming anyone here, as we / they all have their hands full with treatments, outlooks, etc., but since I am relatively new here too, my experience has been that there are't enough responses (and they are periodic when they occur) here to be a reliable soundboard, if not discussion.

    I am saddened by this, as I am basically going through my cancer journey alone and without family or friends close by, and am not a "support group" type person. So I thought this forum might be an option to share and be of support to others and be less in a vacuum .

    Good luck with your upcoming appointments.

  • dreaming
    dreaming Member Posts: 26 Member

    I had a negative mamogram, ultrasound, only pain in one breast, no family history, after 4 months going from surgeon, I demanded an excitional biopsy, breast cancer was found, removed.The oncologist told me no need for further treatment. I was a young mom and wife,there was no internet, fast I educated myself ,went back to my surgeon and told her I want the most aggressive treatment of chemo , a masectomy. My husband though was too much, but is my body,my decision.

    During the masectomy was found lubular invasive that was diferent of the one in the biopsy Stage 1.

    My chemo was drip and dense at my home, first week ,second the booster, third week sick ,fourth ok, blood work ,repeat.

    One year lasted my treatment, during this time I went to volunteer at a Cancer center, joined a support group.

    Later the Center offered to pay to go back to University, justed retired from it. Went to work in the medical field.

    My kids finished High school, college, got married.

    I owe my 30 year survival to chemo, Radical mastectomy, my support group. But it is a choice ,a very personal, I can't say do this or not.

    It depends of many factors.

    Still I believe in cancer treatment should be aggressive.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    Wow!! I can't believe the mammogram and ultrasound missed both of the cancers. Good for you for standing up for yourself and getting the treatment you needed.

  • dreaming
    dreaming Member Posts: 26 Member

    Luckily now we have the best mamograms, years back was advised that after 5 years if one needs a diagnostic mamogram the doctor has to specify.

    Make sure you get a diagnostic one not a routine one.

    The only time I did not ask for one ,had the routine mamogram, a lump was found in my one breast, had to go back inmediantly to get a biopsy or be removed.

    It was benign, learned my lesson.

    Through the years I had microcalcifications removed from my chest wall ,behind my reconstruction.

    Allways get a second opinion, ask questions, be positive.

    Pamper yourself and let others help.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    Did you have a double mastectomy or just one? I had a double and was told I wouldn't need to worry about mammograms.

  • dreaming
    dreaming Member Posts: 26 Member

    I had a radical masectomy with 18 lymph removed, R breast, no need for double, positive hormonal, no inherited genes, no family history of any cancer.

    My doctors want me to have yearly mamograms, except when found microcalcifications, I had 1 every 6 months.

    Also I have an ultrasound each time.

    I have a great medical team.

  • Jasmine8
    Jasmine8 Member Posts: 18 Member

    Got it. I opted to have both removed to avoid mammograms as well as for aesthetic reasons and honestly just pure fear that it would come back in the other breast (I know that is very very rare).

  • dreaming
    dreaming Member Posts: 26 Member

    Is a personal choice, I was planning reconstruction, was in my mid 30, waited a year . My best friend chose no reconstruction. Chest wall also has breast tissue.

    My pre cancer calcifications were in my chest wall on the breast I had a radical masectomy.

    Also never do I regret once I make a choice, and for me it was the best.