Invasive Ductal Carcinoma

rhonaa · April 2018

I received diagnosis on October 2nd, had MRI on October9th and went for second opinion on October 13th. I went with the second opinion people and started A/C therapy on November 2nd. I finished the first four treatments by December 16th, but could not continue with the rest of the chemo and a combo of Taxol, pertuz, and herpacin. I was hospitalized with abdominal issues in January and had three emergency surgeries -- two abdominal and a lumpectomy on January 17, 2018. The breast surgeon removed the dead tumor(s) and I had clear margins. Unfortunately, he came down with the flu after he operated and I did not see him when I was discharged. He did call me when I was home and said the results were excellent although I do not know how many lymph nodes were removed and how many were cancerous. I went back to oncologist at end of February. She told me that I had to continue on Herceptin every three weeks for the next year. I started on Herceptin on March 15. I cannot be on the other two chemo drugs. I lost part of my large intestine. She then tells me I need radiation and sets up a meeting with a radiation oncologist. I could not make appointment as I had a cold and we had a snowstorm in NY the following day. I saw her on March 30 and she tells me I need a mastectomy if I don't undergo radiation treatment. I cannot travel five days a week for a month for radiation. I also have degenerative disc disease with bulging discs. The trips into the city are killing my lower back and I am losing feeling in my legs and am getting to the point where I cannot walk. Can radiation be skipped? What questions do I need to ask radiation oncologist tomorrow. I work from home at this point as I am unable to travel into the office -- I sill have not gotten a wig either.

Is radiation a must?

rdeesides · April 2018

If you had a lumpectomy, radiation is a must.

gb2115 · April 2018

They should have explained to you, when going over options, that lumpectomy = radiation. Your chance of recurrence is much higher if you skip radiation. I was given the choice by my surgeon... either mastectomy (and still maybe some radiation) or lumpectomy and guaranteed radiation.

Sorry you are hurting with all your traveling. Hopefully some sort of solution will pop up!

mustlovepoodles · April 2018

I actually more alarmed that you're losing feeling in your legs and might not be able to walk! Those are very serious symptoms. It sounds like something may be impinging on the spinal cord. Have you discussed this with your orthopedist?

Polly413 · April 2018

I have IDC and had a lumpectomy and sentinel node biopsy that showed one positive lymph node of three. I am stage IIA and Grade 2 with a tumor less than 1 cm. I had AC/T and am on Femara. I did not have radiation. I am comfortable with that and so is my MO. Radiation increases your chance to avoid local recurrence (its not a guarantee) but does not improve your chances of overall survival. Some researchers have concluded that if you have radiation and the cancer does come back it will be more aggressive than the first cancer. My tumor was on the left side and I was concerned about my heart as well. One factor that may make a difference for me is that I am 73 and have less time for the cancer to come back. I am not advocating anyone forego radiation but I am responding to the question about anyone foregoing radiation. For what its worth in 2000 I had a lumpectomy on the right side and refused radiation. Over 18 years and I have had no recurrence on that side. Polly

Polly413 · April 2018

One final point: As I stated, I did have chemo. If I had had a lumpectomy and no chemo, my decision to forego radiation may well have been different. Polly

rhonaa · October 2018

Sorry to bring this up again. I had more abdominal surgeries for an internal hernia in April of this year. The surgery was open and produced a very large wound. The wound partially healed in late September. However, the surgery left terrible cuts, an irregular abdomen and no belly button. I feel like a mutant and cannot even look at what the surgeon did to me. I had the lumpectomy on January 17 and was still asked to have radiation even though it is almost ten months since surgery. I have very sensitive skin that burns and am on Mercaptopurine for Crohn's Disease which makes for a longer healing time. Must I continue to punish my body further with radiation? Never had follow-up with breast surgeon as he was out on network and nothing explained to me. Oncologist is bit of an uncaring nut. She did not listen to be when the chemo treatments were making me ill. I only was able to receive four A/C treatments, before having a bowel obstruction. I have been though too much and have no help at home. There is just so much a body can take.

Any suggestions?

CindyNY · October 2018

I don't know anything about it, but isn't there some type of radioactive seed that can be implanted? If I we're you I'd do some research. Best of luck to you.

Polly413 · October 2018

rhonaa - In 2000 I had DCIS on the right side and had surgery (lumpectomy) only. My MO at the time was comfortable with my declining radiation. Have had no recurrence on that side after 18 years. In 2017 I was diagnosed with IDC on the left side. I did surgery (lumpectomy), chemo and am on Femara. I did not do radiation. My current MO is comfortable with this decision based on my own circumstances. It is the gold standard to do radiation after lumpectomy but it doesn't always make sense in an individual case. Studies do not agree but some find that radiation does not improve overall survival time. All seem to agree that radiation does decrease the risk of local reoccurrence. The wild card is that there are SEs and serious risks to radiation especially if cancer is on the left side. I wish you did have a good MO to discuss your own case with. Good luck with your decision. Polly

NotVeryBrave · October 2018

I would recommend a second opinion. Even if they agree with the first - perhaps they would be a better fit for you. It's always helpful to have another opinion.

Also - you are your own best advocate. And just because something is recommended does not mean that you have to do it. Legally, doctors are going to recommend the "standard of care" - the protocol with the best results by research. That does not mean that it's alway the best thing for you, personally.

Invasive Ductal Carcinoma

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