Posted on 07/12/2016 12:01:37 PM PDT by the OlLine Rebel
OK, finally I will give an update on my breast cancer.
Any advice/guidance appreciated regarding my specific history! Anyone who matches me would love to hear from. I'm 47 now, BTW.
*I have a history of a pulm. embolism a month after major surgery on the gut the other year, while still on birth control (they yanked me off after that).
Very small tumor, no lymph nodal invasion. Stage 1A basically. Also "best" situation hormonally, ER/PR+ and Her2-.
Soon after, genetics called saying I have some genetic issue, with MUTYH and NBN mutations. Very little is known about them so it hasn't much affected approaches to my treatment.
Now for the treatment plan - I can go for radiation for 4 weeks. Check, no conflict.
Conflict comes from my own oncologist and 2nd opinion (my mother's onc), whom I saw yesterday.
*I have a history of a pulm. embolism a month after major surgery on the gut, while still on birth control (they yanked me off after that).
My oncologist - Tamoxifen with baby aspirin
2nd onc - no Tamoxifen!!!! get ovaries removed (or Lupron shots) and then other aramotase inhibitors are allowed in place of Tamoxifen.
So now I'm back where I started, not knowing what to do! I hear bad things about all these meds and approaches (inducing menopause, etc). Don't know what to think! Have to keep talking to doctors, yuck.
Wife has had breast cancer twice in her 40s. She’s 49 now.
Taking those pills to induce menapouse.
Had radiation.
She gets home around 8ish and if she can help in any way, let me know.
She goes to Mount Sinai, which is one of the best in the country, so she could always pass a question along for you, I would imagine.
Continued prayers for you.
Prayers.
Here is a great resource in California. http://thesecondopinion.org/
The mission of thesecondopinion is to provide free, comprehensive second opinions to adults in California diagnosed with cancer. At the heart of our program are the volunteer efforts of over sixty board-certified physicians from multiple cancer related specialties. Their diverse experiences in cancer diagnosis and treatment allow us to provide a patient centered and compassionate service not duplicated by any other agency in California.
I used them and received a telephone consult very quickly. The doctor concurred with the course of treatment that was recommended. I didn’t question what the docs had recommended but it did provide an extra layer of comfort that the Second Opinion doctors agreed. Private message me if you would like more details.
Same story here. Wife going through her second battle. It seems like a lot of women are getting cancer twice.
Her2 Protein - Stage 4 with plural effusion.
Wife has had breast cancer twice in her 40s. She’s 49 now.
ping, please! Update on my cancer.
My wife and I will pray for your wife.
Many, too many women getting it. I dont know why.
Thanks DP. Prayers really help and make a difference.
My wife is in her 40s as well. Too young to go through this this early in life. We were just getting on our feet from the first battle.
If your tumor is contained, they can use the proton machine for sure. Many of the people there were told they had 6 mo. to live back home only to walk out in complete remission 30-40 weeks later. Many doctors tell you do this or that because it's what they do or what they know about. I talked to several docs that had never heard of proton therapy when I had mine. The research is really up to you. Houston was only about a 3 hr drive for me, but I will only go to them if it comes back.
Prayers will be said for you.
I take Evista which is made from Tamoxifen. It helps keep you from getting osteoporosis and it gives about a 70% protection agains’t breast cancer without the bad side effects of Tamoxifen. The only problem is one possible side effect is blood clots. That’s likely why your oncologist is wanting you to take baby aspirin with the Tamoxifen. You could ask about the Evista.
You might also want to look up the stats regarding lumpectomies with radiation and chemo or inhibitors vs lumpectomy with no other treatment when lymph nodes are not involved. Just to see what the known differences are.
Its a tough thing. I hope never to do it again. I know you will be fine.
Keep an open mind. Doctors have wronged nearly everyone around me and there are literally innumerable cases of naturally-cured cancers, including a client’s wife.
Hang in there and don’t be dismissive of other options.
http://www.dailymail.co.uk/health/article-171377/A-change-diet-cured-cancer.html
No lymph node involvement is good news.
60’
Check out Johns Hopkins for the latest procedures & treatment.
With cancer in young women so common, I wonder about the medicine taken to dry up breast milk (not as common as it was since breast feeding is again encouraged). Also have to think about birth control pills (hormonal?) as a concern in breast & ovarian ca.
We take so many pharmaceuticals for just about everything.
Praying!
I will keep you in my prayers.
After a grueling MRI guided Biopsy, a small tumor was found and biopsied on R. Now I'm Stage 2 cancer, with a grade 2 on L, very small on right. We talk about possible double mastectomy.
Oncologist sent me for a PET-CT scan. More bad news, I have 4 small very suspicious tumors on the bone. Went for a robotic assisted bone biopsy of the tailbone (largest suspicious area). Surprisingly painless test, but pathology confirmed it was the same cancer. Oncologist breaks the news that now it is incurable, but treatable.
Did 11 weeks of weekly chemo with paclitaxol. We skipped the 12th when I told him that after going really well the first 9 weeks, the 10th and 11th were sucking the life out of me.
Did a follow-up PET-CT scan. significant reduction of size on the largest L Breast tumor, no sign of the R breast tumor, the spots on the bone were still there (of course, since they are incurable). The bad news was the glassy nodules in my lungs, likely an artifact of the chemo. Did a month on strong steroids, which definitely made me breath better, although I hadn't really noticed any breathlessness when all I could do for 6 days a week was lay on the couch (the 7th was chemo day, where the steroids to reduce reaction gave me super energy the rest of the day).
After the month on steroids, I went on Arimidex, which is the aromatase inhibitor - that's what will cause menopause because it stops production of 97% of your estrogen. I was already through menopause, rather painlessly, but the AI has given me furious heat flashes, plus sudden cold chills, which has been challenging to get used to.
Then I scheduled a double mastectomy with the surgeon, in 2 weeks. The pathology from the surgery showed it was the right route to go - all tumors were significantly larger than tests had showed. L largest one was 2.6cm, with 3 other smaller tumors that had been undetected. The R tumor was 2.1cm, much larger than ‘tiny’, with numerous smaller tumors. All L Lymph nodes removed and positive, plus extensive intrusion into the tissue around the nodes. R nodes negative - that was the bright spot.
So, I got a month to rest from the surgery, then was scheduled for radiation. I needed 2 weeks of physical therapy to be able to raise my arms into position (over the head) for radiation. Since I really wanted to get on with it, I had no problem working to get ready.
Early on in this, after the ‘incurable but treatable’ diagnosis, I went and analyzed my family records (I'm the genealogist), and told the oncologist there hadn't been a woman in my family die younger than 60 in 137 years, and I wasn't going to be the next! LOL! But seriously, 45% of those direct women ancestors for whom I had birth and death info lived to 80 or higher. My own mother had her first cancer at about 45 (Thyroid), and is now on her 5th (cervical, skin, esophagus, now breast), and she is 82. I think my family has cancer fighting genes as long as we don't kill off all our natural immune systems, so I decided to plan to live for 30 more years, to 87. I know that attitude is half the battle, and I apparently have lots of that...
Anyway, I did radiation, 6 weeks, 5 days a week to the L breast area, L lymph node area, Neck node areas, chest nodes, and something they did through my back, plus 5 days of ‘boost’ to just the incision. It took 4 weeks after that for the extensive burn-like wounds to all close on the surface.
During the radiation time I did some research on natural ways to boost the immune system or slow the growth of cancer. I know some of that works, some doesn't, and there aren't good ways to tell which is which. I did look at PAW PAW extract, which I saw in the context of something else, and was surprised to find that the National Institute of Health actually had a research paper on it. The test was on the extract from the twigs, and they tested it on breast, prostate, and some other common cancer (off-hand I don't recall which). They found actual results on both breast and prostate tumors, with a 50% rate of cure on breast cancers. It works through a different pathway than chemo, as instead of killing everything while hoping to get all the cancer, it uses mitochondria to identify cancer, and only kills those. And there are no side effects. So I looked around and found some, tried 10 days (as per recommendation). Since during chemo I had ‘felt’ it attacking the cancer cells, I knew I was feeling something with the paw paw.
Recently had my follow-up PET-CT scan from surgery/radiation. results were excellent. None of the bone spots had grown, some indeed were slightly smaller! That's not supposed to happen with ‘incurable’, they just expect to keep them from growing for as long as possible. I suspect the paw paw was responsible for the shrinkage, so I'm thinking about doing one week a month, which the suggested followup if you need more. You don't want to take too much, because after it has killed everything the mitochondria considers clearly wrong, it starts going after other, less wrong cells, most of which we need, so it'll look like it's attacking your internal organs, and of course I don't want that.
My case has some similarities to yours, but also some differences. I didn't have a lot of doubt about my treatment plan, because not only am I a research maniac when I want to be, but my sister also had breast cancer (Ductal, lumpectomy, radiation, going on 4 years without recurrence), but she researched too, chose Johns Hopkins because they were so up to date, and kept asking her providers about what I was doing since it was more intense than hers. They kept telling her that my oncologist ideas were right on the cutting edge with theirs, and that with the results she was telling them, they'd be doing the same thing. She was worried I was going with country doctors, I suppose, but I was going to Geisinger, where I got an oncologist who hates to lose as much as I do!
Great news n the stage 1!!
My mom had stage 3, node involvement, etc. Mastectomy, and tamoxifen for years. Cancer never came back and she lived a natural life span to 90.
That said, you will have to decide. It may be that the differences in treatment plans really offer only marginal differences in terms of probability of recurrence. That’s what you need to try to nail down. Truthfully, with stage one and no nodes, your changes are great. I just do NOT know anything to add based upon the genetic information. Still, so far, so good!
I’ve had colon cancer trice, both times caught early (stage 1) and I’m cruising along. Hang in there, buddy!!
You may need third opinion to break the tie.
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