Micro-invasive DCIS that is her2+++
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Catherine,
I had a BMX and no further treatment. At the time of my dx, the DCIS was ER+ so the BMX had a lot to do with wanting to avoid Tamoxifen and radiation. But, also note that I've been trying to have a baby for a while and wanted to continue that. Being 35, I don't have tons of time left for that, especially not 5 years. Mostly, I wanted to be as done with this as I could possibly get. However, after the invasion was found, it was ER-. Since they will only treat what is invasive, the oncs decided there was no need for Tamox. Also, since my invasion was so small, they felt that Herceptin/chemo was too much treatment. I'll tell that I didn't walk away from chemo lightly. I researched a lot and saw a couple of oncs. But in the end I was convinced. As long as you can sleep at night, you're doing good.
Oh, the HER2 is a protein and you can find a better explanation of what that is and why it matters on these boards than I can give you
You shouldn't need radiation, that's a major perk of the surgery.
I don't know about your lifestyle, but I really started researching lifestyle and nutrition and how that impacts cancer. I've made lots of changes since my dx, and have lots more planned. Being able to do something positive like that has really helped me a lot. I think it gave me a feeling of some measure of control over my body. The exercise also helped me like my body more, which is something I am struggling with about the BMX.
Hope this helps! Try to enjoy the Memorial Day weekend. Do something fun and try to forget about stupid cancer for a while
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I am so glad I found this board, I have had so much information thrown at me it's hard to keep it all straight. I was diagnosed with DCIS grade 3 and it covered a 9cm area. I had a full mastectomy on the left breast with a layer of fiberous muscle removed because one part of the DCIS went deep and touched the chest wall. I had 7 nodes removed and all were negative, which I am so thankful for. They did discover I had a tiny microinvasion in the tissue , a tumor of .05cm. and all was well away from the margins. My oncologist said no chemo or radiation was needed.Tamoxifen mostly for the other breast as a preventative measure. I have to wait unitl after June to start as I have a uterine biopsy scheduled because 2 weeks after no period for 12 months they are concerned about cancer there. I did have all the hormonal symptoms of a period and a pelvic ultrasound looked good and normal. Then after 2 weeks after my visit with the onologist I got another call from him says I am HER2+ but they feel no herceptin is needed and that chemo may only give me a 1% increase for treatment, but that it is up to me to weigh the pros and cons of doing this. I am now confused. I have requested to see a medical oncologist as I saw a radiation oncologist the first time. I have read a lot about HER2+ but still don't understand if I had no invasion in the nodes can I get cancer elsewhere??? While I am so grateful and thankful that my diagnosis is what it is and it was caught very early I am still feeling on shakey ground. I hope to see this med.oncologist in the next few weeks.
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Willow13,
I was told that involvement of the nodes is the most crucial indicator for staging and therapy. Regardless of the microscopic microinvasions in my DCIS, I had chemo+H because of the micromet in one node.
The difference with HER2: as I understand, HER2+ microinvasions metastasize into the nodes faster - but you don't have to worry about that because, obviously, your DCIS was removed before that happened.Hope this helps,
Jenna
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Lymph node invasion, unfortunately is not the only way cancer can travel. Rogue cells can also escape into the blood vessels and travel throughout the body that way. It is less common to hear of women with node negative disease recurring, but it is possible to still have recurrences--distant as well as local.
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I am so glad this thread exists to connect us all out there!
I've had a simple mastectomy with reconstruction recently and got my biopsy results back. While the invasive component was just 2 mm, the surgical margin of 1mm obtained at the closest point is a worry (there was no more tissue left to take, just skin which they could not remove.) This, plus my cancer profile and relatively younger age, means I am in the 'gray area' for treatment and it is so frustrating!
I have been presented with 3 different treatment options - (1) doing nothing at all, (2) doing chemo only [TC X 4] or (3) doing radiation only. Opinions 1 & 2 came from my breast surgeon and then oncologist but since they had differing views, I sought a third party opinion only to be told something different (oh well, at least everyone agrees that Herceptin is not for me)!
I also have fertility issues to consider (was planning to start a family this year) but before that, need to figure out which treatment to follow.
I have much 'life prority' thinking (vs. proposed treatment pros & cons) ahead to come to the best path to follow and was wondering if anyone else has been in a similar situation (i.e. suggested different treatments) and if so, how did you come to a final treatment decision that you were comfortable with?
Thanks for taking the time to read, and take care!
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Hi all I'm so glad that members are starting to find this thread. A friend just e-mailed me the below article & thought that I would share it with my "micro-invasive" sisters.
Johns Hopkins Update - A Very Good Article
AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY
IS THE ONLY WAY TO TRY ('TRY', BEING THE KEY WORD) TO ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY.
Cancer Update from Johns Hopkins :
1. Every person has cancer cells in the body. These cancer
cells do not show up in the standard tests until they have
multiplied to a few billion. When doctors tell cancer patients
that there are no more cancer cells in their bodies after
treatment, it just means the tests are unable to detect the
cancer cells because they have not reached the detectable
size.
2. Cancer cells occur between 6 to more than 10 times in a
person's lifetime.
3. When the person's immune system is strong the cancer
cells will be destroyed and prevented from multiplying and
forming tumors.
4. When a person has cancer it indicates the person has
nutritional deficiencies. These could be due to genetic,
to environmental, food and lifestyle factors.
5. To overcome the multiple nutritional deficiencies, changing
diet and including supplements will strengthen the immune
system.
6. Chemotherapy involves poisoning the rapidly-growing
cancer cells and also destroys rapidly-growing healthy cells
in the bone marrow, gastrointestinal tract etc, and can
cause organ damage, like liver, kidneys, heart, lungs etc.
7. Radiation while destroying cancer cells also burns, scars
and damages healthy cells, tissues and organs.
8. Initial treatment with chemotherapy and radiation will often
reduce tumor size. However prolonged use of
chemotherapy and radiation do not result in more tumor
destruction.
9. When the body has too much toxic burden from
chemotherapy and radiation the immune system is either
compromised or destroyed, hence the person can succumb
to various kinds of infections and complications.
10. Chemotherapy and radiation can cause cancer cells to
mutate and become resistant and difficult to destroy.
Surgery can also cause cancer cells to spread to other
sites.
11. An effective way to battle cancer is to starve the cancer
cells by not feeding it with the foods it needs to multiply.
*CANCER CELLS FEED ON:
a. Sugar is a cancer-feeder. By cutting off sugar it cuts off
one important food supply to the cancer cells. Sugar
substitutes like NutraSweet, Equal, Spoonful, etc are made
with Aspartame and it is harmful. A better natural substitute
would be Manuka honey (a New Zealand Honey - can be found at some health food stores or online {Amazon.com}) or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color Better alternative is Bragg's aminos or sea salt.
b. Milk causes the body to produce mucus, especially in the
gastro-intestinal tract. Cancer feeds on mucus. By cutting
off milk and substituting with unsweetened soy milk cancer
cells are being starved.
c. Cancer cells thrive in an acid environment. A meat-based
diet is acidic and it is best to eat fish, and a little chicken
rather than beef or pork. Meat also contains livestock
antibiotics, growth hormones and parasites, which are all
harmful, especially to people with cancer..
d. A diet made of 80% fresh vegetables and juice, whole
grains, seeds, nuts and a little fruits help put the body into
an alkaline environment. About 20% can be from cooked
food including beans. Fresh vegetable juices provide live
enzymes that are easily absorbed and reach down to
cellular levels within 15 minutes to nourish and enhance
growth of healthy cells.. To obtain live enzymes for building
healthy cells try and drink fresh vegetable juice (most
vegetables including bean sprouts) and eat some raw
vegetables 2 or 3 times a day. Enzymes are destroyed at
temperatures of 104 degrees F (40 degrees C).
e. Avoid coffee, tea, and chocolate, which have high
caffeine Green tea is a better alternative e and has cancer
fighting properties. Water-best to drink purified water, or
filtered, to avoid known toxins and heavy metals in tap
water. Distilled water is acidic, avoid it.
12. Meat protein is difficult to digest and requires a lot of
digestive enzymes. Undigested meat remaining in the
intestines becomes putrefied and leads to more toxic
buildup.
13. Cancer cell walls have a tough protein covering. By
refraining from or eating less meat it frees more enzymes
to attack the protein walls of cancer cells and allows the
body's killer cells to destroy the cancer cells.
14. Some supplements build up the immune system
(IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals,
EFAs etc.) to enable the bodies own killer cells to destroy
cancer cells. Other supplements like vitamin E are known
to cause apoptosis, or programmed cell death, the body's
normal method of disposing of damaged, unwanted, or
unneeded cells.
15. Cancer is a disease of the mind, body, and spirit.
A proactive and positive spirit will help the cancer warrior
be a survivor. Anger, un-forgiveness and bitterness put
the body into a stressful and acidic environment. Learn to
have a loving and forgiving spirit. Learn to relax and enjoy
life.
16. Cancer cells cannot thrive in an oxygenated
environment. Exercising daily, and deep breathing help to
get more oxygen down to the cellular level. Oxygen
therapy is another means employed to destroy cancer
cells.
1. No plastic containers in microwave.
2. No water bottles in freezer.
3. No plastic wrap in microwave.
Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital, was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper. The dioxin problem is one of the reasons.
Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.
This is an article that should be sent to anyone important in your life.
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Hello Ladies so glad you are all here
I have joined on May 1-2010 on the DCIS side never added any postings just found reading others made me feel better. I was dx with DCIS stage 0 grade 3 ER-/PR- on Jan 5/10 had a lumpectomy on Feb 19/10 margins not clear, doctor said because of my breast size small he could not do another lumpectomy so I decided to have a bilateral masectomy with SNB this was done on May 21/10 just got path reports back yesterday it say tumor size can not be determined because of the scattered and multifocal nature of the lesion. Tumor located 1mm from the closest posterior margin and tumor located 0.6cm from the superior margin. One focus of micro-invasive carcinoma seen less than 1mm in greatest dimension, two lymph nodes negative for malignancy. I am trying to make sense of this I am hoping no treatment such as cemo or rads my family doctor says that she doesn't think I will need any becasue it it still very early bc. I don't see the others doctors till June 28 I just want to get perpared for whats next. Can I get some opinions on my report please it would be a great comfort to me. I am doing this nightmare alone, this site has kept me very informed and I thank you all for being here.
Take care,
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Happerdays and Poppalicious,
Being in "gray area" is tough. In my case, it was not clear whether to irradiate the axillary area or not. Again, it was the "micro" that made it unclear - micrometastase in one node only. I chose not to have radiation. For a month or so I felt bad and slowly learned to live with the decision. Now, I am completely fine.As Weety says, lymph node invasion is not the only way cancer can travel, rogue cells can also escape into the blood vessels and travel elsewhere. Even small IDC is treated with chemo ( >2mm if HER2+). But - for the DCIS with microinvasions, currently, the situation is not clear and it is assumed that the possibility is extremely small that cancer cells travelled outside of the breast if the nodes are clear. It is not surprising that you were offered the option of doing nothing after your surgeries.
I am not sure regarding the margins and radiation though. You can search through some older beesie's posts - she posted detailed information on the topic.
All the best with your decisions,Jenna
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Hi Everyone,
I am new here too. I fall in a gray area and I don't know where I fit. I was diagnosed in April with DCIS High grade comedo and intermediate DCIS. After all was said and done I had a bilateral mastectomy due to more than one biopsy on more than one breast, dense breasts, ADH, etc.. Anyway, my path came back yesterday from the bilateral and I got the call that there were cancer cells in the Sentinal Node. From what I have read I am in a small percentage who had the sentinel node show cancer with a DCIS diagnosis. They don't usually even do the SNB for that reason.I also read there may have been a missed microinvasion from my research. No one has told me this, only what I read. I have not actually seen the my current pathology.On my first visit the Oncologist explained pure DCIS can not spread, so I wonder if the reasearch is correct and something was missed in the original pathology. Can anyone explain this? Did anyone else have this happen? I thought I did everything possible having the bilateral. This has just gotten me so upset. Oncologist is out of town,I will see him next Tues. (got the path report from the surgeon). Would like to know where this leaves me, treatments, stages, etc. Thanks
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Deb,
I'm so sorry that you are having to go through this. I understand how hard it is to think that this will be over after the surgery only to find out that it's not. I think your instincts are right about this. You probably did have some micro-invasion that was not found on your pathology. From what I understand, this is not that hard to do. If you think about how small a mm actually is. Your onc explained that true DCIS cannot spread, yet when you read about DCIS, you will never find that it has 100% cure rate. My onc explained to me that that is probably because there are some micro-invasions that are not found. You were fortunate that it your surgeon did the SNB so now you know what your dealing with. That may not feel fortunate, but it really is better than not knowing. I don't know where this will leave you as far as treatment and staging goes. I wouldn't want to make any assumptions. I'm wishing you the very best and hoping that your treatment and recovery go very well.
On another note, I am happy to tell you all that my new boobs are coming in a week from today, June 18th! I am looking forward to tank tops and sundresses. Oh, and my endometrial biopsy went well, everything normal. Gyno says the mid-cycle bleeding is probably hormones. Gee, what a surprise to hear my hormones are screwy! And more good news, after less than 6 months of vitamin D supplements, I'm up to 54. Dr. doesn't want me to get higher, but maybe just a little.
Hope everyone is doing well. Drop in and say hello.
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Hi Imnop35
What grade was your DCIS ? your DX seems to be close to mine DCIS grade 3 with 1mm microinvasion ER/PR- Do you remember what your margins were I have one at the posterior that is 1mm I am hoping that this will be enough of a margin so they will not recommend cemo or rads my app with the surgeon is not till the end of June, my family doctor thinks they may do nothing just put me on careful watch. Whats your opinion
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Actually received my path report. I also have LCIS as well as DCIS high grade comdeo. The path report states that I have isolated tumor cells in the sentinel node. Here is a link to what BreastCancer.org says regarding this. I see the oncologist soon.
Imnop35- good luck with your exchange surgery. I can't wait to be where you are.I am just starting that journey. Also good luck with vitamin D. Our son is on the regmine of 50,000 units for 6 wks, 1,000 per day for six weeks. His original number was 18. Way too low. 54 sounds great, Keep up the good work
Happierdays-As far as clear magins, I had them although there was ADH in one. I just decided to have the bilateral, since I had another biopsy on the right side a couple of years ago. I hated the treadmill I was on with monitoring. After this last path report, I am glad we chose this route. It is truly personal though, only you can make your decision.
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My DCIS was also grade 3. I had a BMX so I really don't know what my margins were, I just know they were big. My entire area of DCIS was only 1 cm. Happer, if you only had a lumpectomy, I think it's pretty standard that you will also receive rads. That's one of the reasons I chose to do the BMX, although I do sometimes wonder if it was worth it. I just personally couldn't deal with that level of risk, but not everyone feels the same.
Deb, good luck with your dr appt. I remember feeling like you do about how far away it seemed to get the exchange surgery done. But honestly, the time has gone by very quickly. My surgery was only in March, so it has been pretty quick. But in March, June seemed like a lifetime from then
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Hi Imnop35
I did have a DMX on May 21-2010 I was just wondering about treatment they found multi focal DCIS with one micro-invasion less than 1mm I had one margin that was close to the posterior margin it said 1mm from the closest posterior margin. My doc.app. is not till June 28th I am trying to stay positive and not think the worst.
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Hi Daisy6
Do you remember how close your margin near the chest all was my is 1mm so I fear rads may be recommended but if it is I am going to ask the doctor if he can go back in and get a better margin and maybe get the PS to put the TE in while I am opened again Do you think that 1mm margin will be good enough not to require rads I feel it will do more harm than good.
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Hi Imnop
Just wanted to wish you the best with your exchange tomorrow. I'm sure you'll be happy to lose those TE's! If you have any questions, don't hesitate. Laura and I have recently been through it. I just got my nips a couple of days ago. So far, so good. Hi Happerdays
My closest DCIS margin was <1mm from posterior/deep margin. I was also worried about the close margin. I realized that, as of late, sometimes radiation is being suggested for this - even with a bilateral. I think that many factors are considered before this recommendation is made, including where the margin is. I contacted my onc just a few weeks ago, after reading some of the current studies, and she still suggested that it was not necessary for me. The fascia is usually removed during a mastectomy, but not always. I wonder, with your close margin, if they also removed some of the fascia. 0 -
Hi Amyob
I don"t think they removed any fascia but I am not sure. If they recommend rads I will ask if they can remove more tissue to get a better margin when they put the TE in instead of rads. My app is June 28 with BS and my app with Onc is July 7 so I will see what they say. My family doctor says they may do nothing else except to put me on close watch because it is still early breast cancer and to over treat can result in more harm than good.
Hello All
Little history on me...My mother was dx with breast cancer at age 32 stage 3 she had a mx and was told their was nothing else they could do of her ..... mind you this was in the 60's , she when on for 12yr. with not sign of cancer but in the 13th year it mat and took her life at 45 I as 14 teen at the time . Father died at age 45 of colon cancer and my brother died at 39 of colon cancer I was dx with uterine cancer at age 40 this was found after my hysterectomy no treatment required it was found early I took part in a gene test looking for what was called Lynch Syndrome because of some many people in my family having colon cancer , uterine, brain, and on and on. So in May 2009 I as dx with this Lynch Syndrome this put me in a high provability to get many types of cancer so I had my ovaries removed as a precaution I was dx with BC on Jan 5-2010 at age 43 and on Jan 28-2010 my last brother died of colon cancer so now I am the only person left in my family. People ask how I keep going I tell them "I change the things I can... I accept the things I can't and move on".
I would like to thank you all for being here and posting your life.... it has helped me so much and I know I will be pulling strength from each and everyone of you during my journey and I hope I can help others too.
Take care Kelly
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Jenna1961 - thanks so much for your thoughts! I have since opted for chemo (subsequent rad and drugs not needed) to start later this week. It was an incredibly difficult decision to make but I have come to the conclusion that although chemo is aggressive for my situation and that I would have doubts regardless of whichever path chosen, doing chemo would help me gain more peace of mind about the long term. I have been frantic in trying to prepare for the next 3 months and so can't wait for Christmas where I hope to be able to look back with a smile. Take care and more later!
Happerdays - I too would like to join you in thanking all for posting their achievements, fustrations and learnings, it means so much to see what I am going through is 'normal' and to be able to connect with others 'just like me'!
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Hello all,
Just wanted to drop in to let everyone know how my surgery went. I must say it was pretty much a breeze. It was same-day, of course, and I had some mild pain that night, but I haven't taken any pain meds since the night of the surgery. I had lots of nausea with my first surgery so I told them to hit me hard with the anti-nausea and they did. Not until I got home and hours later took that vicodin that I felt sick. Anyway, just been on tylenol since then and not even that much of it. Had some friends over for dinner the next day. They look pretty good I guess. It feels a bit anti-climatic. I've been trying hard to keep my expectations in check, but now is the point that I know this is just how it's going to be from now on, like it or not. It's kind of sad. But, it's definitely better than the TEs and it's just moving on now.
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I am so happy your exchange went well I hope the GIRLS fit in to their new home soon and you can feel complete again. Go get that new bathing suit and have a wonderful summer.
Take care
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Imnop35-so glad your surgery went well! I was kayaking 10 days post exchange - for me it was so much easier than the Mx so I hope it will be for you as well. Take things slow and listen to your body...all those good things.
Poppalicious- I was under the impression that if you were her2+++, chemo was always the protocol. Is that wrong? Herceptin works best when in conjunction with chemo drugs. That is how it has been studied. I went through Herceptin and Taxotere/Carboplatin. I can help with any question if you want to PM me. I finished Herceptin in December. You're giving yourself the best possible chance and you can feel confident in that!
Happerdays -
it's stories like yours that inspire and cause us to press on! God bless you for what you have been through and know that you always will have a family of sisters here!
daisy6 - I have read that recentfinding about radiation during surgery but I suspect that like many other things it will be quite some time before we begin to see this practice as standard.
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KorynH - Thanks for your thoughts and offer of help!
I also got that impression initially from reading previous posts and as such my husband and I repeatedly challenged my Oncologist on this and she still would not prescribe herceptin (!), only chemo as she said the risks outweighed the benefits. Her recommendation was largely due to my cancer profile (don't totally understand it but apparently it's not the typical 'micro invasive, hormone negative, HER2+' profile) and surgical outcome.
Understandably I was not happy at first, so sought second and third opinions (inc. from a dr known to recommend both chemo and herceptin); neither thought I would benefit from it, and that I should theoretically fall into the category with a good survival rate without any treatment. This helped put my mind somewhat at ease (plus that my Oncologist works with a team that reviews borderline cases together), as such I decided to trust in her/the team's original recommendation by doing something more aggressive than 'nothing', but this took ages to decide!
I am now nervously awaiting my first chemo date (this Friday) and despite knowing I would had doubts regardless of the treatment path chosen, have come to some peace with my decision. Being in this gray area is so not easy!
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According to my onco and everything i've read, any invasive under 5 mm, chemo and herceptin risks outweigh the benefits. Mine was 1mm invasive, and after talking with 4 Drs, they all agreed.
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Hello all,
I have been on this whirlwind going from 6 month follow ups for calcifications to grade 3 DCIS. with "microinvasion" I decided on a very aggressive treatment (bdl mast with tram flap reconstruction on May 27th) so I could possibly avoid some of the worry/ future follow up. After surgery I was told they found no micro invasion when they did the mastectomy-- so I thought I just had to get through the surgery. When I went back for follow up last week..., I was told they have to go back and test the biopsy sample as it had microinvasion and they need to see if it is HR/PR + or - (do they usually test a biopsy sample??) . And they say they DONT think I need chemo but they are having me consult with someone just to rule it out . Was trying to move forward -- appreciate any thoughts -- I had in my head if they didnt fine the mirco invasion in the mastectomy--- maybe it just wasnt there. appreciate any input!
many thanks
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camalinow-
I hope you are healing well! I'd say a second opinion is never a bad thing, and I highly encourage it when I counsel patients. No two doctors seem to see things the same, though, so sometimes it can confuse you more than you might already be, but I say knowledge is power, so a 2nd opinion may open yorur eyes to things you hadn't thought of previously.
Keep an open mind, ask loads of questions and do your research. Do they do an oncotype DX score when you have DCIS? I don't know but that is often a determining factor on whether or not you need chemo as is her2neu status.
The forums here seem to offer lots of help so you might ask question in another thread as well and find the answers you seek or start a new thread of your own! The ladies here have helped me tremendously.
Wishing you all the best!
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Hi, I'm Lisbeth, I come from Denmark, 51 years of age. I'm reading through this forum and think this is my case. I was diagnosed at the end of June with some microcalcifications, and the biopsy showed early stages of cancer. I went through a lumpectomy and they found a 0,8mm tumor. They removed two lymph nodes through the sentinel node method and found no cancer here. The tumor was reacting to hormones and Her2+, of middle growth rate. In Denmark my treatment automatically will be 6 times chemotherapy, 25 times radiation theray, 17 treatments with herceptine and finally 5 years of anti-hormone treatment. So it will last about 1 1/2 year till I'm through the treatment, which is preventive, since right now they have removed everything from the breast. Anyone here who has been through all this?
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goejsen, Welcome!
With a 0,8mm tumor, you have more than an microinvasion. Most of the women in this forum have microinvasive HER2+ tumors that are only about 0,1mm in size. From my understanding, your treatment seems to be along the lines of what others with your type of diagnosis have had but I think you're more like to find women with this diagnosis in the HER2/neu Positive Breast Cancer discussion forum, which is just a few forums below this one on the discussion board.
Good luck with your treatments!
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Lisbeth-
I went through the chemo therapy piece of your treatment and TRIED the hormonal piece with too many side effects so quit last month. But if you have any questions about chemo and Herceptin feel free to message me and I can walk you through it. In answer to your question is this preventive, in theory? Yes. My oncologist told me that there is no way that they can't guarantee one rogue cancer cell isn't still floating around in your body and that is why the chemo, especially with the Her2+. His quote to me was that the greater risk of recurrence in my case is the her2neu+++, not necessarily the hormones, so we will re-evaluate when I see him next month. For now, the Tamoxifen is not for me.
Best wishes to you. I know facing a year of infusions sounds daunting, but you will get through it and I can tell you that now 18 months later I have a full (very full) head of hair and have my energies back. Good luck, and again feel free to message me!
Koryn
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Hi, Ladies. Does your oncologist do PET scans and blood work every 3 months? Mine says not necessary, however my GP says he thinks I should get another opinion.
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I had a single mastectomy with implant reconstruction. I get annual mammos and annual MRIs, alternating every 6 months. No PET scans or blood work. PET scans emit a lot of radiation (much more than thought - this was in the news a few months ago) and my understanding is that they should only be given on an "as required" basis, which means if you have later stage BC or if you have symptoms that are of concern. As for blood work, I think that's a bit of a mixed bag in terms of whether it's done or not but my guess is that the majority of early stage women don't get it.
Your GP may be thinking about other cancer patients he has who have more advanced stage cancer than you and may not realize that these tests are often not required for those who are early stage. The oncologist is more the expert on this than a GP.
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