Topic: tubular carcinoma

Sep 4, 2016 08:17AM - edited Sep 4, 2016 08:18AM by Briley73

hi grainne I live in Dublin now but orig from Galway but also lived in the states for 23 yrs! Just back in Ireland 5 yrs... Im very uncomfortable with rads and tamoxifen! (See my last post to isee)... Did u have pure tubular? Good to hear no side effects from snb... I have s strong family history also.. 2 sisters one passed away last October.. Sadly she was dx at stage 4 terminal... My other sister was caught early and is doing ok now but she has had rads and is on tamoxifen she is younger than me... My main aim is to resume to the same quality of life I had before the cancer so I want to minimise my side effects as much as possible as this cancer would allow.. I think with this cancer that is some scope to take risks that I am comfortable with.. Right now I have all my options on the table including risk reducing prophylactic mastectomy with immediate reconstructive surgery.. But still weighing the pros and cons... Will be meeting with a geneticist to discuss risks etc..What was ur exp like with the hospital in Antrim?

Sep 4, 2016 09:02AM - edited Sep 4, 2016 09:05AM by isee

Hi again Briley,

I was also offered a double mastectomy due to my family history (as they didn't yet know my BRCA2+ status at my time of diagnosis). My cancer was very close to the chest wall apparently, so my rational for not having it done was that I felt with the cancer being so close to the chest wall and the type of cancer that Tubular is, with all the little branches, rather than a lump, I was worried that they may have missed some during my surgery and if they did a mastectomy, they would no longer be looking with ultrasound and or mammogram and the cancer could reoccur. If there is something going on, I want it found early and treated. Not left to spread. Also, my sister who had breast cancer at 37 (DCIS I believe) and was aggressively treated because of her age, had a lumpectomy, rads, and chemo had a reoccurance in both breasts just last year at 61 years of age. She opted to have a double mastectomy, and then take tamoxifen. She was planning on having immediate reconstruction but was told by the doctor about 2 days before the procedure that she needed to lose weight before they could do the reconstruction. She went ahead with the double mastectomy and I have to say is one of the unfortunate ones who has had to deal with several complications since her surgery. One of which is that she feels that the skin on her chest is too tight and pulls, causing pain. The other complication was blood clots that developed a short time after the surgery. I'm not sure if they were from the surgery or from the Tamoxifen, but she had to give herself very expensive injections in her abdomen daily, for months. She has recently seen a specialist about her chest skin tightness and he said it is a complication in about 10% of mastectomy procedures. He is going to do more surgery and recut the chest in a zig zag pattern to allow the tissue a bit more flexibility and so it is not so tight. Hopefully this gives her some relief. Anyway, if I had to have a mastectomy because my doctor tells me I need to I would, but I will not opt for it as a preventative measure. It is a major surgery and if lumpectomy and rads can take care of a problem, I will opt for this. Sorry to be telling you a bad scenario, but I think it is important to be informed of all possibilities... Regarding my not taking Tamoxifen, I have recently done some research on a drug called Metformin and have found that it reduces diseases of aging, type 2 diabetes as well as cancerous tumor growths...it has very minimal side effects, and is well tolerated by most people. They have done studies on Type 2 Diabetics who have taken it long term and have found that they live, on average 8 years longer than those who don't take it. There is currently a study happening in the UK to see if it actually allows people to live longer do to the fact that it does seem to prevent diseases of aging....including Parkinson's, dementia etc. So it's a long term gamble, but I'm trying it out. Time will tell lol.

grainne, regarding my grade 2 status, that is what was written on my diagnosis paper...that's all I know. My cancer was over 1cm. Large for slow growing Tubular...maybe that is why, I'm not sure.

On another note, I also have Irish heritage. My Great grandfather was born in Ireland... family name was Fitzpatrick! Luck of the Irish to you Briley...keep us posted on what you decide to do.

Sep 4, 2016 12:03PM - edited Sep 4, 2016 12:05PM by grainne

briley, i was lucky enough to have private medical insurance. I would happily have gone nhs but for the delay. When the local hospital rang me to make an appointment for a preliminary xray i was waiting outside the theatre in a clinic in belfast for a lumpectomy. My care was first rate, as is the followup. I had some difficulty in getting a lot of information, partly because i have no background in science and didn't know anyone with bc so i didn't know the right questions to ask. Initially, i think i was given info on a 'need to know' basis. I used this site a lot for info, having first scared myself witless on google. I asked my r.o., who was lovely, to show me my pathology report and go through it with me, which he did.

i had 1.3 dcis with 3 or 4 foca of pure tubular inside it. One of the margins was narrow so it was targeted with 3 radiation boosts in addition to the standard 15. I didn't think twice about rads or tamoxifen. As vor says above, I'm anxious to avoid a new primary in either breast which might be of a less favourable type. I see one of your options is a double mastectomy, which seems very drastic for tubular but i see you have family history and i understand you are thinking it will allow you peace of mind. My life is back to normal, which the exception of some pretty tolerable hot flushes. The side effect none of us can avoid is anxiety about recurrence, a new primary or mets. That is what i have found most difficult. Anything you can do to get reassurence is worth it

Sep 5, 2016 01:21PM Briley73 wrote:

grainne... When you say that your RO went over your pathology report with u.. Are u talking about the pathology from the testing of the tumor after it was remove with lumpectomy or from just the biopsy? No one has mentioned to me about meeting with RO after lumpectomy

Sep 5, 2016 01:59PM grainne wrote:

yes. I got very little info from the biopsy. I was told the size, that it was er positive and hat it was dcis/idc, ie, there was more dcis than idc. Talking to the bs before the lumpectomy he was very clear that he couldn't give me a clear prognosis until after he got the pathology report a week later. That was a long week. My phone lay on my desk like a hand grenade. I never took my eyes off it, waiting for the call. I went back to see the bs for the results. He was delighted to be able to tell me it was tubular. He said the chance of distant metastasis of tc is negligible. He put the chance of recurrence at 4-5%,cut to 1% by rads. It didn't occur to me to ask anymore... i didn't know there was anything else to ask. After coming on this site, i realised there was a lot of info i didn't have. I saw my ro for review after completing rads and he went through the path report with me then. I didn't even know there were different grades of dcis. One important thing i didn't know was that i have an increased risk of a new pjrimary bc in the untreated breast and tamoxifen significantly reduces that risk. I know some women with tubular look at the stats and the v v marginal benefit of tamoxifen or a.i.s and make an informed choice not to take them but just to be vigilant. One other thing: in the u.s. everyone gets an m.o. which seems to be a general cancer expert to coordinate care and followup. There is also a 6 month mammogram from diagnosis. We dont get either of those. I suppose i feel, therefore,as if i need to take a proactive approach.

I'm sorry you haven't been able to tell your family. I told.. ((and have still told) very few people but you do need even one or two friends. Having said that, it is really only posting anonymously on these boards that i have been able to reveal my pathetic neediness and know that it is understood. There are a number of really knowledgeable women posting on different boards as well.

Sep 5, 2016 07:37PM isee wrote:

Hi again Briley and everyone, FYI...I'm in Canada
My sister (who has also recently been found to have BRCA2+ like myself) had breast cancer the first time in about 1982 or 83, DCIS I believe. She was 37 years old as I mentioned. They treated her very aggressively with chemo and rads... only had a lumpectomy though. Last Oct. more breast cancer in the same side was found by mammogram IDC I think. They then did an MRI and found that she also had cancer in the other side, not sure what type. I am not sure what kind of reconstruction she was hoping to have...as I said earlier, at almost the last moment after she had decided on the double mastectomy, they told her she was not a candidate for any reconstruction until she lost some weight. I firmly believe that she is so overweight from the chemo she had at 37, and possibly is being affected by lymphodema in her legs, as they removed all her lymph nodes in the surgery when she was 37. So then they didn't do the surgery until about March...(Oh Canada)...and by this time one of her nodes was positive...and given that most if not all of her nodes had been removed when she was 37, who knows what the status of them would have been. She has had nothing but trouble since having the mastectomy...and I'm sorry to say this here as I don't like upsetting someone who may be in a similar situation, but I totally believe that we need to be truthful about treatments, consequences etc. We all have different experiences...some better than others. Knock on wood, I feel I was treated very quickly and very well personally. I have absolutely no complaints about my bc surgery or treatment. My surgeon was spectactular and the people at the Cancer Clinic I went to were amazing. The biggest challenge for me was having to have a second surgery to make sure that they had clear margins...which they didn't get with the first surgery...they didn't know this though due to the tubular cells. The tissue also had to be sent to another Cancer Clinic as it was a difficult diagnosis as I gather Tubular cells are difficult to distinguish from normal cells. The waiting was a killer. Also, even though I had a sentinal node biopsy and only 3 nodes were removed, I was told to try not to injure that arm or have blood tests etc. on that side. I should add that I think the reason my sister opted for the double mastectomy was because she had such a horrible experience with the Chemo back in the early 80's, that she absolutely refused it this time around. She did have Radiation however.

Sep 6, 2016 04:45PM Kaneli wrote:

Hi Grainne, First of all, I do believe my Antrim McDonnells are from the Glens of Antrim. It sounds very familiar. Unfortunately, all of my father's siblings, parents, etc, are deceased. No cousins or anything like that, on my dad's side. It is interesting that, in the States, McDonnell is a rather uncommon name. McDonald is pretty common around here, but not the McDonnell spelling. I have gotten into debates with people about whether McDonnell is Irish or Scottish. Well, my maiden name is Kathleen Anne McDonnell, and you can be sure that I am on the green side of that discussion!

I am sorry that you have not felt that you could tell many people about your BC dx. I kept it to myself for....not too long. My sisters. my daughter, my boyfriend, my close friends, have been an encouraging rock for me. Aside from the fact that it is helpful to have someone to talk to, they also are a bit more understanding with regard to mood swings, and all of the emotional roller coaster rides I take. I was really scared to tell people at first, particularly my children and my boyfriend. They have hung in there with me, and I know it has not been easy for them at times. But at least they know what's going on with me. That being said, BCO has been a wonderful site for me, because, as fortunate as I feel to have the support of my loved ones, none of them has been through this. So I have their love, but I still need to reach out to places like this....also to not feel alone :)

Hey....We got this!!!

Sep 14, 2016 02:24PM grainne wrote:

briley, I'm wondering how you are getting on?

Kaneli, have you had your update with your bs?

Sep 15, 2016 10:03AM grainne wrote:

what a nice cheerful message to get! I've a checkup with my r.o. tomorrow iso I'm a bit anxious but not much. I'll write more tomorrow when it's over.

Sep 16, 2016 12:27PM grainne wrote:

p.s., kaneli, i think the plastis surgery is a fantastic idea! I look forward to an update.

Sep 20, 2016 09:05AM Brightsocks wrote:

I found this link that shows a slide (40) of what it looks like under a microscope.

http://www.slideshare.net/kirubavijay/breast-carcinoma-pathology

Sep 22, 2016 12:26PM Brightsocks wrote:

I had my first mammogram since finishing my radiation treatments. I believe that all went well for I was not called back into the room for another test. I will meet with my RO on Monday to go over the results. I had a nice tech which helped for I have had experiences with bad tech over the years. So I am grateful that it went well and it is over.

Sep 22, 2016 02:00PM Kaneli wrote:

Well, I saw the Plastic Surgeon today. I really liked her. She recommended a breast reduction in my right breast to make them even. Nothing for the left side. She does not like to reconstruct on the radiated side within one year from radiation. That's fine....I just want them to be even again. But I really have to think about this....It sounds like a lot more that I expected. I thought just a simple "lift" would do the trick, but apparently not. She said I would have drains (or a drain) and that I could expect to not work for about 2 weeks, and not lift or exercise that side of me for 6 weeks. I just don't know. Anyway, she is putting it in for a precertification and I will think long and hard about if I want to do it. My DH (He's my Dear Heart, since he's my boyfriend of 5 years, not my husband....who is not dear!) does not understand why I want to do it. I know he loves me and thinks I'm beautiful "just the way I am," and that's wonderful but.....I sure wish my breasts were the same size and symmetrical! So I'll take a few days to decide. I want to do it this year since I've met my deductible so I need to not take too long to decide! Any thoughts?

Sep 23, 2016 01:53PM Kaneli wrote:

Grainne, you nailed it when you said that every time you change clothes, shower, go braless, even around the house, and yes... make love, It's there. It's a reminder. And I guess you're right that the grieving process is still part of it all. I'm not worried about the pain. Not too thrilled about a drain, although I did have the SAVI balloon therapy for my rads and had 7 tubes hanging out of my breast for 10 days! It wasn't fun, but none of it's fun, so it's all relative. I was talking to my DH and he's totally supportive regarding my decision. He seems to get how I feel, even though he says he hardly notices. ...and I wonder, is my vanity getting the better of me? I have not heard back from the PS as to if insurance covers it so it may be a moot point. Anyway, I'll take a few days to really evaluate whether it's the best move for me. And I appreciate any feedback from my BCO friends. Even if we all have different dx, prognoses, treatments, etc...we still have all been affected by breast cancer. It helps to get viewpoints from other women who get it. So thank you!

Oh, and btw, I made the comment last time about my DH not being my husband, but my Dear Heart, my boyfriend. And that my husband was not so dear....I wanted to clarify that he is my ex-husband for the last 10 years. Just didn't want you to think I was talking about my boyfriend but that I was married! No judging anyway....just wanted you to know!

Sep 25, 2016 03:09PM grainne wrote:

I'm wondering how everyone else is getting on, especially Briley, and also Brightsocks... i hope all goes well tomorrow.