Tumors > 5 cm

shells43 · July 2010

Anyone else with a large tumor? I'm not sure I'm staged correctly. At first the BS just said > 5 cm as he was doing my ultrasound. He told the nurse "don't go off the screen". That was alarming. Post surgery I found out it was actually 9 cm encapsulated IDC, but no positive lymph nodes. Does this still keep in in Stage 2? I'm not asking for trouble, just want some reality. I had a simple mast and am mid-chemo now with rad to follow since I'm just 43. If anyone has any info that would reassure me of my staging that would be great. I haven't had any scans or genetic testing. I'm finding it difficult to believe since I see other posts with 1 cm IDC in stage 4. Very scary.

dlb823 · July 2010

Hi, Shelley ~ If you go to the informational section of this website -- very top bar -- Symptoms & Diagnosis -- and search "Staging," you'll find this definition of Stage II:

STAGE IIA and IIB

Tumor less than 2 cm and/or lymph nodes under the arm involved (IIA) OR
Tumor greater than 2 cm but less than 5 cm and lymph nodes involved (IIB) OR
Tumor greater than 5 cm but no lymph nodes involved

It looks like as long as your nodes were clear, your diagnosis is Stage II. Deanna

pod1257 · July 2010

Hi Shelly-

Just wanted to send a positive story. My mom was dxed with a 6.2cm tumor, premeno, no lymph nodes. It was encapsulated, just like yours. At that time she had a single mast and no other treatment. She is now 30 yrs out at 86 yrs old and doing pretty well for her age.

A large tumor can be slow growing, like my mom's and the fact that is encapsulated, in my view is good news.

Best of luck.

May we all live into our 80s and beyond. By the way, I am a survivor as well, stage 1, no nodes, 4 yrs out.

Julie

shells43 · July 2010

Wow, thanks, that is very encouraging to hear. Thanks Julie and Deanna. Trying to stay positive. Best of luck to you both!

Rocket · July 2010

Hi Shelley43,

I'm at stage 2A, grade 2. I had three tumors in my right breast and no positive lymph nodes (3 sentinel and 10 axillary). The largest tumor was 3.9 cm and the others were 2.1 and 1.7 cm. They were all in different quadrants of my breast (multicentric). The surgeon's PA told me prior to my surgery that it was very unlikely that it hadn't spread to my lymph nodes. They only knew of the largest tumor at the time. After my bi-lateral mastectomy, they were shocked to discover three cancerous tumors in the same breast and that none had spread to my lymph nodes. I had asked if there was even one cancer cell in my lymph nodes would it count as positive and my oncologist said that even if there was one cancer cell, it would be considered positive. She said I had three gentle giants for tumors by the fact that they hadn't spread. I also had a bone scan and a full-body CT scan and it revealed no evidence of metastasis. I had chemo and will finish radiation this Friday. I'll also have a hysterectomy/oophorectomy in August and am on Arimidex because my tumors were estrogen and progesterone positive. Do you know if yours were? Did you have the Oncotype DX test? The fact that you had no lymph node spread is important. How many lymph nodes did they remove? From the information you provided you would be considered stage 2B which is still early stage breast cancer. That is very encouraging. Hang in there! You will get through this!

shells43 · July 2010

Hey thanks, Rocket, for the encouraging words. I know they did a sentinal node biopsy, which I think is the closest two nodes and there is an incision in my armpit from the SNB I guess. I'm really not sure how many they checked. I remember they checked some during my MX and came out and told everyone they were negative, and then some were sent off, which were also negative. So hopefully, that's the case, but I haven't had any kind of scans. I know they recommended the chemo and radiation since I'm under 50 and due to the large tumor size. I'm fine taking it, who wants to take any chances?

I like your term "gentle giant" and think I will call it that from now on. The size was the most alarming thing for me. I'm glad your nodes are clean, too since that seems to be so important.

Congrats on almost being done with radiation! How do you feel? Was it fatiguing? My BS says it is nothing compared to the chemo, so I'm sort of looking forward to it (know what I mean?)

No doc has suggested I have the Oncotest done, not sure why. I guess it doesn't matter really since I'm having the chemo/rad. My tumor was estrogen receptor positive, but I haven't heard what the Arimidex is for. Will look it up. Is it if you are postmenopausal?

Well, gotta get some sleep. Have a great day tomorrow!

Rocket · July 2010

Hi Shelley,

The fatigue from the radiation didn't affect me a lot until the last two weeks. The fatigue was not nearly as severe as with the chemo, however it seemed to come out of the blue and I would feel exhausted. I have had terrible insomnia since I began taking the Arimidex also, and it may have contributed to my exhaustion as well. I was able to work at my job throughout my treatments. I'm really glad they did the oncotype test on me because it gave me a little piece of mind when I couldn't continue the chemo due to a heart condition. I finished three out of four rounds of chemo. I was hospitalized after round two because my heart rate would jump from 80 to 201 in a matter of seconds. It did this for six hours straight before they finally got it under control. They had to change the chemo regimen for round three, and with my doctor's advice I stopped chemo after that to protect my heart. My oncotype score came back a 16 which showed a low risk of distant recurrance.

I was premenopausal, (age 49), and the onc has given me Zoladex injections monthly to chemically stop my ovaries (making me chemically postmenopausal) prior to my hysterectomy/oophorectomy which is scheduled for Aug 11th. The Arimidex lowers the amount of additional estrogen which is produced by other glands in your body. Since we have estrogen receptive cancers, this therapy will try to prevent the estrogen from binding to cancer cells and causing them to grow.

I would ask about the bone scan and CT scan as well. They did them for me to see if there was any indication of metastasis. Fortunately there was none.

There are a lot of brave and knowledgeable women on this site that can help you tremendously to get through this difficult journey. I know they have been incredibly helpful to me. Keep us posted on your progress.

flannelette · July 2010

Hi Shelley -There are a few posters on different boards who also had BIG tumors and no lymph involvement and they might see this post and send your their stories.......we're kind of mystified - like - what happened????? I could tell you my cabbage juice story....

I was dx 2 yrs ago with a 6 inch! tumor. IDC. After surgery my surgeon said it was more like 4 inches, lots of what looked like DCIS mixed with IDC. Chemo, radiation, arimidex. No lymph - they examined 6 nodes.

had all the scans looking for metastases - nothing. Examined every 3 months, now every 6. I do try to do some of the things re health on some of the alternative threads.

I never let anyone tell me my stage, for fear of getting fixated on stats and quite possibly becoming depressed - the absolute worst that could happen, for me. But I am stage 2b. found out here, when I was ready. That's totally ok, imho.

And all that was 2 years ago - and here I am! so - be happy, try not to focus on stats, take care of yourself, please feel free to private message me.... and best of luck!

\

shells43 · July 2010

Thanks girls, I just watched the video on Arimidex. So technically I'm not postmenopausal yet. I guess we'll see if I get my period back after the chemo. I'll ask about scans at my next chemo and see what the plan is.

Rocket, sorry about your heart problems. I've had an irregular heart beat on and off since my first chemo. Nothing like yours racing, which sounds terrifying. It does wake me up at night sometimes though, I can feel it in my chest going all weird. It never happens when the doc listens! Good luck with your hysterectomy. You are just about 2 months ahead of me in DX, so how are you doing with your MX recovery? Are you still stiff and sore? I'm still stiff every morning and my armpit aches where it is still numb. I can't imagine a bilat. Did you have PT?

Thanks for the upbeat words Souad, I needed that. I PM'd you.

Rocket · July 2010

Hi Shelleyj43,

The chemo didn't cause my heart condition, it just brought it to the surface. I have experienced palpitations prior to chemo, but nothing I really thought much about. I had mentioned it to my GP once a year, but he didn't seem concerned. The chemo (Taxotere) was the drug that caused my heart to go crazy with tachycardia. About a minute after it started to drip into my veins, I experienced the racing heartbeat. Then it stopped and when I was finished the chemo session it really started going again on and off for the next six hours. I almost passed out from it twice and they admitted me to the hospital to try and get it under control which, fortunately, they eventually did. They had to switch my chemo regimen to Adriamycin and Cytoxan. Adriamycin can cause heart problems so after a dose of that and several episodes of my heart palpitating they decided to call a halt to the chemo. I managed to complete three of the four rounds so I figured that was good enough.

As for the mastectomy recovery, I have regained complete use of my left arm where I had my left breast removed prophylactically. I decided from day one to be very aggressive with my treatments. The right breast had 3 sentinel nodes removed along with 10 axillary nodes. My right arm has suffered nerve damage. It felt like the back of my upper arm was burned and like a blood pressure cuff was strapped to it and pumped up to 200 and left there 24 hours a day. I was given Neurontin/Gabapentin for the nerve pain. It has helped tremendously. Currently the scar area is still numb on both sides and I still have pain and numbness in my right arm. I have also developed truncal (chest) and arm lymphedema. Fortunately it is mild in my arm, but I have to wear a compression sleeve every day. At night I wear a compression vest to reduce the swelling in my chest. The scars themselves don't look bad at all. I had drainage tubes (one on each side) under my arms and I still experience some swelling and pain there especially in the evening. It takes time, but in a couple of months you should notice some real improvement. I go to PT every week and that helps considerably too. My PT gave me exercises to do which helped a lot especially as I was preparing for radiation and knew that I'd have to get my right arm over my head. I could never have done it without her help. You should ask your doctor for a referral to a PT. When do you start rads?

shells43 · July 2010

Hey Rocket,

I don't have a date for radiation yet, but it should be 3 weeks after my last chemo. Tentatively that would be late August. It took a long time to be able to reach over my head and it's still a stretch, literally but I can do it. I hadn't thought about needing to do that for radiation. Guess I will work on it a little more.

Sounds like you've really been through it with having both sides done. The back of my arm also hurts, and on the underside where it rubs on my side. sometimes I have to consciously lift my arm up because it bothers me so much. I hope that will go away with time. I'm not having any lymphedema issues, thankfully, I think because I had so few nodes removed.

Here's to our recovery! We'll be through all of this by fall. Hugs!

nailgal2 · July 2010

Hi Shelley,

I was dx on Oct 12th '07 ...I had a very large mass also..I think around 5 cm (about 3 inches?) .. I honestly can't remember anymore! (chemo brain?) I had 4 treatments A/C 1 of taxol..had a reaction (neuropathy in my feet and hands) so I had 9 treatments of Taxatere instead...which IS buffered Taxol.... well there is a long story about all my side effects from Taxatere...long story short .. I am here and in remission.woo-hoo! I have atrial fibrulation..only have had 5 episodes in 30 years...all at hormonal times..baby's birth, menopause...and after chemo finished...(2 weeks after) luckily ..I never had a heart issue during chemo tho. After chemo ( finished end of March '08) I got real sick so I had a bilateral mastectomy in June...I opted for both breasts to be removed...only had it in my left. Had 5 1/2 weeks radiation, which I think I started in July. When i started I could not put my arm over my head so they put it in an 'L' position.. it was as far as I could put it then. Everything went fine. Being numb on the left side was a blessing cause I really didn't feel anything. For me radiation was very easy. I did burn but the nurses handled it very well. NOT scary...

I did have 3 lymph nodes involved...the sentinel and 2 closest to it. The surgeon did a complete dissection on the left side and all were tested. I did develop some lymphedema but I went to OT and the therapist helped me alot. I now have almost full range of motion on the left and the right is fine. I can raise them both the same! I only have to wear my sleeve (and a glove) when I fly... or if I ever see a swelling problem (which I haven't) I do think I have some truncal swelling... because I wear the same size bra (back size) as I did when I was 50 pounds heavier!

I had reconstruction at the time of mastectomy...had 1 fill before radiation and then because the skin becomes "tight" during rads..it wouldn't stretch...I had another surgery ,called for short, a "lat flap" surgery... where skin and muscle from the back (lattitimus dorsi muscle) is tunneled under my arm to help form the breast ( the muscle does the forming around the sides of the breast and the skin is patched in [ near nipple area] to add more skin so it can be stretched) the area around the scar on my back is where I think it is swollen and under the arm where they tunneled thru. It is not noticeable to others tho....

I am fine now...I feel "normal" again. Actually I just had a little surgery today...an oopherectomy. (ovaries and fallopian tubes removed)

Not too bad at all...so far LOL... just a little sore at my belly button area... and of course bloated.

My cancer was hormone fed also but I was post menopausal at dx so this surgery was my choice... I am on arimidex also... and calcium and vitamin d.

Good luck...you are over the worst so far in my opinion....

Pati

Rocket · July 2010

Hi Shelleyj43,

You are doing great! If we both are as tough as Nailgal2, we will definitely get through this! My hysterectomy/oophorectomy is being done because I am allergic to the Zoladex injection to chemically stop my ovaries from functioning. It's just easier to have them removed. I opted for the complete hysterectomy along with the ovary removal. For now I have decided agains breast reconstruction because I've had a lot of problems with the nerve pain in my arm and I'm scared of making that any worse, especially now that it's starting to improve. The radiation is a piece of cake compared to the chemo in my opinion. I had seven weeks of radiation. Only the last few weeks did I see any sunburn like skin or feel more fatigued. You will get through it. Have you had a lot of hair loss? How are you handling it?

shells43 · July 2010

Thanks for the info Pati, and congrats on your remission! Just a little surgery, huh? Doesn't sound like it. Must have been laproscopicm but still, it's surgery. Best wishes for a quick recovery!

Rocket & Pati- I've been trying to find out how the chemo regimen is different for premenopausal vs. postmenopausal women. Why would you both have that surgery if you are post-menopausal? If estrogen production has stopped, I don't see why it would be necessary. Can you explain?

Regarding hair loss, I lost a lot about 2 weeks after my first chemo. It was coming out so much that my pastor (a woman) volunteered to shave it for me when she did her husband's buzz. I had some friends come and we ate brownies and drank wine... it was sort of fun. Anyway, after that I felt more in control and didn't have to clean out the shower drain every day. I wore a wig to work the next day, but it was annoying and itchy. Ever since then I've just been wearing bandanas and scarves. It was a giveaway then that I was having chemo, but it allowed a lot of people to tell me they would be glad to do anything, bring meals on chemo days etc., so I'm glad I did it. I wear the wig to church still. The old ladies say I look like Laura Bush, they love it! At home I wear my scarf or go without if I'm hot or swimming, etc. My kids are 18 and 20 so they are old enough to understand and don't seem to mind much. DH doesn't mind either, says I have a nice head. I would say I've lost most of it now, maybe 90%. I stll have some stubble from the original buzz.

Re: reconstruction issues - after looking at the pictures in the Scar Project website, it confirmed that I don't think additional surgery is in my future. I'm with you, no recon. I wasn't that impressed by what I saw. If that is how it's going to look, I think I'll pass. I don't want to risk getting any infections or anything. I do have a wad of fat that is in the wrong place sort of under my armpit that doesn't belong. I think if I could have that lipo'd out, I would be happy with the appearance. Well, maybe not happy, but ok with it. How did you decide Pati? My surgeon did not mention anything about reconstruction during the mx. Maybe because he scheduled me so quickly? I didn't ask either.

Rocket · July 2010

Hi ShelleyJ43,

I was pre-menopausal when I was diagnosed with breast cancer. I am 49 years old. I don't think it makes a difference if you are pre- or post menopausal in the choice of chemo regimen. Actually if you are pre-menopausal prior to chemo treatment, the chemo usually puts you into menopause (chemically that is). Many survivors refer to it as "chemopause". After the chemo stops however, some women's ovaries begin to function again. This becomes an issue for women with estrogen positive tumors. Estrogen, the bulk of which is produced from the ovaries, provides the fuel for such tumors to grow. Aromitase inhibitors do not stop your ovaries from functioning. They prevent the small amounts of additional estrogen that are produced elsewhere in your body from forming. In order to stop the ovaries from functioning after chemo is completed, women are given the option of oophorectomy (surgical removal of the ovaries) or a monthly abdominal injection with a drug like Zoladex to chemically stop the ovaries from functioning. I have had an allergic reaction to the Zoladex injection, so I have elected to have my ovaries removed. I also decided while they are in there they might as well do a complete hysterectomy as I don't want to have to worry about uterine cancer either.

I too looked at the before and after pics of reconstruction and even though I'm small and miss my small breasts, I'm just not willing to deal with more lymphedema problems and nerve pain in my arm and chest. That's why, for me, I'm okay to forego reconstruction. I might change my mind way down the road, but the rad onc told me it would be at least 2 years before I could consider it because I had radiation. I can't wear my prosthetic breasts right now as I'm still healing from the rads. At least I don't look too bad flat as I wasn't big breasted to begin with. Smile I will be happy to wear the prosthetics again though as most of my blouses and tops were made for women with breasts. It's a good thing that the styles this year have a bit of gathering in the front. I've worn a lot of tops like that while going through radiation.

Tumors > 5 cm

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