I'm considering refusing chemo

Good news no cancer. I also have mild arthritis in spine and neck. I blame AI drugs.

Not to worry, Nancy. Just because you have arthritis does not mean you necessarily will have symptoms. My bone scan, similarly to yours, showed arthritis in just about every joint. except the joints that actually hurt. A couple of years later (and having switched from arimidex to tamoxifen), I have absolutely no pain in any area, just the occasional tweak in one hip. My guess is that if all of us had bone scans, pretty much all of us would find we had arthritic surprises that never will show themselves in any other way.

I do pop the occasional aspirin or other anti-inflammatory to help keep those spots at bay.

I had a Lumpectomy with lymph notes removed. Stage II cancer. This was followed by several weeks of radiation. My doctors put me on chemo pills, they were debilitating, I tried, but it was a horrible experience. I decided to stop taking them after one week of hell. My doctors then all decided I needed chemo. I questioned why, as they all said I was cancer free. It was a preventative measure, they all told me ... just in case.

After much deliberation, I refused. I did much research and decided to take a chance. Doctors were not happy with my decision so they scheduled me for a PET scan. What is that? I asked. It is a test (similar to a CAT scan) that can tell if there is cancer in any part of your body. (They save this alternative for last?) I had the test. Everything came back negative. This was 5 years ago. All my blood work, mammograms, etc. come back fine... no cancer. I have been tested every six months since.

Just my experience, you have to do research, then make your decision. There are just so many negatives with chemo. For me, I made the right choice.

Good Luck!

Although I am MUCH older than you, I too want to refuse chemo.  I was originally diagnosed with stage I invasive breast cancers with 2 masses and 2 different type of cancer cells (estrogen and progesterone)  in one breast and none in the other. I underwent mastectomy end of September, and unfortunately the cancer had spread to one lymph node by 5mm. Others were not affected. PET scan revealed no progression of cancer anywhere else.  BUT because my GENE test showed me at  "high risks", they now want to do chemo.  I have seen what chemo does first hand with my son who underwent chemo and radiation at 34... He lost his short term memory and has permanent neuropathy since 2004. At 75, what are my chances considering I have heart problems, and BONES problems ie spine degeneration, severe arthritis and osteoporosis at the lumbar?. I am very petite, and I feel I won't survive the poison of chemo drugs.  IF they really have taken the cancer out with the operation WHY would the risks involved with chemo be benficial to a patient with health and drugs intake issues?  I would rather have pills to suppress estrogen rather than trying chemo...  I am like you, skeptical, and fear the worst in the name of "preventive treatment" in case of... What was the point to have mastectomy then???!!!  Why did they just not do the chemo and/or radiation instead of putting me through so much pain with the surgery and reconstruction!  I am still feeling stabbing pain like mad!!! Now they STILL want that chemo!!! I do not get it... 

ca1943, I totally understand where you and anyone else who wants to avoid chemo are coming from. The more I read, the more I want to say no. I have to meet with the powers that be, hopefully in Novenber, and listen to what they say, but I know I have the option to refuse, and they cannot refuse to treat me if the cancer comes back. All the best to you in your journey.

Nancy, in your reading about chemo, please do be sure you are reading about chemo for grade three triple negative, where chemo can significantly reduce your chance of recurrence. In the case of more slow growing cells, chemo is often counterindicated as its effect can be minimal. Much of the literature out there is slanted toward those who might not need it anyway. You do want to be sure that your research is targeted to you and your tumor.

Another thing to consider about TN is that it is more likely to metasis than to recur in the breast. I would never be able to move on with my life without getting chemo and rads, knowing that that is the only treatment available - I'd be a head case. If I were older, I'm 45 with two kids at home, and/or had other serious health issues, I might have decided differently.

Update! I saw the oncologist yesterday and ALL tests have come back negative for cancer, so I have chosen NOT to do chemo. I have decided to do the radiation, not because I really want to, but because it makes sense that if there is a possiblity of stray cells in the breast, to treat it without affect the whole body. Most people are not in agreement with my decision, and perhaps the radiation is also a compromise for them, but the oncologist will have a teleservice meeting with me in January and I return to see her in April. She asked me if I would leave the door open for chemo, and I said yes. I got a call today that I go to see the radiation team tomorrow, so things are moving along. I hope things are going better for all of you.

Thanks, Meow13. I I am glad that you have done well without the chemo. I wonder if you can explain to me what A1 drugs are.

Thanks VL22. I just listened to tHe recoding of the meeting with the oncologist. I don't think the 7 percent better chance of survival is worth taking the chemo. The two chemo drugs would be taken together and I am told by my nurse navigator that they are extremely harsh on the body and would definitely have major side effects

Thank you, Marijen. The drugs they recommended for me are Docetaxel (Taxotere) and Cyclophosphamide. Serious risks during treatment include infection, increased risk of bleeding, tissue or vein injury. Also the possibility of Leukemia and Neuropathy.

COMMON side effects: nausea and vomiting, allergica reactions, hair loss, mouth sores, fatigue, nail changes, diarrhea, elevated blood sugars (as a diabetic, I can't afford that), difficulty sleeping, swelling in hands, feet, lower legs, mood changes, pain, low white blood count. I am sure you all know all about that. What a nightmare! I admire the women who take the risk, but I am sure many are much younger than I am. My husband is older than I am and not well, and we have no children, so perhaps that makes it easier for me to refuse chemo. But I stand by my choice, and the door to reconsider has been left open in case of recurrence.

I had blood work done yesterday and they are looking for tumor markers; if the results are high, they may delay the radiation therapy so that the surgeon can see me again. It is all a game of chance. My appointment with the radiation oncologist is tomorrow. Very fast response, but they told me because I am already three and a half months past surgery, they need to put a rush on it.

Meiw13, I know I will have the tumor markers checked in January and again in April. A lot can happen between now and then. What stage was your cancer Thanks for your good wishes.

Congratulations on your scans/tests being clear.

I just wanted to correct one misunderstanding above. Just because scans/tests are clear does not mean that individual cancer cells (which are invisible on scans/tests) have not escaped the tumor prior to its removal. Chemo kills those individual cells or collection of cells (which are not visible on scans/tests) that may already be circulating inside the body, in the lymphatic system or in the bloodstream. These cells may cause distant recurrence (metastasis) in the future in a different part of the body or organ. Getting radiation in your breast will not kill these circulating cancer cells.

These circulating cancer cells also get killed by anti-hormonal treatment which is NOT an option for TBNC, and this is why chemo is recommended for TNBC even for small tumors which are not pathologically found in the lymph nodes.

Of course, I hope no cells have escaped your tumor, and that you will be fine and completely recurrence free in the future, whether or not you decide to do chemo. However, I wanted to mention the above because it is important to be fully informed in the making of our chemo/no chemo decisions. I have found that sometimes our doctors are not the best in articulating the nuances regarding why these treatments are needed.

I wish you all the best.

I have now finished my proton radiation treatments (33 of them!). Went through hell with the burning and itching, but at least no side effects worth mentioning, and certainly NOT as chemo could have given to me..  After my mastectomy and lymph nodes removal, they too said I should do chemo, radiation and aromatase drugs as a preventive measure. Preventive is NOT justifying all of these detrimental treatments to my health at my AGE to begin with.  One has to take into account, what chemo can actually DO to an older body in the name of "prevention".  "Preventing" is "guessing" that one will get her cancer back; well I am BETTING I won't!  With God's help and my strong faith, I feel I have done enough to control the "beast" from coming back or doing more damage to my body... Believing is Winning, and "Guessing the what IF" is "Defeating"... SO, let's time play its role with God supervising it all for me!  God bless us all!  We are conquerors and can beat that darn cancer!

53Nancy, you are further down than I after your radiation ended, but not sure you are older than I... I turned 75 on 1/3/18.  I just had my cardiologist visit, and he placed me on a heart monitor as I experienced some issues with the heart's rymths during radiation treatments (which some issues were there before anyway). I am not too terribly anxious about the readings' result on 2/21. What I am anxious about relates more to the aromotase drug I am supposed to take shortly... Side effects are debilitating and I am not too excited about even starting on the regimen. Has your oncologist placed you on estrogen dominance's suppressant drug?  And if so, are you having some serious side effects from the medication?  I know I refused chemo so I might not be able to get away from not taking that Femara drug... Stay strong, keep the faith!