More questions than answers

Anonymous · September 2015

I was just diagnosed last week with IDC (the day after my 51st birthday). I had none of the precursors for breast cancer except my diet was high in fat and sugars. I am perimenopausal (for about 8 years now) and started having heavy bleeding for 21 days last month. I went to my doctor for this reason and she saw that I hadn't had a mammogram in 5 years nor a pap smear in 3. She had both done along with uterine ultrasounds, which detected small uterine fibroids (history of these so wasn't surprised). I had the mammogram, then an ultrasound, then breast biopsy. I had my initial consultation with docs yesterday going over biopsy report. Only info I have right now (prior to surgery and other tests) is 1-2 cm (guesstimation at 1.6) tumor in right lower inner quad (4 o'clock area) of right breast near nipple, 95% estrogen and 95% progesterone positive, HER2 negative, proliferation index KI67 5%, grade 2, lymphovascular invasion suspicious (this one scares me the most!). They also say it was probably caught fairly early and slow growing. I have to go next week for a bi-lateral ultrasound and then possibly an MRI to double check other areas since my breasts are very dense and fibrous, so much so, they almost missed the tumor on the mammo. They think I am perfect candidate for lympectomy, so that will be scheduled for week of 9/14.

The waiting for surgery and path report is hard, but not as hard as it was waiting to have first consult with onc doc, radiology doc, and surgeon. I was SO upset during the first week of finding out the test was positive that I literally shut down mentally, spiritually, and physically for three days. I couldn't get off the couch nor stop crying, and all I did was google about breast cancer (which my doctor had told me NOT to do, but I am a self-prescribed worrier and researcher by nature!). I had to start taking Xanax just to function even a little bit. I am feeling much better after consult, but still worried and waiting. I am hoping to talk with others going through this stage of my diagnosis.

Also, if anyone has anyone researched the benefits of turmeric and cumcurin, I would be interested in discussing this as well. I am liking what I read about this as well as dietary changes (cutting sugars, fats, more veggies, etc.) and have also ordered a book called "Beating Cancer With Nutrician". I hope to learn more as I learn to navigate these forums. I know this was long-winded, but thanks for reading!

Moderators · September 2015

Dear Elishebejoy,

We're so sorry to hear your news. It must be a very difficult time for you now trying to get your head around everything and still having to wait to get more results. You'll find others here that will understand completely what you are going through and can help you through it all.

You might find the links below helpful in finding others to talk to.

Keep us updated!

The Moderators.

Complementary Therapies

Lumpectomy Lounge: Let's Talk

plumster1 · September 2015

Elishebajoy- I am sorry of your recent Dx. It is definitely a shock and hard to process. My stats as you can see in my signature line seem similar to the information you have so far. I also had an MRI after Dx to check nothing was being missed. I found the procedure easy to handle. I just sort of tried to zone out. Since I had no other "spots" I also had a lumpectomy. It was very manageable for recovery and there is a great board called the lumpectomy lounge to learn and share. That board has lots of great info what to expect and regarding recovery. The last piece you might have is the oncotype dx test on your tumor. Mine was post surgery. This lets you know based on your tumor characteristics if chemo would be of benefit to you. My test came back "low" range..so no chemo, no benefit to me. I am now on tamoxifen as I was premenopausal at diagnosis. I don't know anything about turmeric or curcumin. So someone else would have to comment about that. But my MO has me take vitamin d and low dose aspirin (5 days a week). Interestingly, I did ask my MO about diet. He did not specify anything to eat or avoid. I excercise and am at a healthy weight. So, I think that is almost more important. Keep us posted about your process. You are in the hardest part of your journey when there are so many questions while you wait for answers. Hugs!

Anonymous · September 2015

Plumster1-Thank you for your reply a couple of weeks ago. It was very helpful to read about your experience since ours is similar. I have since "adjusted" somewhat and am not so panicked as I was when first diagnosed. Since then I had a bilateral ultrasound done and no other tumors had been found in either breast with ultrasound imaging. Then last week I had my lumpectomy surgery and had two sentinel nodes plus two others removed and all came back negative and the margins were clear! The tumor they thought was 1.6 cm turned out to be just under 2 cm., and I am now waiting for my first appointment with my oncologist and radiologist. I was told by my surgeon that the oncologist would probably do the Oncotype Dx test to see if I am a candidate for chemo. He told me they used to automatically recommend surgery for any tumor 2 cm or larger, but that now they rely more on the oncotype to determine that. I was kind of surprised they didn't have that test done when they did all the other pathology tests on the tumor at time of surgery. Guess that is another question of the hundred I will ask my oncologist! I am praying for low percentage! As I understand it, I will have to have about 33 rounds of radiation instead of the usual twenty-something because my tumor was so close to the skin so the surgeon couldn't take as much tissue as he would have liked. Did you do well with the radiotherapy?

Do you mind answering a couple of more questions? Did you have any other tests done such as scans, xrays, MRIs after surgery? I had heard or read that even though margins are clear and nothing found in nodes, that it is possible that some cells might have escaped detection through vascular (blood) system. I know the chances of this are probably not very high, and maybe I am being paranoid. Also, since you were premenopausal (as I am), and are taking tamoxifen pills, which I figure they will prescribe for me: do you notice any ill effects from it?

Sorry for the long, detailed post, and thank you in advance for any info you can give. I feel like the only books and articles I have read in the past month have been about breast cancer! I told my husband that I feel like I have two lives: one before cancer and now this one with cancer. I hope you are doing well and staying strong! Thanks again.

plumster1 · September 2015

Elisheba- hi! Sounds like you are doing well. Congratulations on completing your LX, clear nodes and clear margins. That is awesome! As far as radiation, I was treated at an NCI treatment center. I was able to have intraoperative radiation therapy (iORT). That is during the LX surgery they radiate the place where the tumor was removed right then and there. So I had a one stop shop. I have heard though whole breast radiation is very tolerable. I'm sure you'll do fine. As far as LVI (lympho vascular invasion), I know on my final pathology it was absent. You can check yours and if you don't have a copy. I would ask your BS for one. As far as ordering the oncotype. I think it is typically ordered by the MO after final path is done. It is done by another company and would be different from the hospital pathologist who was doing your tumor work up. I have been on tamoxifen for almost 6 weeks now. It is very tolerable. I had a tiny bit of nauseous ness at the beginning. That has gone away. I've had a few aches and pains and warm flushes but those have been no big deal either. My main two SEs have been loss of appetite and greater acid refux. I am seeing my MO Tuesday and plan to chat with him about it. My MO, BS and PCP all told me most women tolerate tamoxifen well and don't let the Internet hype scare me. Keep me posted on your journey. I know the feeling of life before and after BC. But as I said before it does get better

ElaineTherese · September 2015

Hi!

Congrats on your successful surgery and your clear nodes! Yes, the Oncotype test takes a bit longer than the other tests. (I didn't get one because I'm HER2+, which means chemo.) I did radiation, and did fine. My boob turned red and was tender and sore by the end. But, after a few weeks, the sunburn look faded and now my boob is back to being pale. Because I was Stage IIIA, I've had a PET scan since surgery. For someone whose cancer was diagnosed at an earlier stage (like you), you probably won't get many scans. You'll probably just go for mammograms every six months or so. I'm not on Tamoxifen; I am taking an ovulation suppressor (Zoladex) and an aromatase inhibitor (Aromasin). Aromasin gives me hot flashes and made me moody. MO prescribed Celexa for the moodiness, and now I'm fine. Best wishes to you!

Spookiesmom · September 2015

You've gotten good advise, and as you learned, Dr Google isn't your friend. I would suggest you write all your questions down, and take DH, or someone with to appt. for an extra set of ears. There is so much to process, you tend to zone out.

Best wishes, you can do this.

dtad · September 2015

Hi there. Sorry you have to be here but I know you will find this forum very helpful. While reading your post the thing that stood out was possible MRI of your breasts. IMO if your breasts are dense this is an absolute must before any treatment plan is made. I was all set to have a lumpectomy with intraoperative radiation BEFORE I had a pre op MRI. It picked up another malignancy that did not show up on mammo or ultrasound! It also showed 3 other areas of suspicion that turned out to be benign but biopsy revealed some fibrocystic pre cancer areas. Ended up having a BMX and very glad I did. So if I had gone the lumpectomy route I would have not known about the second tumor until it was large enough to show up on mammo and or u/s. Also they would have probably thought it was a recurrence at that point. So please get the MRI!

WinningSoFar · September 2015

Dear E,

So sorry that you are now in the sisterhood. I was just about your age when I was first diagnosed, with similar hormone markers and stage.

I wouldn't be too quick to blame your cancer on your diet. About 10% of breast cancers are hereditary in nature and 90% are sporadic, meaning mutated genes that either cause cell growth or shut off cell death. That's one reason you see so many targeted treatments coming out (and in trials) that target certain genes or proteins. None of them seem to target food. Just saying, you can let yourself off the hook.

When I was diagnosed with my second case of BC (lucky me, a two timer), I went through breast MRI and all sorts of scans to make sure that the docs knew the full extent of my cancer. Granted, my second case was inflammatory which is definitely more serious. But the MRI and the scans did show more cancer, even though my lymph nodes seemed clear. I would definitely recommend at least a breast MRI.

plumster1 · September 2015

E- I forgot to add in my earlier post. I did have a breast MRI before my LX and was all clear for any other spots. I have not had any other tests post LX but it has only been 2 months.

owlwatcher · September 2015

Dear Elish, The breast mri is one more way to find out as much about your breast. mammos, ultrasounds, biops., and mri all provide a different picture of the puzzle in different ways. And the oncotype test is another piece of information. Sounds like your team is on top of the situation. By the way even if we were all physically fit and ate perfectly healthy disease would still invade our bodies. That is just my perspective as a 65 year old person that has observed life.Keep posting we want to hear more about your journey.

Anonymous · September 2015

Thanks everyone for the MRI info. I will definitely ask my oncologist about getting one asap. I didn't realize the importance of having this done, especially since the bilateral ultrasound came back clear. I was told by my ultrasound radiologist that my breasts are pretty fibrous and dense, so much so that they almost missed this tumor (almost 2 cm) on the mammogram and ordered the ultrasound to be sure, so I would think I am a strong candidate for the MRI. There is so much info about treatments, what to do, what to avoid, that I get confused, but this forum, and hearing from all of you is very helpful! I've had several people tell me to try to go with proton therapy instead of radiation, but when I mentioned that to my radiologist (at the initial get-to-know-you consultation), he said that proton therapy wasn't really a better option for breast cancer. I'm not sure if he is just saying that because he is a radiologist and that is what he does, or if it is really true. I thought about trying to get a consultation with the proton therapy people just to get their take on it. If anyone here has had any experience with proton therapy, I would be interested to hear about it.

Thanks again for your advice, and know that I will act on your suggestions!!

Anonymous · September 2015

I actually got my pathology report in the mail today! It stated: "lymph-vascular: not identified", so I take this to mean that they didn't find any. If that is the case, then this is good news also! I felt like I needed a degree in medicine and/or science to understand all the medical jargon that came in the four page report!

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